tag:blogger.com,1999:blog-88168230586950524022024-03-13T00:43:31.801+00:00People Thinking ActionTaking sides in the clash between humanity and impersonal systems.Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.comBlogger65125tag:blogger.com,1999:blog-8816823058695052402.post-35038009170039987262016-02-11T00:36:00.001+00:002016-02-11T00:51:36.892+00:00Turning Ideas Into Action<span style="font-family: "verdana" , sans-serif;">There is a really electric feeling at that point for the first time ever we take an idea and try to turn it into reality. It's electric the first time you do it yourself, even if a million people have already done it, because you prove something to yourself. It's called learning. </span><span style="font-family: "verdana" , sans-serif;">And when we do exactly the same thing for the first time ever it's called innovating.</span><br />
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<span style="font-family: "verdana" , sans-serif;">And lots of people have taken the ideas in my recent post about <a href="http://peoplethinkingaction.blogspot.co.uk/2016/01/maximising-choice-and-control-in-end-of.html" target="_blank">maximising choice and control in end of life</a> and are beginning to try them out out too: real innovation happening right now!</span><br />
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<span style="font-family: "verdana" , sans-serif;">Pioneer of person centred thinking and planning Helen Sanderson followed the simple rule in person centred approaches: <i>"Try it out with yourself or your family first, because the closest thing to experiencing using it in real life, is experiencing using it in real life".</i></span><br />
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<span style="font-family: "verdana" , sans-serif;">So <a href="http://helensanderson.net/2016/02/my-mum-and-maxeolc/" target="_blank">she sat with her mum Carolyn, and helped her own plan</a> for end of life.</span><br />
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<span style="font-family: "verdana" , sans-serif;">She had already started a plan, so they worked together on it further: Here's what they came up with together.</span><br />
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<span style="font-family: "verdana" , sans-serif;">To me, you have captured the essence of a person centred practice as soon as you can sit down with your mum and do it!</span></div>
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<span style="font-family: "verdana" , sans-serif;">Helen also pointed out something: It's quite routine for people like our mortgage advisor or our solicitor to ask us what our plans are for the end of our life, what will we do with our possessions? How will we pay for our funeral? Why is it therefore so rare that nobody medical asks us about our plans for when we die? Could this be something our GP does? Whose job could it be?</span></div>
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<span style="font-family: "verdana" , sans-serif;">We also encouraged as many people as possible to try the new formats out at their own homes, hospices or workplaces, or indeed with their own friends and families. We will have a big online feedback session soon, using the hashtag #maxeolc. Don't forget to use the <a href="http://finkcards.com/products/advance-care-planning" target="_blank">Advanced Care Planning 'Fink Cards'</a> as a way of opening up really good conversations around end of life.</span></div>
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<span style="font-family: "verdana" , sans-serif;">It's not just in the UK. I sent out an electronic version of the Daily Mail article to my colleagues on the board of The International Learning Community for Person Centred Practices. Some of them have felt driven to action too!</span></div>
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<span style="font-family: "verdana" , sans-serif;">Laura Buckner said "<span style="background-color: white; color: #222222;">I have shared your work online. I recently shared it with my cousin (end-stage lung cancer). I will have lunch next week with a cycling buddy of mine who also happens to be a hospice chaplain; I specifically want to share your work with him and talk about how we can collaborate to bring this to the many patients and their families he supports.</span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><span style="background-color: white;">and </span><span style="background-color: white;">Michael Smull said "</span><span style="background-color: white;">Great article. I hope it inspires many others to do the same. I have been sharing your planner here in the US. I have sent it to some of the federal officials I know and I was showing it the people in charge of social care and health in the Minneapolis area yesterday. I hope we can help it make a difference here as well"</span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><span style="background-color: white;">So please feel free to become part of this process of innovation. Pick up the tools and try them out in your own workplace. Look out for further blogs on this topic, not just from me but from leaders in the field of end of life, and be ready to join in with the twitter conversation #maxeolc when we announce the date!</span></span></div>
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<br />Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com0tag:blogger.com,1999:blog-8816823058695052402.post-59443307601168739792016-02-07T13:07:00.002+00:002016-02-07T13:27:30.028+00:00How Simple Should A One Page Profile Be?It was great to wake up this morning to find an article about the <a href="http://peoplethinkingaction.blogspot.co.uk/2016/01/maximising-choice-and-control-in-end-of.html" target="_blank">End Of Life Timeline Planner</a> published in today's <a href="http://www.dailymail.co.uk/health/article-3434968/You-ve-heard-birth-plans-write-death-plan-NHS-Trust-encourages-terminally-ill-patients-leave-final-wish-list.html" target="_blank">Sunday Mail.</a><br />
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Bringing ideas from person centred approaches developed over years by great teachers like John OBrien, Michael Smull and Helen Sanderson into the field of End Of Life Care is clearly receiving an immediate and warm response.<br />
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Personalisation in healthcare is an idea whose time has come, and person centred thinking is a key way to help deliver it.<br />
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What I would really like people to understand is that the values and approaches brought together in person centred thinking apply to all human beings: We all have gifts that we need to express, we all have hopes and fears, we all have things that are important to us, and we all need support. As a human being facing the end of my life, it is becoming important for me to make sure that people around me understand what makes good support for me, and this is the purpose of the planner.<br />
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Person Centred Thinking tools have been expressly designed to be simple things. If we can keep medical jargon out of the way, we can find ways to help people have important conversations about what matters to them. I've found <a href="https://www.facebook.com/commerce/products/1272872246060012/" target="_blank">Fink cards </a>are brilliant as a way of generating rich and deep conversations about topics we might normally shy away from.<br />
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<a href="http://cdn.quotesgram.com/img/25/39/1974006280-a038cc5769afe00e7eb8d0a76e89f8a5.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://cdn.quotesgram.com/img/25/39/1974006280-a038cc5769afe00e7eb8d0a76e89f8a5.jpg" height="262" width="320" /></a>My worry about the timeline planner is that it is almost too complex, as it has no less than 25 fields to complete. Thankfully Helen Sanderson has shown us how it can be easily simplified further by making it into a number of consecutive one page profiles.<br />
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Of course not everybody agrees that simpler is better. Human beings are deeply complex creatures. Can we really sum up in one page the essence of what is human, when it took Tolstoy and Proust thousands of pages, and they still didn't fully explicate it? Is it actually an insult to the person to imagine that this is possible? One page about your whole life? One page about a precious human personality? Is that all?<br />
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I think it comes down to understanding what the purpose of a person centred thinking tool actually is:<br />
It is a way of helping us gain choice and control over our lives in difficult situations, at times when it's very easy for the medical machine to grind over what really matters to us.<br />
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So we need simple ways to express what we feel is most important to us, and what is the very best support for us, complicated jargon is out. Having to fit everything into one page forces us to think about what is the very most important. It can be a harsh discipline. <a href="http://www.helensandersonassociates.co.uk/team-members/team-member/" target="_blank">Michelle Livesley</a> is somebody who has thought hard about what makes a one page profile work: she is clear that they need to be absolutely specific about what makes good support, and they need to be assertive: if something is very important to me, then it is not optional. It MUST happen.<br />
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So I'm arguing that the format of a good tool is very simple because keeping it simple helps the person and their family write it well.<br />
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And a one page profile is useless unless it transfers its message quickly and efficiently to care staff who may have little time to read through documentation. <i>It has to be easy to read as well as easy to write.</i><br />
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It is a tool to be used practically in everyday situations at end of life. Making it easy for care staff to understand and use is just as important as helping the person and their family to write it. In my final days, I need my wishes to absolutely clear to everyone involved in my care, without ambiguity and vagueness. The simpler and clearer I make it, the less room for misinterpretation.<br />
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I've sat in committees that have tried to design good tools. "Have we covered xxx?" is the deadly question. Gradually tools grow like weeds from something beautifully simple practical and useful into tortured monsters of complexity. And every time a new layer of complexity is added, a little of who the person is is lost.<br />
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So I find simplicity beautiful for a reason. Simplicity is practical. Simplicity forces us to think of what is most important. Simplicity makes tools easier both for the person writing and the person reading. Simplicity is strong. As Leonardo Da Vinci said "Simplicity is the ultimate sophistication".<br />
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<br />Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com1tag:blogger.com,1999:blog-8816823058695052402.post-29082949150156535822016-01-24T19:54:00.002+00:002016-01-24T20:01:15.323+00:00Press Coverage for People Thinking ActionIn recent weeks the number of people coming to read this blog has shot up.<br />
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It really began with my post on spending <a href="http://peoplethinkingaction.blogspot.co.uk/2015/12/christmas-in-hospice.html" target="_blank">Christmas in St Catherine's Hospice</a> and it has continued with my posts containing templates and <a href="http://peoplethinkingaction.blogspot.co.uk/2016/01/maximising-choice-and-control-in-end-of.html" target="_blank">ideas for personalising End of Life Care</a> using person centred approaches.<br />
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My posts have been featured by <a href="http://www.blogpreston.co.uk/2016/01/opinion-spending-christmas-in-st-catherines-hospice-learning-to-manage-cancer-pain/" target="_blank">Blog Preston</a>, and on Monday 25th January there will be a feature by <a href="http://www.lep.co.uk/news/health" target="_blank">Aasma Day in our local paper the Lancashire Evening Post</a>.<br />
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I'm not sure whether it will be online, so at the moment the only way you can read it is get your cash out of your pocket and to buy the LEP!<br />
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I'm getting my <a href="http://peoplethinkingaction.blogspot.co.uk/2016/01/nephrostomy-what-works-and-what-does.html" target="_blank">nephrostomy</a> tomorrow, so reading this article should cheer me up!<br />
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<tr><td class="tr-caption" style="text-align: center;">Photo by Sarah Walker of St Catherine's Hospice</td></tr>
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<br />Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com1tag:blogger.com,1999:blog-8816823058695052402.post-80853739079430546312016-01-21T17:28:00.000+00:002016-01-21T17:30:11.340+00:00Nephrostomy: What works and what does not work?Last week I had a procedure to insert a stent into the outlet of my right kidney, to allow urine to empty freely into my bladder. I needed a stent because my tumours have clustered round this outlet and basically clenched it shut.<br />
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I know the urologist who attempted this procedure did his best for me, but he couldn't manage it. He said he had tried for half an hour, and could not even get dye into into the outlet because the grip of the tumours was too strong. Because it is so tightly gripped, it's unlikely that they'll be able to get a stent in from the other direction either.<br />
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The stent procedure failing meant I had gone through a total anaesthetic and quite a painful few days recovery for my bladder and urinary tract, for no outcome. I did feel disappointed.<br />
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So now the alternatives that are left for me are either a nephrostomy, or to do nothing.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi420cjqw36Z8IADldFaEP4J1j52ntbG-IXkzZgyPgJPcuMtm4kO3IVU-wKmtpUdaRafZa5oXngNrZSayHvynjVWi7sr8ZSkZZwDbQzoYPsrGRI6262uhu79n7b6mr9QiDsb22600tbszXh/s1600/nephrostomy+image.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi420cjqw36Z8IADldFaEP4J1j52ntbG-IXkzZgyPgJPcuMtm4kO3IVU-wKmtpUdaRafZa5oXngNrZSayHvynjVWi7sr8ZSkZZwDbQzoYPsrGRI6262uhu79n7b6mr9QiDsb22600tbszXh/s200/nephrostomy+image.jpg" width="145" /></a>A<a href="https://en.wikipedia.org/wiki/Nephrostomy" target="_blank"> nephrostomy </a>is "an artificial opening created between the kidney and the skin which allows for the urinary diversion directly from the upper part of the urinary system (renal pelvis)".<br />
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The MDT that met and talked about this (in my absence!) decided it was definitely the best thing for me.<br />
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I like to think things through for myself too. Ultimately it's my body and me who has to make a life-altering decision like this, so anything that will help me with this is useful.<br />
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Think About Your Life has<a href="http://www.thinkaboutyourlife.org/tools/" target="_blank"> a whole set of tools</a> that can help with the decisions that affect people when they have cancer and other life altering conditions. Another good source for tools is the <a href="http://hdcp.co.uk/documents/144044316832418.pdf" target="_blank">'Living Well' </a>document designed by HSA and Lancashire County Council.<br />
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I decided to use the person centred thinking <a href="http://www.thinkaboutyourlife.org/tools/whats-working-not-working/" target="_blank">'working/not working' tool from 'Think about Your Life'</a> to think about what works and doesn't work for me about having a nephrostomy.<br />
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Here are my own reflections:<br />
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I've shared my thinking here to show how the tool works. Using it is helping me come to terms with the idea of pushing a plastic tube into my kidney and then walking around with a bag of urine for the rest of my life. It's not an attractive prospect I agree, but on balance it's far better than the alternatives, and I have some positive actions to follow up.</div>
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Other actions I'm taking are to seek out other people with nephrostomies, I hope there is a really good facebook group that provides support, similar to the way 'Get Your Belly Out' gives big confidence to ostomates with ileostomies and colostomies. Let me know if you've come across anything like this!</div>
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<br />Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com1tag:blogger.com,1999:blog-8816823058695052402.post-8710329222992638352016-01-19T21:27:00.000+00:002016-01-19T22:34:42.932+00:00Maximising Choice and Control in End of Life PlanningLet's make it clear that I have no intention of dying for as long as possible into the future!<br />
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I intend to take every opportunity I can, despite my stage 4 metastatic bowel cancer to live and enjoy life. If a chance comes up for more chemo or a clinical trial, I'm going to take it.<br />
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However, I also have to be realistic about my condition and where it's likely to take me. I have quite an aggressive cancer that has mutated in unexpected ways. I may have years, in the worst case scenario it is just months.<br />
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Of course it's hard to pin down how fast or slow the process of my death will be. Prognoses are notoriously unreliable and should be treated with caution, as rough guidelines rather than carved into stone. Nobody should get hung up on prognoses, and if anything, they are a challenge to go out and live your life as best you can! It's already clear to me that good planning helps people live as well as possible until they die.<br />
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So I've been reading about and talking to people about 'End Of Life Planning', which I've found out involves a whole range of documents. I've been given packs full of quite daunting legalistic documents, that I feel I would need support from professionals to complete because of the difficult language they use. However, I also got hold of some<a href="http://finkcards.com/products/advance-care-planning" target="_blank"> great End Of Life 'Fink Cards'</a> made by Sarah Russell and Helen Sanderson. These are a much easier way of starting a conversation.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPfOuf8uKqpV7z1TC08TxdxZnhjaJkeW1RUnF26PwwbCJsopBblSN3-FOL-fM3hsfEGTg6C5OB9xOIxHo4M_Z5i-kjxSyzFnsaxcIU3mmsq3hzS_G8yNbxOU6srFZ4e9C_bRjFsyuOpB78/s1600/Advance_Care_Planning_69_compact.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPfOuf8uKqpV7z1TC08TxdxZnhjaJkeW1RUnF26PwwbCJsopBblSN3-FOL-fM3hsfEGTg6C5OB9xOIxHo4M_Z5i-kjxSyzFnsaxcIU3mmsq3hzS_G8yNbxOU6srFZ4e9C_bRjFsyuOpB78/s400/Advance_Care_Planning_69_compact.jpg" width="325" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">An example of one of the Fink Cards</td></tr>
</tbody></table>
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You can sit with your family and take turns to pull out a card, and then have a conversation about the question on the card. It works out you might only end up discussing two or three of the questions, as the conversations can quite quickly become in depth and cover lots of ground. The first time I tried this with my wife, we had been talking about the very first card for about 20 minutes, and it felt like we were really getting somewhere, then my phone rang: it was the hospital who needed me to come back in for another scan! I felt this showed how easily medical priorities can interrupt our personal priorities.<br />
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I have a history of working in <a href="http://peoplethinkingaction.blogspot.co.uk/2013/01/person-centred-thinking-tools.html" target="_blank">Person Centred Planning and Thinking</a> which is all about finding ways to enable the person to put their own most important wishes into the way they are supported, so that what is important to them actually happens in their lives, and they are supported in a way that is consistent with who they are. I was also pretty interested in <a href="http://peoplethinkingaction.blogspot.co.uk/2016/01/atul-gawande-on-end-of-life.html" target="_blank">the questions Atul Gawande has been asking </a>about the things people really need to have conversations about at End Of Life, so that their wishes are truly heard.<br />
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I thought to myself, that, from my own experience, there must be simpler, more person centred ways of creating and capturing information from conversations about our wishes for the end of our lives. Simpler ways that would be more led by the person themselves, and involve their family and closest loved ones as the key decision makers and information gatherers.<br />
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My blogging about the possibilities of creating something useful at end of life was timely <a href="http://peoplethinkingaction.blogspot.co.uk/2016/01/sometimes-blogging-makes-difference.html" target="_blank">because it reached out to other people already thinking about this,</a> including some of the area's leading academics, hospice providers and innovators in health and social care. These people are keen to try out different formats to see what will work best for people.<br />
<br />
So I jumped in by creating a grid with a few important questions down the left, and a timescale going across to see whether it would work for me:<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghlaR0K6R2KBkoKqFM9UToaOGhwe9qQjgUgLyWq1hxyPRpNGL7CtNbyZvQ13VqyEZiaG8kL0c7roRy5vB5mjEXLYXunR2Nf6C-du3xpA6DyG1392Iqg5JCMw_Sf35XYup7S1FUcbmx2wq9/s1600/EOL+Timeline+Planner+Max+Neill+Image.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="344" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghlaR0K6R2KBkoKqFM9UToaOGhwe9qQjgUgLyWq1hxyPRpNGL7CtNbyZvQ13VqyEZiaG8kL0c7roRy5vB5mjEXLYXunR2Nf6C-du3xpA6DyG1392Iqg5JCMw_Sf35XYup7S1FUcbmx2wq9/s640/EOL+Timeline+Planner+Max+Neill+Image.png" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Max Neill End Of Life Timeline Planner</td></tr>
</tbody></table>
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In a way I see this as a very first attempt. I have lots to add and change. I also think the different headings might be tweaked and changed, although I do think they are 'open' enough to contain a lot of what is most important to people at end of life, and much of what Atul Gawande was keen to capture.<br />
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The biggest problem I can see with my format is that it has 25 boxes! The very best tools I've seen in Person Centred Thinking have many fewer, like <a href="https://www.youtube.com/watch?v=VDqERIxM4HM" target="_blank">Michael Smull's "Important To/Important For" </a>or <a href="https://onepageprofiles.wordpress.com/" target="_blank">Helen Sanderson's One Page Profiles</a>. Such a 'big' tool might be too challenging to attempt all in one go, and might be just as daunting as some of those legalistic documents.<br />
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I passed this grid over to Helen Sanderson, who worked on how it might work as a one page tool. She has taken it and done quite remarkable things to it and actually made it into a series of one pagers to reflect how things change over time. Here's a couple of examples:<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_C9f7T-4yu2jKb1EMNI_bDa-t3qp3poJ7xq1b4Ddn6m8W3sq5r6NiQ12x6JJ6TJyz0Mi_xZa-qlv0vKTlxtnw0FyliDqeN-k7-s8SojQh-FE0nyqoAlTbQ9HVWMw5PslHSbzzyivlJZP9/s1600/Max+Neill+eol+One+Pager+Image.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_C9f7T-4yu2jKb1EMNI_bDa-t3qp3poJ7xq1b4Ddn6m8W3sq5r6NiQ12x6JJ6TJyz0Mi_xZa-qlv0vKTlxtnw0FyliDqeN-k7-s8SojQh-FE0nyqoAlTbQ9HVWMw5PslHSbzzyivlJZP9/s640/Max+Neill+eol+One+Pager+Image.png" width="440" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">1 page on my wishes: When I have months to live</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOkBzknZmPo0odHCxurQenKrqOwzrZgZXUD4ImSmcj-_QuG6eItXvVDQkzlzZ26c6aWCRayByNpSXnNa6EXblLCLNpdFtsMYEiRMn2qCp3Dp8BjMaKwmSMDQOMikvGaT_5PjmyaRKv5itz/s1600/Max+Neill+eol+One+Pager+Weeks+Image.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOkBzknZmPo0odHCxurQenKrqOwzrZgZXUD4ImSmcj-_QuG6eItXvVDQkzlzZ26c6aWCRayByNpSXnNa6EXblLCLNpdFtsMYEiRMn2qCp3Dp8BjMaKwmSMDQOMikvGaT_5PjmyaRKv5itz/s640/Max+Neill+eol+One+Pager+Weeks+Image.png" width="442" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One page on my wishes: When I have weeks to live</td></tr>
</tbody></table>
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This kind of brilliant simplicity might offer people a much easier format for their discussions, which they could combine with conversation starters such as Fink Cards. I can see that I still need to do plenty of thinking, and add much more of my own detail in the different headings, but this may be made easier for me and my family and friends by using this cleaner, less crowded 'one page' approach.<br />
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So as far as I'm concerned this is a work in progress. I'd be interested in people's ideas about getting the questions and headings exactly right. A group of us (Helen Sanderson, Sarah Russell, Sharon Hudson and Philip Ball) kicked the various formats around and speculated about how they might be tried out and improved in a practical and invigorating online discussion.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr-6-TmbLXQiD4D4H2o5e2vwoXkA1Ji1bw8hj_Q4VS-JM-Exj2XHp3Z2A_3tN_FZfNlbUBGaML23YYs61qiZlTyVQW70q9X4v6-ZDqcw2Wg9Q5lFUGDPJHqYTzst-bEchn_72NP_r632-z/s1600/Online+fun.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="233" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr-6-TmbLXQiD4D4H2o5e2vwoXkA1Ji1bw8hj_Q4VS-JM-Exj2XHp3Z2A_3tN_FZfNlbUBGaML23YYs61qiZlTyVQW70q9X4v6-ZDqcw2Wg9Q5lFUGDPJHqYTzst-bEchn_72NP_r632-z/s400/Online+fun.png" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Online fun</td></tr>
</tbody></table>
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<br />
We'd love other people to get involved and 'crowdsource' ideas about how we can maximise the way we gather people's end of life wishes so that it works for people and can be led by them, rather than being a 'top down' process dominated by the professionals.<br />
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Also Sarah Russell is going to blog soon about how these ideas for formats fit in with current research, legislation and best practice at end of life, and we will also be bringing the discussion to twitter so that lots more people can join in.<br />
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Watch this space as we'll soon be announcing the date for a <a href="https://blog.bufferapp.com/twitter-chat-101" target="_blank">"Twitchat"</a>. We want to maximise the way people can express their wishes for their end of life care, so the hashtag we'll be using for all these discussions is <a href="https://twitter.com/hashtag/maxeolc?src=hash" target="_blank">#maxeolc</a>. A twitchat is a chance for anyone to join in!<br />
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I would be really pleased if readers of this blog would pitch in with your own experiences of good and bad end of life care, and with your own ideas of how we can create planning formats that really work for people.<br />
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I know your views and experiences will make a difference!<br />
<br />
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<br />Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com5tag:blogger.com,1999:blog-8816823058695052402.post-25524641671512753472016-01-09T13:37:00.000+00:002016-01-09T17:07:51.573+00:00Preston: A Diverse, Welcoming, Neighbourly City?I've lived in Preston for a good part of my life. <br />
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I came here as a very young child, living in the Avenham area, and going to Frenchwood school.<br />
We moved away, but love and work brought me back here when I was in my early 20s. I've been living here ever since, first in Avenham, then in Broadgate.<br />
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One of the great things about Preston has always been it's diverse communities. Lots of different people have come here ever since the Industrial Revolution and it's made the city a real melting pot of cultures and identities.<br />
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I live on a very short street, but we have many religions, ethnicities, cultures and lifestyles all as neighbours, and all getting on pretty well.<br />
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And I'm fascinated (even as an atheist myself) that the area where I live has so many spiritual identities. We have a truly beautiful Hindu Temple with carvings that people should come from miles to see, a couple of fine churches, at least one mosque, the Vajravarahi Buddhist Centre, it's only a short walk to where the world's first Mormon Baptisms took place in the River Ribble, and even our river itself was worshipped in ancient times as the embodiment of the Celtic Goddess Reigh Belisama.<br />
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So when I saw the news that the English Defence League, a badly organised rag tag of soccer hooligans, loners and right wing racists are <a href="http://www.lep.co.uk/news/local/english-defence-league-reveal-preston-protest-plans-1-7664648" target="_blank">planning to come here to Preston</a> to demonstrate, with the intention to stir up trouble against my Moslem neighbours, I was quite upset.<br />
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The EDL claim Preston is facing 'Creeping Sharia', that Deepdale is a 'no go' area for non-moslems (as mentioned by Donald Trump) and object to a new mosque in Grafton Street.<br />
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I see not a shred of evidence of 'Creeping Sharia'. I do know that my next door neighbour is a moslem, and he is a good neighbour who brought round some delicious food (iftar) to us during Eid.<br />
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I live near Grafton St and see no good reason why my neighbour should not be able to worship in a modern clean comfortable space.<br />
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I really would not like to live in the unimaginative kind of Preston the EDL advocate. A monoculture where anything foreign is banned, where thought is regulated through one narrow grey channel, and where the thuggish boot crushes any dissent. A town where neighbour is suspicious of neighbour, where idle pieces of gossip become reasons to intimidate and assault.<br />
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Last time the EDL demonstrated here they had a pitiful turnout. They were met by a well organised disciplined demonstration of local people led by the local Preston Trades Council. Despite this the EDL behaved appallingly and got away with throwing coins and other missiles at the counter demonstration. A friend of mine was there, she said " when the EDL demo was in Preston last time I was in town in the morning, the atmosphere was not nice to say the least. It was very scary and intimidating. Police all over and other groups too. It was a dark day for Preston". Lets hope the police and council don't allow the EDL the freedom to break the law like this again.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://religionama.files.wordpress.com/2012/04/christian_muslim.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://religionama.files.wordpress.com/2012/04/christian_muslim.jpg" width="325" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">friendship between people of different religions is nothing new!</td></tr>
</tbody></table>
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This time I hope the demo against the EDL is even bigger. Here's an invitation from local trades unionists: <br />
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<strong><span style="font-size: large;">"Preston Anti-Fascist Rally</span></strong><br />
Preston and South Ribble Trades Union Council, in conjunction with Unite Against Fascism, are calling on all affiliated trade unions, community and faith groups to come together and oppose the planned “English Def<span class="text_exposed_show">ence League demo” on Saturday, 20th February, 2016.</span><br />
<br />
<div class="text_exposed_show">
More details will follow, once the situation on the ground becomes clearer.<br />
Yours in solidarity <br />
Chris Lomax<br />
President, P&SRTUC"</div>
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If I were well enough I would attend. But I think as a community or set of communities we need to do other things as well. We need to start making more conscious efforts to make links across cultural and ethnic divisions - to meet and get to know each other as individuals and organisations. Lets find ways to share the best of our cultures and build new friendships, so that when the next set of neo-fascists come along trying to spark off racial and religious tensions, they have no leverage to prise apart our different communities and set us against each other.<br />
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Let's make sure Preston continues to be a great place to live and work, for people of every background, for us and for our children.Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com3tag:blogger.com,1999:blog-8816823058695052402.post-78984223931597492802016-01-07T11:12:00.000+00:002016-01-07T11:15:42.958+00:00Learning Journeys and Justice for LB<strong>Max Neill, Dan Goodley, Rebecca Lawthom and Katherine Runswick Cole</strong><br />
<strong><br /></strong>This collaborative blogpost has also been posted at the <a href="https://bigsocietydis.wordpress.com/2016/01/07/learning-journeys-and-justiceforlb/" target="_blank">'Big Society, Learning Disability and Civil Society Research Blog</a><br />
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On the 10th December 2015 the BBC reported the following:<br />
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<strong>NHS trust ‘failed to investigate hundreds of deaths’<br />By Michael Buchanan, Social Affairs Correspondent, BBC News<br /> 10 December 2015</strong><br />
<strong><br /><a href="http://www.bbc.co.uk/news/health-35051845">http://www.bbc.co.uk/news/health-35051845</a></strong><br />
The NHS has failed to investigate the unexpected deaths of more than 1,000 people since 2011, according to a report obtained by BBC News. It blames a “failure of leadership” at Southern Health NHS Foundation Trust. It says the deaths of mental health and learning-disability patients were not properly examined. Southern Health said it “fully accepted” the quality of processes for investigating and reporting a death needed to be better, but had improved. The trust is one of the country’s largest mental health trusts, covering Hampshire, Dorset, Wiltshire, Oxfordshire and Buckinghamshire and providing services to about 45,000 people. The investigation, commissioned by NHS England and carried out by Mazars, a large audit firm, looked at all deaths at the trust between April 2011 and March 2015. During that period, it found 10,306 people had died. Most were expected. However, 1,454 were not. Of those, 272 were treated as critical incidents, of which just 195 – 13% – were treated by the trust as a serious incident requiring investigation (SIRI).<br />
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<strong>Investigations</strong>The likelihood of an unexpected death being investigated depended hugely on the type of patient.<br />
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The most likely group to see an investigation was adults with mental health problems, where 30% were investigated.<br />
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For those with learning disability the figure was 1%, and among over-65s with mental health problems it was just 0.3%.<br />
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The average age at death of those with a learning disability was 56 – over seven years younger than the national average.<br />
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Even when investigations were carried out, they were of a poor quality and often extremely late, the NHS England report says. Repeated criticisms from coroners about the timeliness and usefulness of reports provided for inquests by Southern Health failed to improve performance, while there was often little effort to engage with the families of the deceased.<br />
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<strong>Key findings from the report</strong><br />
The trust could not demonstrate a comprehensive systematic approach to learning from deaths. Despite the trust having comprehensive data on deaths, it failed to use it effectively.<br />
Too few deaths among those with learning disability and over-65s with mental health problems were investigated, and some cases should have been investigated further.<br />
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In nearly two-thirds of investigations, there was no family involvement.<br />
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The reasons for the failures, says the report, lie squarely with senior executives and the trust board. There was no “effective” management of deaths or investigations or “effective focus or leadership from the board”, it says. Even when the board did ask relevant questions, the report says, they were constantly reassured by executives that processes were robust and investigations thorough. But the Mazars investigators said: “This is contrary to our findings.” The culture of Southern Health, which has been led by Katrina Percy since it was created in 2011, “results in lost learning, a lack of transparency when care problems occur, as well as lack of assurance to families that a death was not avoidable and has been properly investigated,” the report says. The report was ordered in 2013, after Connor Sparrowhawk, 18, drowned in a bath following an epileptic seizure while a patient in a Southern Health hospital in Oxford. An independent investigation said his death had been preventable, and an inquest jury found neglect by the trust had contributed to his death. Responding to the report’s findings, Connor’s mother, Sara Ryan, said the entire leadership of Southern Health had to go. She said: “There is no reason why in 2015 a report like this should come out. It’s a total scandal. It just sickens me.”<br />
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<strong>‘Considerable measures’ taken</strong><br />
The report’s authors, who spent months looking into how Southern Health failed to investigate so many deaths, seem to concur. They say: “We have little confidence that the trust has fully recognised the need for it to improve its reporting and investigation of deaths.”In response, Southern Health NHS Foundation Trust said it accepted its processes “had not always been up to the high standards our patients, their families and carers deserve. “However, we have already made substantial improvements in this area over a sustained period of time.”It added: “These issues are not unique to the trust and we welcome the opportunity to shine a spotlight on this important area. “Though the trust continues to challenge the draft report’s interpretation of the evidence, our focus and priority is on continuing to improve the services we provide for our patients.”<br />
It said that when the final report was published by NHS England, it would review the recommendations and make any further changes necessary.<br />
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<strong>‘Shocking findings’</strong><br />
An NHS England spokesman said: “We commissioned an independent report because it was clear that there are significant concerns. “We are determined that, for the sake of past, present and future patients and their families, all the issues should be forensically examined and any lessons clearly identified and acted upon.”<br />
It added: “The final full independent report will be published as soon as possible, and all the agencies involved stand ready to take appropriate action.”<br />
Norman Lamb, who was the care minister in the coalition government, said the findings were shocking: “You end up with a sense that these lives are regarded somehow as slightly less important than others and there can be no second class citizens in our NHS. “The thought is just horrifying and there have to be some answers from the trust.”<br />
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Source: <a href="http://www.bbc.co.uk/news/health-35051845">http://www.bbc.co.uk/news/health-35051845</a><br />
<br />
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++<br />
At the time of writing this blog (Thursday, January 7, 2016) the Governors of this NHS Trust had met to discuss this report and the ‘lack of leadership’ that the report identified in relation to the trust. You can get a bird’s eye view of the meeting here (well at least an edited one):<br />
<br />
<a href="http://www.itv.com/news/meridian/update/2016-01-05/governors-review-damning-report-over-health-trust/" rel="nofollow">http://www.itv.com/news/meridian/update/2016-01-05/governors-review-damning-report-over-health-trust/</a><br />
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Last night twitter responded largely with incredulity but also amazement at the lack of perceived accountability of senior management in relation to the dehumanization of people with the label of learning disabilities in the care of the trust. A response of one of the senior managers of the Trust was that their organisation was on a ‘learning journey’, responding to the report and liaising with other services and professionals in order to, one assumes, improve their service. Without getting into the specifics here, nor the names and personnel, we want to consider learning as a phenomenon, process and practice and offer some advice to them or any professional or service truly interested in changing their cultural practices:<br />
<ol>
<li>Learning is a tricky idea – learning is a very contested idea especially in the field of educational studies. Learning is not simply about gaining new skills or improving one’s competencies. True learning, according to the late great critical educator Paulo Freire, can be found when one’s perspective on the world is truly transformed by encountering the world. We like this idea of learning. And we put it out there as a model of learning. We hope to see those who work with people with learning disabilities – and anyone showing a passing interest in the Mazar report – to be truly transformed in their thinking. We want them to learn again; to learn that people with the label of learning disabilities are human beings, with rights and lives that we must value.</li>
<li>Learning is political – Paulo and his comrades developed an approach to learning that they called critical pedagogy. In short this approach saw learning not simply taking place in the classroom (nor senior management meeting room for that matter) but in the wider world. To truly learn then one has to be part of the world and, crucially interested in changing the world. The Mazar report is a huge kick up the arse to anyone interested in improving the lives of people with learning disabilities. It demands not only accountability for past failings but a commitment to new ways of working with people so-labelled as equal stakeholders, full citizens and fellow human beings.
</li>
<li>Learning should eradicate discrimination – no one ever knows everything nor should they ever think that they do. True learners are always modest, uncertain and questioning. But learners should always be engaged with the inequalities endemic within our society. And learners should desire an end to discrimination and oppression for example in the lives of people with the label of learning disabilities. A learning journey should involve visiting people and destinations in order to learn from examples of good practice and communities that value equity. One destination we suggest is self-advocacy; and there are many groups in the UK who can offer wisdom and advice.</li>
<li>Learning should be uncomfortable – the more we think we know then the more we feel uncertain. We find ourselves outside of our comfort zone; perhaps questioning what we thought we knew in the first place. One response to this is to find an easy answer – or a safe place – that protects us from uncertainty and makes us feel less confused. This is a mistake. Our learning journeys should push us into some difficult spaces and places. And when one finds a location really uncomfortable then perhaps now is the time to move on to another destination for learning.</li>
<li>Learning is a Human Practice – To get to this new destination, anyone wishing to genuinely learn must answer some very political questions that involve human beings and how we learn together:<br />“Who am I going to learn from?”<br />And “How am I going to learn?”.</li>
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These human questions are political and social because we have to recognise how the voices of disabled people and their carers have not been heard in current discourse. They certainly don’t seem to be heard anywhere near enough in the immense task of designing healthcare systems that work for the people that use them. This may seem like a task for the technocrats, and those flashy people who are great at producing organisational flowcharts and speaking inspirationally next to flipcharts – those people are no doubt useful, but the serious work of real learning happens elsewhere, other people must be listened to, involved and empowered first.<br />
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The answer to “who am I going to learn from?” must be from people who are the real experts in their own lives. This means listening to people with disability and mental health labels, with lived experience of how services succeed and fail, and to the people who love and care for them, their families. It cannot be overemphasised that the key to good services lies with listening to the people who use those services. Every layer of the organisation must be committed to learning, and involve itself seriously in listening precisely to these people, particularly and especially those formally charged with power to make change in the organisation.<br />
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The answer to “How am I going to learn?” must be thought about seriously too. Listening to learn from people requires a genuine and quite humble commitment to hear and to act on what is being heard, and services find this very difficult. It’s a process that requires building up longer term trusting relationships because learning is not shared easily or automatically. Somehow a relationship that is often characterised by mutual recrimination and suspicion has to be transformed into one where the people who matter in the process feel genuinely listened to and valued for the contribution they are making. Real listening goes far beyond patronising consultations that some bodies conduct. It to become genuine coproduction, where information is open, hierarchical positions are abandoned, and there is ‘power with’ rather than ‘power over’. A turn of phrase our Paulo would like.<br />
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Listening to and involving people must become part of the everyday life of the organisation, a habit so entrenched it seems natural. The dialogue in such coproductive spaces should be in clear everyday language that enables everyone to be included and to contribute. Time and space can be given to people who need to develop what they are trying to say. It’s a task for the whole organisation, not a little special section tasked with listening on behalf of the organisation, when the real decisions are made elsewhere.<br />
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This process of learning is the opposite of the dehumanisation revealed by the various reports and inquiries. It requires recognising people as human beings with expertise in their own lives, and on the way services impact on those lives. It requires climbing out of hierarchies and interacting in human ways with a serious commitment to listen and make change. The impact of interacting in such human ways changes the values and language of all the people involved, and we hope creates systems where human beings lives are no longer easily disregarded, because they are people we know, people we care about, people who we recognise as human in a fundamental way.<br />
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Our hunch is that perhaps in some organisations the discriminatory assumptions prevalent in society are so deeply entrenched that such fundamental commitment to change from leaders remains a pipe dream. There are two alternatives. One is to decide that such genuine learning is impossible for bureaucratic and market driven service systems and do nothing. We know that if we follow this line nothing will change.<br />
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The other is to decide to make a serious attempt at the change, and cultivate all the spaces where it can and does happen. Maybe learning won’t happen in the hopeful way we describe. We do know that when people with many different perspectives are drawn together, and they genuinely listen and learn to each other, the outcomes can be surprising.<br />
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So, we are all for a learning journey, but where do we want to go?Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com0tag:blogger.com,1999:blog-8816823058695052402.post-239414399372028632016-01-05T20:23:00.001+00:002016-01-05T20:40:03.481+00:00Sometimes Blogging Makes A DifferenceSuddenly, as never before, my blogging is making a difference.<br />
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I've been interested in blogging for a few years now, and posted up lots of bits and pieces. I couldn't say that I've been a serious blogger however. I haven't posted often enough or on consistent topics enough to build a big following. <br />
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Up to now I've used my blog to share ideas and news as a bit of a dilettante. I've never seen it as a way of creating change. This assumption has been completely knocked sideways however with the reaction to my two most recent blogposts: <a href="http://peoplethinkingaction.blogspot.co.uk/2015/12/christmas-in-hospice.html" target="_blank">Christmas in the Hospice</a> and <a href="http://peoplethinkingaction.blogspot.co.uk/2016/01/atul-gawande-on-end-of-life.html" target="_blank">Atul Gawande on End Of Life</a>. Suddenly blogging for me has surged into life. It's become something that is leading real people to take real action, in line with the hopeful title of my blog!<br />
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In those two posts the topics of my writing felt a little unsafe. It felt risky to write about the prospect of my own death, how I intend to prepare for it. How I intend to live as well for as long as possible with the people I love before and until my death happens. <br />
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I decided to be as open, honest and simple in my writing as I dared. I think people who read my blog appreciated this approach. I feel that this led to some major results:<br />
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First of all I noticed that the numbers of people reading the blogposts was unprecedented, people had started getting in touch, and sharing the posts on facebook and twitter. The stats for hits on my blogger account spiked dramatically. It's hard to express how the adrenaline can buzz at the sight of few dry numbers when you know these means hundreds of people are reading and sharing your writing!<br />
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I've since been privileged to be contacted by people living with cancer and their relatives who have got in touch to compare notes. I know from my own experience that there's nothing like making a connection with someone in a similar situation to make you feel less alone. I've had real inspiration from <a href="http://bensbowelmovements.com/" target="_blank">Ben Ashworth whose approach to his bowel cancer is no less than heroic,</a> and by amazing coincidence lives just round the corner from me. I also appreciated the support I got from <a href="http://www.cancerhelppreston.co.uk/" target="_blank">Vine House</a> and from the <a href="http://www.gentleapproach.org.uk/" target="_blank">Preston Gentle Approach to Cancer</a> Group.<br />
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I was also contacted within hours by the public relations person from St Catherine's hospice who has shared the blogpost <a href="https://www.stcatherines.co.uk/christmas-at-st-catherines-hospice/" target="_blank">on St Catherine's own website</a>, which makes me feel truly honoured. We've been talking about how to share some of the messages in my post more widely: I'd like people to understand that hospices help not just in the last days of a person's life, but help people in the way they were helping me, such as helping people find ways to manage their pain. (I also got loads of other kinds of support while I was there, including some handy advice about benefits), more than 50 percent of people using the hospice's support are for similar reasons to mine.<br />
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I'm also interested in understanding what makes the best human support 'person centred'. I think many people at St Catherines showed real person centredness in how they worked with me and other patients: they showed their own humanity and recognised ours too in hundreds of little ways. My previous job as a person centred planning coordinator was about discovering what those hundreds of little ways are and helping more people be able to use them in care settings, so I feel really passionate about this.<br />
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We're putting together a press release with more information about my visit to St Catherine's, and my whole cancer story to see whether this can help improve people's understanding of what hospices and palliative care are for and get across some of the other important messages about achieving the best kinds of human caring, which we hope will feature soon in the local press.<br />
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I was also delighted that<a href="http://www.blogpreston.co.uk/2016/01/opinion-spending-christmas-in-st-catherines-hospice-learning-to-manage-cancer-pain/" target="_blank"> local microblogger 'Blog Preston'</a> was interested enough to share my post on that blog too!<br />
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I'm also delighted by the response from Helen Sanderson towards these posts. Helen is one of those unusual people who is incredibly skilled at taking ideas and making them into something real, that makes a real difference to real people. She has a genius for getting to the crux of what matters, of summarising and simplifying so that the tools and approaches she shares feel easy and natural for many people to use. The <a href="http://helensanderson.net/2016/01/the-first-one-page-profile-why-how-and-when/" target="_blank">'One Page Profile'</a> is a brilliant example of this talent. <br />
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Helen also has a talent for bringing together wonderful creative passionate people with deep values and commitment. This means I'm absolutely blown away to see that my blog is part of what has inspired her to start working on<a href="http://helensanderson.net/2016/01/end-of-life-wishes-on-one-page/" target="_blank"> a tool to gather together people's end of life wishes on one page</a>. Already within a couple of days since I posted at least one hospice and several experts on end of life care have stepped forward via twitter to indicate that they want to be part of trialling such a tool and making it work: A simple tool that helps people facing the end of life gather together what really matters to them and ensures that this becomes part of their support.<br />
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Wouldn't it be wonderful if a tool like this becomes something that really helps many people express and share their end of life wishes, and then truly live well and die well?<br />
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I'm trying to grasp exactly why these two blogposts have precipitated such action and potential change. Partly it is because they are timely, on topics where people are already doing good thinking and have ideas they want to develop. I think however it is also because I am now delving into the well of my own lived experience. I'm writing about difficult times and difficult thoughts and trying not to shrink from expressing myself clearly and honestly, even if that's a little bit scary. <br />
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I intend to continue blogging in this vein, and I'll certainly try to do my part in helping St Catherine's, Helen Sanderson and others with their work around End Of Life. If my prognosis after my last scan is correct, then I would like the experience of the last months of my own life to be genuinely useful to other people.<br />
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I wonder whether I can do this by writing not as an expert, but as a human being. Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com0tag:blogger.com,1999:blog-8816823058695052402.post-11317593402617617612016-01-03T10:00:00.000+00:002016-01-03T10:22:04.720+00:00Atul Gawande on End Of Life<div class="separator" style="clear: both; text-align: center;">
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One of the best current writers about End Of Life is Atul Gawande. He is a surgeon who has spent a lot of time keeping people alive. His thoughts on the terrible price to comfort, dignity and wellbeing of the past medical imperative to keep people alive at all costs are well worth reading, especially in his <a href="http://atulgawande.com/book/being-mortal/" target="_blank">great book "Being Mortal</a>".</div>
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Atul Gawande poses 5 questions that are useful to anyone to people facing the end of their own lives, and the issues they will need to face, along with their families and carers.<br />
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These questions are:<br />
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<span style="font-family: Calibri;"><strong><em>1. What is your understanding of where you are and of your
illness?<o:p></o:p></em></strong></span></div>
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<span style="font-family: Calibri;"><strong><em><span style="mso-spacerun: yes;"> </span>2. Your fears or
worries for the future<o:p></o:p></em></strong></span></div>
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<span style="font-family: Calibri;"><strong><em><span style="mso-spacerun: yes;"> </span>3. Your goals and
priorities<o:p></o:p></em></strong></span></div>
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<span style="font-family: Calibri;"><strong><em><span style="mso-spacerun: yes;"> </span>4. What outcomes are
unacceptable to you? What are you willing to sacrifice and not?<o:p></o:p></em></strong></span></div>
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<span style="font-family: Calibri;"><strong><em><span style="mso-spacerun: yes;"> </span>And later,<o:p></o:p></em></strong></span></div>
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<span style="font-family: Calibri;"><strong><em><span style="mso-spacerun: yes;"> </span>5. What would a good
day look like?</em></strong></span></div>
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<span style="font-family: Calibri;"><o:p>I am struck by how similar these questions are to questions, tools and approaches routinely used in 'person centred practices', tools I learned in my own past practice from teachers I've met and worked with, like Gill Bailey, Helen Sanderson, Michael Smull, John O'Brien.</o:p></span><br />
<span style="font-family: Calibri;"><o:p><br />We found the person centred questions we asked powerful, because they applied as much to ourselves as to the people we were thinking with. They are universal questions that apply to any human being. Of course they are particularly useful when faced with the challenge of a disease or disability, and when the unconscious social response to the presence of such conditions has been to take away choice and control from the person affected. </o:p></span></div>
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<span style="font-family: Calibri;"><o:p>Thinking about questions like these are a way of winning back some choice and control, of working out what is important to you now and in the future and making sure that this happens, rather than being drowned in a sea of other pressing priorities.</o:p></span><br />
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<span style="font-family: Calibri;">A death where the dying person has won back some control over where and how they die, over who is with them, and crucially how they live well in a way that makes sense to them before they die, which has mindfully included what is important to them could be described as a 'person centred death'.</span><span style="font-family: Calibri;"><o:p><br />
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I've already done a little of this thinking for myself, and shared tools like<a href="http://peoplethinkingaction.blogspot.co.uk/2015/05/my-bowel-cancer-one-page-profile.html" target="_blank"> my one page profile</a> and my <a href="http://peoplethinkingaction.blogspot.co.uk/2015/05/using-life-history-to-think-about-past.html" target="_blank">history map</a> on this blog. My most recent scan suggests I need to think more urgently about Atul Gawande's questions and my <a href="http://peoplethinkingaction.blogspot.co.uk/2015/12/christmas-in-hospice.html" target="_blank">recent time staying at St Catherine's hospice</a> gave me a chance to think about this.<br />
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So I've been talking to my wife, who is currently also my main carer (though she doesn't recognise this as a description of her role!). We will be working through some of the tools in<a href="http://hdcp.co.uk/documents/144044316832418.pdf" target="_blank"> 'Living Well'</a> a really good tool for end of life that was designed by people from Lancashire County Council as well as Helen Sanderson Associates. Some examples of them may well get posted on this blog!</o:p></span><br />
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<span style="font-family: Calibri;">I'm really going to have to give some thought to what matters to me. Most of this I'm realising is the people around me. My friends and family, so I'm going to need to think about good ways to spend time with them, and letting them know what they mean to me.</span><span style="font-family: Calibri;"><o:p><br />
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<span style="font-family: Calibri;">One of the major discussions we have been having has been about who our real circle of support comprises. So many different people have stepped forward in different ways to offer us support, including really valued friends who have cooked meals and been there for both me and my wife in a way that I think is unsurpassable. Phone calls and warm messages have reached me from all over the world, and I know that prayers have been said for me in places of worship of many different religions and denominations! One person has kindly given me access to time in her beautiful retreat space. At some point it will be useful to draw together this amazing circle and think with them about the support I'll need at end of life. I hope to get some help with this from <a href="http://community-circles.co.uk/" target="_blank">Community Circles</a>.</span></div>
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<span style="font-family: Calibri;">We've spoken about where I would like to die. My wife and step-daughter both felt really strongly I should die at home. I've been thinking about this. When our son was born at home, I realised how small our terraced house was, particularly with extra midwives, breathing equipment and all the accoutrements of birth packed in. Supporting someone to die must have interesting similarities to helping someone be born. I can see that it will involve a lot of work and disruption for my wife and famly. I also think however with a good circle of support around them it could work and be exactly the kind of death that would make sense for me. I know that when it comes to it, the people I love can help me have a good life right up to my death, and then a dignified death with the people that really matter to me around me, the people who have been my community and who have given my life meaning.</span></div>
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These are the things I'll be putting into my end of life plan. As Atul Gawande said <em>“You may not control life's circumstances, but getting to be the author of your life means getting to control what you do with them.”</em></div>
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</span><br />Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com2tag:blogger.com,1999:blog-8816823058695052402.post-81883778392931609942015-12-29T11:30:00.002+00:002015-12-29T11:48:27.094+00:00Christmas in the HospiceI didn't expect to be waking up on Christmas morning in a hospice.<br />
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But my life's like that now. The results of one scan can throw all my plans up in the air. <br />
And the results of my last scan weren't the best I could have hoped for.<br />
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I'm far from dying yet though. I got offered the place here at St Catherines so that I could get on top of my pain.<br />
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I've been taking the wrong attitude to my pain. I've stoically tried to tough it through during the day, leaving me knackered at night. This approach has meant that I simply haven't left myself open to the joys that life can offer. Most nights I've ended up frantic as the pain bites in: no good for me, and no good for my wife who gets disturbed every time.<br />
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So over some time here, with the help of the nurses and medics my meds are being adjusted, and I'm finding out that stuff I didn't think worked does work, as well as how to space it, how to be less anxious about it. <br />
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And being here has also given me a chance to talk to friends and family about the reality of my illness. I think maybe I tend try to protect people from my bad news. This hasn't done them any favours, and I've been told off about it! The word 'hospice' on the front door means there can't be any pretence. I have a pretty aggressive cancer. It's not behaving like a normal bowel cancer. Even with the very best chemotherapy my chances are maybe one in twenty.<br />
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Of course his doesn't mean I've no chance. I know people who've survived worse odds. I'm hoping to get onto a clinical trial, and will work with Christie if any become available. The lads play Dungeons and Dragons. They know how hard it is to roll a 20 with a 20 sided dice!<br />
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Christmas was lovely here.<br />
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It is a privilege to wake up among the dying. It is a privilege to be cared for by dedicated people, including volunteers who have come in over Christmas and the 'dog end' days of the year to support the people here. When the news is so packed tight with inhumanity, it is a true privilege to see countless small acts of humanity happening, in the very darkest times of the early morning, in the warmth of the cleaner's voice as she moves from room to room, in the humour and stories of the nurses and helpers. <br />
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As I'm writing, a lovely lady has come in. She takes all the flowers donated to St Catherines' and turns them into beautiful smaller arrangements that she leaves in every room. Every few days she comes back to refresh or replace them, she has been doing it for years and nothing seems to stop her. Humanity expressed through her artistry and persistence. <br />
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Years ago I read a great book by Boykin and Schoenhofner that seems to be a well kept secret. It's called 'Nursing as Caring' and it's always stuck in my mind far more than the technocratic rather mechanical ways of theorising nursing care.<br />
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I think the future study of great care, the understanding of what really makes good person centred support for people will actually be an inquiry into our own humanity and how to use it effectively for people. I'm witnessing that when a caring organisation enables everyone in it to find ways to express their humanity, to listen to people and deliver what is important to them, it becomes a true House of Care, a genuinely nurturing environment very different from some of the toxic institutions we seem to create so easily. It's too easy to sacrifice our own humanity in the name of 'professionalism' or for countless other persuasive reasons.<br />
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The Christmas tree in the chapel here is incredibly beautiful. Children have cut out paper angels, and written messages to hang on the tree for their parents who died here: "I hope heaven is special mummy".<br />
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I managed to spend time out at home over Christmas too, and had great family meals on Christmas Eve and Christmas day, great fun playing Articulate! I think the plan is for me to spend a few more days here, then to get home. I'm going to use that time to do some writing. Isabel Allende said <em>"Write what should not be forgotten"</em>. I'm hoping to write some very personal and private stuff for my family and build it into some kind of personal cancer journal that includes some of the person centred thinking tools like my life story, my hopes and fears and a few things I'd like to do. I don't have many big 'bucket list' ambitions. A trip to Disneyland would be my idea of a nightmare! <br />
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I do intend to go to watch the great poet John Cooper Clarke when he appears in Preston, I saw him a few times 30 years ago. He would be the highlight of CND demos in Manchester bringing his cutting cynical humour dispensed in economical rhyme as a great counterpoint to the interminable speeches of the assorted politicians! He's no stranger to death among his friends himself at the moment:<em> "I could go to five funerals a week. But that many vol au vents isn't good for you"</em><br />
Time with family. Time with the people special to me. That's what I'm focussing on right now.<br />
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<br />Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com5tag:blogger.com,1999:blog-8816823058695052402.post-27635933319264099812015-10-02T14:52:00.000+01:002015-10-03T13:07:39.000+01:00Facts and Figures on bowel cancer in Lancashire.If you're looking for facts and figures about the prevalence of bowel cancer in Lancashire, or about survival rates, or how Lancashire compares with the rest of the country, then this is the document for you. <a href="http://www3.lancashire.gov.uk/corporate/web/viewdoc.asp?id=120935">http://www3.lancashire.gov.uk/corporate/web/viewdoc.asp?id=120935</a><br />
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Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com0tag:blogger.com,1999:blog-8816823058695052402.post-52547665521718580412015-09-18T15:14:00.002+01:002015-09-18T15:16:31.222+01:00One Year Since Diagnosis<div class="separator" style="clear: both; text-align: center;">
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On 19th September it will be a year to the day from when I was first diagnosed with a cancer. <br />
It's also about 4 months since the scan that showed that my cancer has metastasised, where I moved up to Level 4 and those words 'incurable' and 'terminal' began to apply to me.<br />
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As you can imagine it's been a year of immense learning.<br />
I've learned a lot about cancer.<br />
I've learned a lot about myself.<br />
I've learned a lot about the warmth of people, and what friendship and family really means.<br />
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I remember the confusion I felt on the first night I spent on the Surgical ward. Apart from the aches that had taken me to the GP's that evening, I felt pretty well. Everyone else on the ward looked to be in terrible distress. All round me were people vomiting green bile, people clearly in agony. I felt like an intruder.<br />
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It's a feeling I still have a lot of the time, because apart from pain, my operation scars and my stoma, there's nothing tangible that tells me I have cancer.<br />
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In the last few weeks a lot of things have been falling into place. I've moved off codeine, which I really disliked because it made me twitchy and anxious, onto morphine, which is controlling my pain much better. I have a MacMillan nurse who is giving me good advice around pain. I'll be discussing end of life planning with her next week. I'm working things out so that I can keep on at work.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4mZ0pjoC9U8n2VTTLlEUbZVwACzThliNRtWJ8K5LGPbVSKLbbhmhND0pnUnkIocM1vzJjvXpYwK8LQvjlR4PUcdP4ZJtuzfBbUKgHR_ZWOduuDSgYykhJaAGRwE0pI_EaEOg2dme_0fkQ/s1600/Gentle+approach+poem.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4mZ0pjoC9U8n2VTTLlEUbZVwACzThliNRtWJ8K5LGPbVSKLbbhmhND0pnUnkIocM1vzJjvXpYwK8LQvjlR4PUcdP4ZJtuzfBbUKgHR_ZWOduuDSgYykhJaAGRwE0pI_EaEOg2dme_0fkQ/s640/Gentle+approach+poem.jpg" width="352" /></a><br />
I have had a scan that shows that while the nodules are still growing, the rate of growth has been considerably slowed down by the chemo. I would have hoped for shrinkage, but I'm told very slow growth is almost as good.<br />
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I've also read <a href="http://www.anticancerbook.com/" target="_blank">Serwan-Schreiber's book 'Anti-Cancer'.</a> This has inspired me to take diet and exercise much more seriously. According to<a href="http://onlinelibrary.wiley.com/doi/10.3322/caac.21220/full" target="_blank"> the stats I've read,</a> 12 out of every 100 men with bowel cancer that has metastasised are still alive five years after diagnosis. I have every intention of being one of those 12, but I also need to plan in case I'm one of the 88. Eating well, including things like turmeric, ginger, garlic, fresh fruit, vegetables and green tea in my diet has already improved how well I feel, and I'm certainly enjoying the taste of my food more than when I was following the advice of the stoma nurses to 'eat plenty of stodge'.<br />
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Last Saturday I attended <a href="http://www.gentleapproach.org.uk/meetings/" target="_blank">Preston's 'Gentle Approach to Cancer'</a> group, and enjoyed my first ever yoga session, which was also the first formal set of exercises I've participated in since my operation. Moving in this way, even once has boosted my physical confidence and made me feel better in my own body. It was great to meet people who are living with cancer, to hear their stories and basically be with people I don't need to explain everything to. We sung the song I've posted in the photo together. In general I find great support from groups of people with experience of cancer in their own lives, like this group, and like the online forums that exist. Nothing beats lived experience.<br />
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I also want to plug my mate <a href="http://www.bbc.co.uk/news/uk-england-lancashire-29400417" target="_blank">Ben Ashworth.</a> He has bowel cancer too, lives round the corner from me and has run 17 marathons in 17 months. He is raising enormous sums for charities. He's a personal hero of mine. He's been living the bowel cancer adventure for about a year longer than me, and is just a wonderful individual.<br />
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My message to people newly prescribed with a cancer, or who have just discovered that their cancer has metastasised is "don't panic". Keep going. Find strength in other people, particularly people who are living with cancer themselves. Find little ways to win more control. Take one day at a time, days turn into weeks, weeks turn into years.<br />
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The <a href="http://www.cancerresearchuk.org/about-cancer/type/bowel-cancer/treatment/statistics-and-outlook-for-bowel-cancer" target="_blank">survival stats for men with a Level 4 metastatic bowel cancer</a> don't look brilliant. Something like <a href="http://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/bowel-cancer/survival#heading-Three" target="_blank">7 in every 100 live for more than 5 years</a>. One question to ask is "why shouldn't I be one of those 7?" another is "What do I need to do so that I have a good life for as long as I can, what do I need to do to make sure my family are OK in case I am one of the 93?"Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com1tag:blogger.com,1999:blog-8816823058695052402.post-19998376735921179832015-05-29T10:51:00.000+01:002015-05-29T10:51:04.655+01:00Using Life History To Think About the Past and Prepare for the FutureThis was originally posted here: <a href="http://connect4life.blogspot.co.uk/2015/05/life-history-and-long-term-conditions.html">http://connect4life.blogspot.co.uk/2015/05/life-history-and-long-term-conditions.html</a><br />
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When I got the bad news that I had a diagnosis of an advanced bowel cancer, even though I had had 6 months following my operation to prepare, it still took me a while to get my head around the idea. I doubt if I've still fully processed it, or properly discussed it with everyone that matters to me, but I'm doing my best to get on with this.<br />
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Getting a serious diagnosis is definitely a time that many of us start to think about what really matters to us. Who we are, what our wishes, hopes and fears are.<br />
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Person Centred Thinking offers a set of tools and questions that help us with this. Using them to think with the people we love, and the people who know us best helps us have those important conversations.<br />
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I recently posted my <a href="http://connect4life.blogspot.co.uk/2015/05/one-page-profiles-for-long-term.html">One Page Profile</a> here which is one example of person centred thinking. I've now shared it with my Oncologist who said she would find it really useful as a way of helping her understand my wishes. She has photocopied it to share with the whole Multi-Disciplinary Team involved in my care. I'll be sharing it on my visits to the Rosemere for chemo, and with the District Nurses who will be looking after my PICC line and taking down my bolus pump and syringe.<br />
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Another tool that helps with this kind of thinking is the 'History and Important Memories' Timeline. I found it in the 'Living Well' document developed by Lancashire County Council with Helen Sanderson Associates. They designed the pack as a way to help people and their families being supported in palliative and end of life care. I've begun to fill it in, and I'm including an example of an early draft here. There is still loads of important detail to include!<br />
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One of the most difficult things about having an advanced cancer is the uncertainty. If you ask your oncologist 'How long have I got then?', they have no way of giving you an answer. I'm starting a course of chemotherapy that might cause the secondary cancers to disappear, shrink, stand still or simply not be effective. It's impossible to say until it happens. If it doesn't work then I hope there's something else to try up her sleeve! I'm meeting people who have walked around with a cancer for 10 years, managing it with chemo, others who have seen their cancers become very aggressive, others whose cancers have gone into remission for no apparent reason. I could become any of these people.<br />
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Stepping back to think about your past is one way to prepare for an uncertain future, and that's how I'm using this 'history' tool. I'm at an early stage, but I'm gradually adding in more and more important events, places and people from my past.<br />
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Filling it in has made me think about some of the formative events and experiences that helped me establish my values as well as the joyful times I've spent with the people that matter to me most. <br />
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It has also made me think about the future quite differently. A few months ago I might have expected the end of the arrow to look like "cancer metastasises - pain and suffering - death".<br />
Instead mine shows " back to work - cancer metastasises - camping trip, holiday in Venice - more chemo". <br />
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I'm already using this different perspective to work with my managers to put together a plan for how I can continue working and avoid major risks while having chemo. I'll also use it to help me prepare my family for some of the tough times and possibilities ahead. I'm learning to say "I have advanced bowel cancer, I'm managing it with chemo and the help of my family, colleagues, friends and the people at the Rosemere unit".<br />
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I'll be working through more of these tools, and sharing them as part of my work with Connect 4 Life. I feel my past experience as a trainer in the world of person centred planning puts me in a position where I can help both service providers and people living with long term health conditions see some of the potential in these tools as a way of regaining some control in life in times that are unpredictable, when it's too easy for others to take over. I'm hoping that by sharing tools like this, I can help services and family carers help many other people facing similar health issues win more control in the direction of their lives and support.Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com0tag:blogger.com,1999:blog-8816823058695052402.post-90611502165020015062015-05-07T11:46:00.003+01:002015-05-07T11:47:31.988+01:00My Bowel Cancer One Page Profile: This was originally posted on the Connect4Life blog: <a href="http://connect4life.blogspot.co.uk/2015/05/one-page-profiles-for-long-term.html">http://connect4life.blogspot.co.uk/2015/05/one-page-profiles-for-long-term.html</a>: thought I would share it here too!<br />
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One page profiles are a simple way that people with long term health conditions can tell our story and express our preferences.<br />
They have a starkly simple format: They have just 3 questions:<br />
<ul>
<li>What people like and admire about me.</li>
<li>What is important to me</li>
<li>How to support me well.</li>
</ul>
Max Neill, who works with Connect4Life as a community connector has just written a one page profile to share with his family, friends, workmates and health professionals involved in supporting him with his cancer.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNRxk3bRka4LIAKKeg5y19nRXgiSd4iE_Ypd5fpmPdOuVJIngSW-H7-AyrJ7h6MXSl5e6NWSf1Jgfr4hVM40g3EdFaNSQo4YlmCYV3mJ-QQ82JY2H8KuEIVFI2MaKfejAb3XHE01sqaXST/s1600/Max+Neill+Cancer+One+Page+Profile.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNRxk3bRka4LIAKKeg5y19nRXgiSd4iE_Ypd5fpmPdOuVJIngSW-H7-AyrJ7h6MXSl5e6NWSf1Jgfr4hVM40g3EdFaNSQo4YlmCYV3mJ-QQ82JY2H8KuEIVFI2MaKfejAb3XHE01sqaXST/s640/Max+Neill+Cancer+One+Page+Profile.png" width="448" /></a></div>
He said "Last September I was diagnosed with bowel cancer and had an emergency operation followed by precautionary chemotherapy. In the last few weeks a scan revealed that despite the chemo, the cancer has metastasised, with new growths on my peritoneum and lymph. Obviously this means that I have a lot further to go on my cancer journey, but as well as being a cancer patient, I'm also a family man, a Connect4Life worker and someone who enjoys a game of Dungeons and Dragons!"<br />
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"I decided to write a one page profile for a few reasons. I thought it would be a good way to gather my thoughts together at a stressful time and express my wishes clearly. I'm going to see my oncologist again next week to discuss my options, and I wanted her to know that I want to do what I can to work towards a cure. I'll share it with people like my ostomy nurse and the district nurses who've been supporting me with my chemo, and the staff at the Rosemere Unit."<br />
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"I'm hoping that it will be a way to avoid having to answer the same questions over and over again!<br />
I like the one page profile because it is so simple, yet it enables you to say so much. It avoids all the medical jargon, and it helps you have the important conversations you need to have at a time like this, both while you're making it, and while you're sharing it."<br />
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"It's too easy in a big busy healthcare system for your identity to be subsumed by your diagnosis. I want to use my one page profile so that who I am comes off the page, and I'm recognised as a person with my own priorities and my own hopes and fears. I think a tool like this would be useful to so many people,<strong> why shouldn't every cancer patient be helped to write a One Page Profile?"</strong><br />
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You can find out more about One Page Profiles by following the links below: <br />
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This is a blog with one hundred examples of One Page Profiles being used in many different ways:<br />
<a href="https://onepageprofiles.wordpress.com/">https://onepageprofiles.wordpress.com/</a><br />
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Here's a blog advocating the use of One Page Profiles with Older People living with cancer: <a href="http://opaalcopa.org.uk/tag/one-page-profiles/">http://opaalcopa.org.uk/tag/one-page-profiles/</a><br />
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Here's Amanda's One Page Profile written around her breast cancer: <a href="http://thinkaboutyourlifeandhealth.com/2013/06/28/using-one-page-profiles-to-direct-cancer-support-amandas-story/">http://thinkaboutyourlifeandhealth.com/2013/06/28/using-one-page-profiles-to-direct-cancer-support-amandas-story/</a><br />
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The Learning Community for Person Centred Practices have shared many examples of One Page Profiles: <a href="http://www.learningcommunity.us/onepageprofiles.htm">http://www.learningcommunity.us/onepageprofiles.htm</a><br />
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Here's a blog showing how One Page Profiles can be used in personalising health services:<br />
<a href="http://personalisinghealth.com/tag/one-page-profiles/">http://personalisinghealth.com/tag/one-page-profiles/</a><br />
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Think About Your Life offers a whole range of thinking resources to people living with cancer, including a template for a One Page Profile: <a href="http://www.thinkaboutyourlife.org/">http://www.thinkaboutyourlife.org/</a><br />
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You can also get in touch with Connect4Life! <br />
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Follow us on twitter: <a href="https://twitter.com/C4LifeLancs">@C4LifeLancs</a><br />
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'Like' us on facebook: <a href="https://www.facebook.com/Connect4LifeLancs">https://www.facebook.com/Connect4LifeLancs</a>Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com0tag:blogger.com,1999:blog-8816823058695052402.post-74759040519650550152015-02-13T15:06:00.000+00:002015-02-13T15:15:59.885+00:00Mindfulness and ChemotherapyI've only really been practising mindfulness for a very short time. I'm just a beginner, but it is very useful to me.<br />
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It began last September when I picked up a leaflet about the <a href="http://www.meditateinlancs.org.uk/" target="_blank">Vajravarahi Centre</a> in Preston, seeing that they did a free half hour relaxation session on Friday afternoons. <br />
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I was worried about how tired I was feeling all the time, and about my various aches and pains, so I felt it might help.<br />
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<a href="http://images.kadampa.org/deities/1081.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://images.kadampa.org/deities/1081.jpg" height="320" width="259" /></a>I ventured in, greeted by an enormous statue of the Buddha facing the doorway. I was directed to the meditation room, where we removed our shoes before entering. This is a beautiful room, decorated with some amazing statues. I was pleased to see everyone was sitting in ordinary chairs, rather than having to sit cross legged on the floor! <br />
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As I attended these sessions, I learned a few very simple techniques: relaxing the body, focussing on the breath, visualising problems and intrusive thoughts as black smoke being exhaled from the body, visualising a ball of nourishing white light that can be breathed into the body, and shifting the seat of consciousness from the head back into the heart.<br />
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The session was followed by tea, the chance to eat a vegetarian meal and have a chat.<br />
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In between the first time I attended and the second time, I was diagnosed with bowel cancer, admitted to hospital, had an operation to remove the tumour and create an ileostomy. After I was discharged from hospital, having this session to attend became a motivation to get out of the house, an opportunity to meet people and I had an inkling that what I was learning would be useful to me.<br />
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Sure enough it was. <br />
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Although the operation had removed all the tumour and there was no sign of any <a href="http://www.cancer.gov/cancertopics/factsheet/Sites-Types/metastatic" target="_blank">metastasis</a>, I was put on 12 cycles of precautionary chemotherapy. In preparation for this, I had to have<a href="http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Linesports/PICCline.aspx" target="_blank"> a 'PICC line'</a> inserted, this is a thin plastic tube that is pushed up a vein in the arm, till it almost reaches the heart, so it can deliver the chemotherapy drugs directly into the body. Once it's inserted it lasts for the full course of the treatment.<br />
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Thinking about a plastic tube being pushed up your vein toward your heart is a fairly alarming and intrusive thought, and the process of insertion causes some discomfort. I used the technique of focussing on my breathing as a way of keeping control, and found that it worked well. I was able to get myself into a zone of relaxation and calmness as the procedure was carried out.<br />
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The first time I had chemo, the PICC line didn't work; it had a tiny hole that the chemo fluids leaked out of, so the line was pulled back out, and I was back in to have it reinserted the next day. The nurses remembered how I'd coped last time and encouraged me to use the same techniques again. I found these techniques worked even better the second time round. Since then I've had no trouble with my line.<br />
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Every fortnight I spend a day at the Rosemere Unit in Preston getting chemo. I've used the 3 hours I spend attached to a chemo drip as a chance to practice mindfulness.<br />
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On my 8th session, this Tuesday, something different happened. As the oxaliplatin was introduced, I sneezed a couple of times, then felt my scalp itching. Next minute it felt as if my scalp was on fire, the palms of my hands turned bright red, and red blotches and an itchy rash came up all over my arms and belly. My chest tightened painfully. It felt as if someone was sitting on me! <br />
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I was having an <a href="http://www.wellness.com/reference/allergies/hypersensitivity-reaction-to-chemotherapy" target="_blank">anaphylactic reaction</a> to the medication. It's where the body's immune system runs out of control. I knew this can be potentially life threatening. I also knew I was in the safest place to be having such a reaction. Literally within seconds of the symptoms showing, the nurses and a medic seemed to appear from nowhere, they had surrounded me, stopped the oxaliplatin, were giving me hydrocortisone, paracetamol and piriton, checking my blood pressure and breathing and hooked me up to a heart monitor.<br />
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As this was happening I remembered the technique of shifting the seat of consciousness back toward the heart. This was a safe place for me to be, where I could observe what was happening to my body and around me, calmly, without panicking. I think a combination of using this technique and the calm competence of the team around me, particularly the way the young oncologist took charge meant that I never felt in any real danger. The drugs worked quickly, the pain subsided and the blotches began disappearing rapidly. Within 20 to 30 minutes I was back to normal. The team remarked on how calm I had been throughout.<br />
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As well as helping me through those painful and potentially alarming moments, I think practising mindfulness has had other effects useful in my everyday life, particularly in how I interact with my family and other people. <br />
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I don't do mindfulness as regularly as I should. I only go to the half hour sessions, rather than the longer ones in the evenings and at weekends, I don't think I do it particularly well. I'm easily distracted, my mind wanders everywhere, I fidget. I feel like I'm at the stage of someone learning to sail a model boat on a pond, rather than the captain of an ocean going liner. Nevertheless, learning a few simple mindfulness and relaxation techniques is helping me cope with a cancer, an operation, an ileostomy and the side effects of chemotherapy, as well as many other aspects of my life.<br />
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You can't knock it if it works!Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com0tag:blogger.com,1999:blog-8816823058695052402.post-46645097601956059552015-01-19T10:44:00.000+00:002015-01-19T10:46:30.705+00:00Sweet CalamineHere's a tip for anyone who has a stoma, and finds that they get red and itchy skin around the stoma area. <br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="clear: left; float: left; margin-bottom: 1em; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQJ8TQ28yZeeqed-z9jOTPGj5M2adB5s8if5bM6kJkwBFo2rS2ghO_8uUNID-4ae2tAnH3VMTuwLOyo5PlwhwFt5QofTQO_lYjXUPKrYJBkgIisYNnViB0zSIPG57yhZV5UVB7RKU0BVNm/s1600/yin+yan+ileostomy.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQJ8TQ28yZeeqed-z9jOTPGj5M2adB5s8if5bM6kJkwBFo2rS2ghO_8uUNID-4ae2tAnH3VMTuwLOyo5PlwhwFt5QofTQO_lYjXUPKrYJBkgIisYNnViB0zSIPG57yhZV5UVB7RKU0BVNm/s1600/yin+yan+ileostomy.jpg" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Here's my ileostomy. It's double barrelled, <br />
and reminds me of the 'yin yan' symbol.<br />
</td></tr>
</tbody></table>
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I had this problem, that was partly solved by using 'stomahesive' paste around the edge of my stoma, so that the fluids in my bag stopped getting directly onto my skin.<br />
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I still found however that just the presence of a bag on top of my skin 24 hours a day was causing it to get irritated; both the area it was on top of, and also skin nearby.<br />
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I also found that my bag wasn't sticking that well. It would leave gaps that made me feel insecure about whether I'd end up getting a leak.<br />
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I found some advice on one of the facebook pages I link to in my post<a href="http://peoplethinkingaction.blogspot.co.uk/2014/12/ostomy-advice-and-resources-blogs.html" target="_blank"> 'Ostomy Advice and Resources'</a> which I thought I would give a go.<br />
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What I did was first to shower with my bag off. This is a great feeling. You can get your stoma and the area around it really clean using wipes provided by your ostomy supplier. It's great to get some fresh air to the area around the stoma too. I'm sure it does it good. Obviously the key to showering is to have everything ready to hand, time spent getting out all your potions and powders, wipes and bags beforehand and putting them in their places is time well spent.<br />
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When I'm washing in the shower, I don't use strong perfumed soaps or sprays near my stoma. I gain confidence from the thought that this is actually my intestine, that's been turned inside out and brought to the surface. When I think about some of the potent curries I've eaten and which all travelled down this tube, I realise it's made of pretty resilient stuff. Nifty work with wipes ensures that if my stoma starts working, I catch anything that it kicks out!<br />
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I dry the stoma and the area around it with more wipes. Then I use calamine lotion. This is the same stuff you use when you have sunburn or chickenpox to soothe and protect your skin. It's cheap, and available in any pharmacy.I use it much more thinly than I would with sunburn or chickenpox. I spread it around the area where my bag is going to stick to. <br />
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If I'm not showering and just changing my bag, some calamine on the end of a wipe is a great cleaning fluid too, getting rid of any leftover adhesive. It's slightly astringent and soothes any redness, it creates a barrier over the skin that protects it from further damage, and when it dries it's slightly powdery, creating a great surface for the bag to stick to. I find that the bag sticks much better on skin that's been treated with calamine lotion, and that it doesn't gap. Combined with stomahesive around the edge of my stoma, I find I have a good barrier and a great seal that lasts much longer than other methods I've tried, and really feels more secure and less itchy.<br />
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If I'm in a good mood, while I'm cleaning myself and applying my new bag, I'll sing "Sweet Calamine" to the tune by Neil Diamond. <br />
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If I'm feeling compassionate, I make sure that there's no one else in the house beforehand.<br />
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Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com0tag:blogger.com,1999:blog-8816823058695052402.post-40539726429471812102014-12-03T14:23:00.000+00:002014-12-03T15:27:03.904+00:00Ostomy Advice and Resources BlogsSince getting my ostomy, I've been interested in the resources available online for ostomates (people with ostomies).<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEje2rzZEsC_yknUzn6S4P6xS4HxMhtNkxFL_T6Ikq0lBdV0z7UN9ueGfsbp3xBMVSqR-NvcUqWsIuNhaNdHCie48JxWwGy6L5tz4r6oOsZ1zmcGRbxvJHB7o_FG3WaKFQX8lFmRIPXRt5T6/s1600/ostomy+bag+get+your+belly+out.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEje2rzZEsC_yknUzn6S4P6xS4HxMhtNkxFL_T6Ikq0lBdV0z7UN9ueGfsbp3xBMVSqR-NvcUqWsIuNhaNdHCie48JxWwGy6L5tz4r6oOsZ1zmcGRbxvJHB7o_FG3WaKFQX8lFmRIPXRt5T6/s1600/ostomy+bag+get+your+belly+out.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My operation scar and ostomy bag</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj1KY2-4EdSWBZXBl-lBmsYAjSR-VsjpSpCOg-2du8wBs_-2kbR39qgqd9Rsrktlq1b5C7JmAwtaeeGOUd60c563_TXLowMAghqL-6Rhs7KHicyujOEtHCE0m9t4lgxX-N3SfqL_-3KPgo/s1600/ostomy+kit.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj1KY2-4EdSWBZXBl-lBmsYAjSR-VsjpSpCOg-2du8wBs_-2kbR39qgqd9Rsrktlq1b5C7JmAwtaeeGOUd60c563_TXLowMAghqL-6Rhs7KHicyujOEtHCE0m9t4lgxX-N3SfqL_-3KPgo/s1600/ostomy+kit.jpg" height="400" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My ostomy kit<br />
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</tbody></table>
An ostomy is simply a surgical diversion of the bowel, so that your poo comes out of a hole in your stomach rather than out of your bottom. I tell people that my bum is now there purely to bring aesthetic pleasure to the world, as while I have my ostomy, it has no other practical use.<br />
<br />
People with ostomies quickly build up a kit, a set of bags, wipes, sprays, pastes, scissors and other bits and pieces. I thought it would be useful to have an online kit of useful websites.<br />
<br />
Particularly useful I think, are people's own blogs, where they share their experiences of living with an ostomy, and the condition that led to them needing one. Lots of bloggers have Crohns or Colitis, others have had bowel cancer, others have urostomies (some people have two bags). Every individual's experience is different, but what unites us all is our stomas and the ways we learn to cope with them.<br />
<br />
One that impressed me today was by Jessica Weatherby called "Guts and Glory". I particularly liked this post on <a href="http://itsgutsandglory.co.uk/2014/11/25/bag-fittings/" target="_blank">Bags Tips and Tricks</a> where she shares expertise that only someone who lives with a bag everyday could gather. Jessica's story <a href="http://www.dailymail.co.uk/health/article-2661209/I-woke-surgery-I-ileostomy-bag-Woman-23-no-idea-nausea-stomach-pain-actually-Crohns-disease.html" target="_blank">featured in the Daily Mail</a>.<br />
<br />
The<a href="https://adventuresofthebaglady.wordpress.com/" target="_blank"> Adventures of the Stoma Bag Lady</a> is another good blog. I love this post <a href="https://adventuresofthebaglady.wordpress.com/2014/10/04/i-cant-fart-five-things-you-might-not-know-about-having-an-ostomy-this-worldostomyday/" target="_blank">"I Cant Fart"</a> which lists 5 things people might not know about ostomies.<br />
<br />
<a href="http://colitisandme.blogspot.co.uk/" target="_blank">Colitis and ME</a> is another great blog - this is by Victoria Marie, a key figure behind the <a href="http://colitisandme.blogspot.co.uk/2014/08/getyourbellyout-part-3.html" target="_blank">'Get Your Belly Out'</a> campaign which encourages people to overcome some of the stigma associated with the stoma, by sharing pictures. Loads of people have done it - the GYBO <a href="https://www.facebook.com/groups/GetYourBellyOut/?fref=nf" target="_blank">facebook page is here</a>, and people are using it to seek and give each other support and advice with all kinds of life issues. Another handy facebook resource is <a href="https://www.facebook.com/pages/MY-BAGS-4-LIFE/1461514624121322?fref=ts" target="_blank">'My Bags For Life'</a>, another ostomate fb community full of positivity and helping. I've had good support and advice from both pages. The <a href="https://www.facebook.com/groups/colostomyassociation2011/" target="_blank">Colostomy Association have a private facebook group</a> which currently has 2739 members!<br />
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The Great Bowel Movement is a blog that aims to <a href="http://thegreatbowelmovement.org/why-talking-about-poop-is-important/" target="_blank">keep people talking about poop</a>:<br />
<br />
"We see our community fighting hard for this, doing their part in social media, through blogging, and through <a href="http://thegreatbowelmovement.org/ibd-tshirts/why-ask-me-crohns-shirts/" title="Why These Shirts?">starting conversations</a>, to make IBD and ostomies household names of topics of conversation. We seek opportunities to share our stories and bring all the aspects of these diseases into light, to tell everyone that we can about IBD.<br />
But sometimes these awareness efforts have a sneaky side benefit, and that’s to help ourselves. Often when we present the question “What’s one thing you would tell to someone newly diagnosed?” one of the most common responses is, “You’re not alone.” You are not alone. You aren’t being singled out, you’re not the first one to go through this, and you’ve got a huge community of others that understand and want to lend support. And the value in putting our stories out there, not just for people unfamiliar, but for people intimately familiar, is priceless"<br />
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This story about <a href="https://scopeblog.stanford.edu/2012/09/24/no-day-on-the-beach-a-colon-cancer-survivors-story/" target="_blank">Mark's Day on the Beach</a> is worth a read:<br />
<br />
"My family and I have always enjoyed the beach, and our goal this past summer
was to spend time on one, soaking up the sun and swimming in the ocean. I had a
little challenge, though: I’m a one-year colon cancer survivor with a permanent
colostomy and a small hernia alongside my stomach. My stomach bulge is bigger
than the average person’s, and that’s something that can’t be hidden on a
beach"<br />
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<a href="http://prettygutless.tumblr.com/post/70924050605/ever-wanted-to-know-how-to-change-an-ileostomy" target="_blank">Pretty Gutless posted this great guide on how she changes her ostomy bag</a>. It's on tumblr, which made it easy to illustrate with loads of photos, stage by stage, which makes it really easy to follow.<br />
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I don't think any list of Ostomy blogs would be complete (not that this list is complete by any means!) without <a href="http://stolencolon.com/" target="_blank">Stolen Colon,</a> this collects together lots of different people's stories. There's some great advice here on <a href="http://stolencolon.com/passing-gas-farting-ostomy/" target="_blank">what to do when your bag gets filled with gas</a>.<br />
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A great Youtube Channel by an Ostomate is Laura's blog <a href="https://www.youtube.com/user/Ostomystory" target="_blank">Ostomystory.</a>
Here's an excellent account of how she changes her stoma bag, it's had over 150,000 views!<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/bpGfcd7RL4o" width="420"></iframe><br />
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There are plenty of myths and fears around ostomies and <a href="http://www.bloodpooptears.com/ostomy-myths/" target="_blank">Blood Poop and Tears</a> does her best to clear up 13 of them. Here's myth number 10:<br />
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"<strong>Myth #10 – I don’t know anyone with an ostomy</strong><br />
We are sneaky little MFers. Trust me if we don’t want you to know, you won’t. I once had a friend ask me ” Are you wearing your bag?”, (as if I had a choice). Ostomies are easily hid and concealed. Before I had an ostomy I was always shocked when I met someone who had an one because they didn’t have a sign on their head or a swarm of flys around their poop stench. We look just like you do."<br />
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One of the really best blogs is <a href="http://www.veganostomy.ca/" target="_blank">Vegan Ostomy.</a> Being vegetarian or vegan with an ostomy has an extra set of challenges all of it's own, but this blog is rich in advice and resources that will be useful to everyone, including meat eaters. Nearly all the blogs I'm coming across are by women, so I was really pleased to see this post with a <a href="http://www.veganostomy.ca/2014/11/dressing-with-an-ostomy-clothing-guide-for-men.html" target="_blank">clothing guide for men.</a><br />
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I've given a bit of advice of my own. Here I talk about <a href="http://peoplethinkingaction.blogspot.co.uk/2014/10/stoma-stigma-shit-and-cancer.html" target="_blank">challenging stigma around stomas and cancer</a>, and here I give some of my own <a href="http://peoplethinkingaction.blogspot.co.uk/2014/11/tips-for-getting-through-chemotherapy.html" target="_blank">tips for getting through chemotherapy</a>.<br />
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If you want to do more than connect online, there are support groups out there. <a href="http://www.eakincohesiveseals.com/support-groups-can-make-living-with-a-stoma-easier" target="_blank">Eakin Cohesive has made a list of many groups around Europe and the Anglophone countries</a>. They've also put up a pretty good list of some of the <a href="http://www.eakincohesiveseals.com/a-guide-on-the-best-online-resources-for-ostomates" target="_blank">various online resources</a> for ostomates.<br />
<br />
I know that I've really only scratched the surface of some of the really great blogs and accounts that are out there, many of the blogs I've linked to link on to great lists of bloggers. If you know of a blog or website I've overlooked here (or write one yourself), I'd love you to share a link to it in the comments below, you'll be helping me by making my blog more comprehensive, and giving me and anyone who reads this post more of the information we need, as well as promoting your own blog!<br />
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I'm also hoping at some point to put up a list of great twitter accounts that cover ostomies (for example <a href="https://twitter.com/uncoverostomy" target="_blank">@uncoverostomy</a> who also blogs here <a href="http://uncoverostomy.org/blog/">http://uncoverostomy.org/blog/</a> and <a href="https://twitter.com/ColitisNinja" target="_blank">@colitisninja</a> , many of the people I've already mentioned are also on twitter - I'm always looking for new people to follow, so if you want to share your twitter handle, you can post that below too!Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com0tag:blogger.com,1999:blog-8816823058695052402.post-32997038552081003402014-11-20T12:51:00.000+00:002014-11-20T13:32:59.417+00:00Tips for Getting Through Chemotherapy<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaHsK4CIC6Q5o3R5KjiZyhth35SgSPNSd7fNohmGP82wvg32cWgy25ZmcHFwqr6hX1XhCnlmZTdHrRs0zI-2clbdVO_f2jfmZGfsiUeYMV5-gWbf8XwMQjM6AZbLXTiZEQVi_9DoBW7gvN/s1600/Chemo+Rocker.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaHsK4CIC6Q5o3R5KjiZyhth35SgSPNSd7fNohmGP82wvg32cWgy25ZmcHFwqr6hX1XhCnlmZTdHrRs0zI-2clbdVO_f2jfmZGfsiUeYMV5-gWbf8XwMQjM6AZbLXTiZEQVi_9DoBW7gvN/s400/Chemo+Rocker.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Chemo-rocker</td></tr>
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My bowel cancer surgery was conducted as an emergency, so I didn't have time to worry about it. I only really began to understand what had happened about three or four days after it was a fact.<br />
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Chemotherapy on the other hand, gives you plenty of time to worry! Better than worrying is preparation, so I've tried to approach my chemo in the best way for me. I've tried to condense this advice into 12 simple hints and tips which I've listed below.<br />
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I've often thought one of the most arrogant things you can do is to give people advice. Especially advice on life changing events like cancer and chemo. But then I looked around for advice on chemo, and didn't find enough of the kind I wanted. I wanted to hear from people who had gone through it and who knew some of the pitfalls. <br />
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There are some great blogs, tweeters and facebook groups out there if you're prepared to look for them, I think in these days when people are talking about 'empowering patients' we need to do more to connect together to give the patient's perspectives and experiences as loudly as those of the professionals. A key thing is that as someone facing a disease like cancer, you actually need to think about your whole life, and what your real key priorities are, as well as learning how to manage your life under your new circumstances, and this can be about a lot more than just the pure medical information you can get, which is important, but is really just part of the story. One useful website that really helps with this is <a href="http://www.thinkaboutyourlife.org/">"Think About Your Life</a>" which helps you do exactly that. <br />
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One useful tool that will really help on that site is the <a href="http://onepageprofiles.wordpress.com/?s=cancer" target="_blank">'One Page Profile',</a> which you can use to tell people around you, whether they are health professionals, friends or family what is important to you and how to support you well. I'm spending a lot of time with District Nurses, Stoma Nurses and at appointments that eat up your week - a one page profile can be something that saves time during these meetings and lets these people know more about who you are and what your priorities are.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKMLPAmZLQ4FHKNgIrmlCa86YdRTmud9HCcHlT5vAVcaYkRSuCLKsIvf82vxR6QaLtZa7g-wHSe8g8A_DS8q-bvkbA2zTEI-vOJY8KnBcTZ98pSNkK4VfY0BmFwpMDtrrd4YskeHxyFO7m/s1600/Ood.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKMLPAmZLQ4FHKNgIrmlCa86YdRTmud9HCcHlT5vAVcaYkRSuCLKsIvf82vxR6QaLtZa7g-wHSe8g8A_DS8q-bvkbA2zTEI-vOJY8KnBcTZ98pSNkK4VfY0BmFwpMDtrrd4YskeHxyFO7m/s400/Ood.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This bolus syringe and vacuum makes me look like one of the Ood!</td></tr>
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Anyway at the risk of being arrogant, here's a list of my own tips that I'm following to help me get through my chemo. Not all will apply to you. You might like to tell me a few of your own.<br />
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1. Get in touch with other people going through the same thing. Read their experiences and learn from them. Don't expect that your experiences will be identical. There's a huge range of reactions to chemo. Some people have a really hard time, other people run marathons in between sessions and raise thousands of pounds for charity. Everyone is different. Don't get too scared by the worst horror stories, and don't feel that you have to be running marathons too. Work out a way of getting through that works for you in your life and situation. Peer support groups work for some people, because we gain strength and power from each other when we share our experiences in a positive way.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheozUlJCloubqPjLLSuNA7WKpfkDdZA66faolwrrw1D8Df3cO5SoxwzHSMez8v2FWmIn1MGxvP23PX8WPk-scRh7TsNL7VZFKUL9KtEY9Htllcs9euRksT_IL0rnXVCgTTteXUphgPL9sA/s1600/ood1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheozUlJCloubqPjLLSuNA7WKpfkDdZA66faolwrrw1D8Df3cO5SoxwzHSMez8v2FWmIn1MGxvP23PX8WPk-scRh7TsNL7VZFKUL9KtEY9Htllcs9euRksT_IL0rnXVCgTTteXUphgPL9sA/s400/ood1.jpg" height="200" width="320" /></a></div>
2. It's OK to feel like shit. I watched a video where one of the people said "It's all about your attitude, if you have a good attitude nothing can stop you". This is only partly true. Chemo will damage some of your healthy cells as well as some of your cancer cells. You will feel various kinds of discomfort. "Attitude" cannot prevent this, though it can affect how you feel about this. Cancer, chemo and the way the medical system is organised all take away a lot of the control we previously took for granted over our bodies. What we can control is how we react to this.<br />
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3. Mindfulness exercises might help: I've been attending mindfulness classes that have really helped me deal with some of the pain and discomfort. Exercises such as focussing on your breath, and returning to your breathing when you notice that your mind has been filling up with thoughts were particularly helpful during the insertion of my PICC line. Here a plastic tube is inserted into a vein and pushed up so that it can deliver the chemo right next to your heart. For someone with my imagination, it would be very easy to panic when thinking about this happening. Calming myself through this focus on breathing really helped me relax. There are lots of places that offer mindfulness these days, so look around for them. If you find that during your class you are invited to visualise yourself as a four-faced 12 armed blue faced sex god, maybe you've found a group that's going a little bit further than everyday mindfulness! (but hey, it might be fun!). <br />
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This is a pretty good book on mindfulness that avoids all the esoteric religious stuff, and that has some good exercises and a CD: <a href="http://www.amazon.co.uk/Mindfulness-practical-guide-finding-frantic/dp/074995308X/ref=sr_1_1/275-9958178-5278725?ie=UTF8&qid=1416486874&sr=8-1&keywords=mindfulness+a+practical+guide">http://www.amazon.co.uk/Mindfulness-practical-guide-finding-frantic/dp/074995308X/ref=sr_1_1/275-9958178-5278725?ie=UTF8&qid=1416486874&sr=8-1&keywords=mindfulness+a+practical+guide</a><br />
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4. Gather support from family, friends, work. Giving people an opportunity to help you in big or small ways benefits them as well as you! Some people do this naturally and informally, others might need more formal support through something like a<a href="http://www.communitycircles.groupsite.com/link/go/123669066" target="_blank"> Community Circle.</a><br />
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5. Get regular exercise. Find a way of getting exercise that works for you. I've been walking my step-daughters puppy, when I've been feeling up to it. It definitely does me good.<br />
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6. Drink plenty of fluids. Flush those drugs out of your liver as quickly as you can!<br />
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7. Look after your mouth. Brush your teeth and use mouthwash.<br />
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8. Be careful with cold air and cold drinks. I bought a bandana from a camping shop to put over my mouth when out in the cold.<br />
<br />
9. Look after the skin on your hands and feet. The unit where I get my chemo gives out free handcream, so I start using this a couple of days before my chemo session and continue all the time the pump is in.<br />
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10. Keep an eye on your temperature. The big risk in chemo is <a href="http://www.cancer.net/navigating-cancer-care/side-effects/neutropenia" target="_blank">'Neutropenic Sepsis'</a>, which is where your immune system, weakened by the chemo becomes overwhelmed by bacteria that at other times would have been no threat to you. Get a thermometer. You'll be told to eat the same diet as a pregnant woman, avoiding soft cheese, pate and suchlike and to cook all your food really well. Wash your hands, stay away from people with colds and flu, No reason to take daft risks! If you do notice your temperature rising, don't hang around, anything over 37.5 celcius is an emergency. You should be given a number to call and a card to put in your wallet at the very least.<br />
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11. Give yourself treats. I've bought in cakes, chocolate drinks, sweets (especially jelly babies which thicken up the output into my stoma). I've had trips with my sons to the cinema. Some cancer charities offer complementary therapies like reiki, massage and art therapy, Find out what's available to you locally, and make the most of it. If anyone is caring for you, see if the same services are available to them. They deserve treats and support too!<br />
<br />
12. Ask your doctors and nurses questions. Try to get as much control back as you can! One thing they don't tell you is that it's the awkward patients who argue and question their treatment that tend to have the best survival rates and outcomes, especially compared to people who meekly put up with whatever treatment the health system dishes out.<br />
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Please feel free to add your own hints and tips below! Let me know what worked best for you.Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com0tag:blogger.com,1999:blog-8816823058695052402.post-80254813622323486542014-11-13T10:42:00.001+00:002014-11-13T11:40:23.998+00:00Luck and CancerYou are walking down the street. A piano crashes to the ground beside you. It turns out, that it was being hoisted into the upper floor of a nearby building in the unlikely way that happens in films and dreams. You are completely unscathed. You walk away shaken by what might have happened.<br />
One by one, the people you meet tell you "You were lucky!".<br />
<br />
I've always felt in similar situations, that you might have been luckier NOT to have been nearly hit at all, and that simply not being in the square metre of space that the piano suddenly came to also occupy might not necessarily be a sign of great fortune or that someone is smiling on you. Whatever the logic though, there's something about the way we think that means whenever something really bad NEARLY happens to us (but not quite), we always feel incredibly lucky, however nice it might have been for the bad thing not to have even thought of happening at all.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzb5t8nHl3ihHSbxnomWdg23M-h3o8a0mx2rX-Lxzf24poMKl1hnyIceyEXPCJ2zX3oocqyiB9TzBeNLDqp-sP9HC4BlkNDaV8OIbci_pxt7INW05KMFAHPwgr__ovCVy87fAzOilLDDuP/s1600/49.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzb5t8nHl3ihHSbxnomWdg23M-h3o8a0mx2rX-Lxzf24poMKl1hnyIceyEXPCJ2zX3oocqyiB9TzBeNLDqp-sP9HC4BlkNDaV8OIbci_pxt7INW05KMFAHPwgr__ovCVy87fAzOilLDDuP/s1600/49.jpg" height="400" width="232" /></a>Being a cancer survivor is making me think again about my luck though. Obviously nobody would choose to have bits of their bowel removed, to wear an ostomy bag, to pump chemotherapy chemicals into their bodies, but I've met so many people in the last few months whose lives would have improved so much just from the chance to do any of those things, let alone all of them. <br />
<br />
And here it starts to sink in how lucky I am. <br />
<br />
I got treatment promptly because I saw a locum who wanted to do everything right. This meant I got the problem sorted before it got too advanced. Compared with many people facing cancer, I'm young and physically strong, enabling me to be strong enough to cope with surgery and with therapies that put considerable strain on the body. A 70 year old guy in the same ward as me had to do a test where he rode a bike before he could get surgery. He told me he couldn't even turn the pedals, so he wouldn't get the surgery. Much better to get cancer when you're young.<br />
<br />
I have the incredible luck to live in a country where the people fought for a National Health Service. So I've watched highly paid professionals lining up medications, the cost of which I wouldn't even dare to ask. In other countries the cost of a cancer treatment would break a family, over and over again. Here nobody checks my insurance records, the care is provided. Free. Unconditionally. <br />
<br />
On top of this, we have a society where there is statutory sick pay. My family will be able to live through this time. We take it for granted, but for the vast majority of people living on the planet, there is no such safety net. Life is far more precarious.<br />
<br />
And I'm just so lucky in the sense of the circle of love and support that's grown around me. Family, friends and work collegues who have gone out of their way for me. C<span data-ft="{"tn":"K"}" data-reactid=".9r.1:3:1:$comment10152340814952257_10152340832267257:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".9r.1:3:1:$comment10152340814952257_10152340832267257:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".9r.1:3:1:$comment10152340814952257_10152340832267257:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">ards, phone calls, meals, people have travelled hundreds of miles to see me, lifts and other support has been offered, not to mention new tendrils of community such as the lively facebook pages for baggies and ostomites.</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".9r.1:3:1:$comment10152340814952257_10152340832267257:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".9r.1:3:1:$comment10152340814952257_10152340832267257:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".9r.1:3:1:$comment10152340814952257_10152340832267257:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"></span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".9r.1:3:1:$comment10152340814952257_10152340832267257:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".9r.1:3:1:$comment10152340814952257_10152340832267257:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".9r.1:3:1:$comment10152340814952257_10152340832267257:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"> Most incredible of all has been Lorraine whose held it all together under immense pressure. It's been really great to know that I know so many loving and generous people! </span></span></span><br />
<br />
If this seems like a session where I am "counting my blessings", I guess that it is. I'm counting them and finding that they're multiplying faster than I can count them. While the language that reflects such blessedness tends to be religious language, it's clear to me each of my blessings has begun in a human heart - they're products of a caring community, ethical workplace, loving family, and they are abundant.<br />
<br />
I've a way to go yet. 11 more chemo sessions. I'm not looking forward to them. Don't let anybody tell you that there is anything to learn from pain, apart from how crap pain is. If there is a gift that cancer brings is the opportunity it gives for people to reach beyond everyday help and share a little bit more, those moments when human beings comfort and help each other in difficult times. My blessing is to have benefitted so much from so many of these moments since my cancer was discovered.<br />
<br />
So should we call it luck? Abundance? Human Solidarity? Love? Something is working for me, and I'm so thankful for it.<br />
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<br />
<span style="font-size: large;"><span style="font-size: x-large;">"When you realise how perfect everything is, you will tilt your head back and laugh at the sky..."</span> </span><br />
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<br />Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com0tag:blogger.com,1999:blog-8816823058695052402.post-1246393853968642662014-10-16T16:43:00.001+01:002014-10-16T16:44:40.940+01:00Poem To My StomaI wrote this little poem in my hospital bed, just a couple of days after the operation where my ileostomy was fitted, (maintaining the traditional connection between poetry and morphine).<br />
<br />
<em>To My Stoma:</em><br />
<em></em><br />
<em>Today I learned</em><br />
<em>That if I wish to survive</em><br />
<em>I have to expose</em><br />
<em>A little of my inside to the outside.</em><br />
<em></em><br />
<em>This is required</em><br />
<em>Even when all that comes out</em><br />
<em>Is shit.</em>Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com0tag:blogger.com,1999:blog-8816823058695052402.post-59287389312854388812014-10-15T13:38:00.000+01:002014-10-15T14:50:08.012+01:00Stoma Stigma and CancerI've had an eventful month. <br />
<br />
On Friday 19th September I was at work. That evening on the way home, I nipped in to the GP for the third time about the vicious aches and pains I'd been getting in my gut. I'd been several times before and been given antibiotics for suspected diverticulitis. These hadn't worked.<br />
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This time I had a locum GP, and in the way of the newly qualified person, he gave me a really thorough examination. Thanks to his particular attentiveness, by the end of the session, I'd been booked into the surgical assessment unit. "Pick up some pyjamas and get yourself up there". Of course the first thing I picked up was my mobile phone. No way was I going to be stuck in hospital over the weekend without twitter and facebook!<br />
<br />
By Monday I'd had my scans and tests and was underneath a huddle of sweaty anaesthetists pressing on my throat and watching my consciousness evaporate.<br />
<br />
It turns out my aches, pains and brain fog I've been getting over the last 3 months or so had been caused by a cancerous tumour in my bowel, about 7 cm long by 8 in diameter. This was whipped out, before I really understood it was even there, along with 10 inches of bowel that it had blocked. <br />
<br />
Because the ends of my bowel were too infected to tie back together, I had an ileostostomy fitted. An ileostomy basically brings the now loose ends of your your bowel to a hole made in the surface of your stomach, so that you defecate through this new hole rather than out of your bum. (I am talking shit here, and there's no polite way to put it!).<br />
<br />
After a few days of morphine, catheters and cannulas, I'm back out of hospital now and on the road to recovery. There's no sign of any further cancers, and soon I'll be embarking on a 6 month course of precautionary chemotherapy to improve the odds of making sure that no cancers return.<br />
<br />
The signs that anything has happened are the scar that runs down my stomach and across my belly button, that is healing nicely, and the skin-coloured bag that sits on the right hand side of my belly and occasionally farts or gurgles.<br />
<br />
I empty this stoma bag by kneeling in front of my toilet and unfastening a flap at the bottom, the faeces comes out as a rich brown semi-liquid. As well as emptying these bags, I change them every couple of days. There are occasional inconveniences - such as leaks, and this morning when I jumped out of bed and rushed downstairs to answer the phone, the bag actually burst (DISASTER!). As far as I can see this is effectively 'the worst that can happen', and a bucket, cloth and some disinfectant soon sorted out the problem. Worse things happen at sea.<br />
<br />
Answering the phone at my own pace when I feel fully ready is my new strategy.<br />
<br />
The advantages of the stoma massively outweigh ALL the inconveniences. The first meal I had when I got back from hospital was a STEAK SANDWICH. I haven't been able to eat steak for at least 5 or 6 years. I'm now eating all kinds of food I could never have dreamed of eating before, and I don't know if it's my imagination, but food actually seems to taste better. <br />
<br />
Frankly I'm really pleased with it. I'm calling it my 'bag for life', because it does just that; keep me alive. It has got rid of the pain, it is enriching my eating experience.<br />
<br />
About 3 days after mine was fitted, I was lieing in my hospital bed. A tall, strong man in his 70s had been admitted into the bed next to me, and I heard the doctor discussing his case with him and his wife: he had a very similar issue to me, a blockage that needed to be removed in his bowel. "We'll need to give him a stoma bag". "That will NEVER happen" said his wife, her voice trembling in that moment, that the man she loved, a man of strength and dignity might need to use such a device, even though it was clear the only alternative would be death. This moment of acute personal love and fear really brought home to me the level of stigma that still exists around colostomies, ileostomies and stomata. <br />
<br />
Social stigma and fear like this about devices that actually help us live definitely don't help people who have quite enough to face up to dealing with pain and surgery. When the doctors had gone, I talked to both of them about my own stoma, and tried to show how simple and practical it was for me; that it was not so awful.<br />
<br />
I heard <a href="http://www.bbc.co.uk/programmes/b04kf8pv" target="_blank">Lynda Bellingham discussing her own bowel cancer on Radio 4,</a> right around the time I was in hospital myself pointing out that the British "Don't do cancer and don't do poo". We need to change this. As the mystics say: "No mud, no lotus".<br />
<br />
Looking at the websites and brochures brings home that 90% of the technologies around ostomies are based on concealment - there are all kinds of elaborate methods of making these devices invisible and inoffensive, as if the ostomy is something to hide away, a dark secret, something to feel ashamed and embarrassed by.<br />
<br />
<a href="http://www.stomawise.co.uk/wp-content/uploads/2013/04/maggie-main.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://www.stomawise.co.uk/wp-content/uploads/2013/04/maggie-main.jpg" height="277" width="320" /></a>This however is changing: Having got my own stoma, I started searching twitter for anyone else in the same situation. Turns out there's <a href="http://ileoatlas.wordpress.com/2011/12/30/10-things-about-having-a-stoma-they-never-tell-you-in-no-particular-order/" target="_blank">a small but lively underground movement of 'ostomates' (like the 'Ileo Atlas') who share tips and problems</a>, and who even photograph and share their stoma pouches (I've taken one of Maggie Baldwin from the <a href="http://www.stomawise.co.uk/news/ostomate-of-the-month-april-2013" target="_blank">'Stomawise' website</a>) and one of <a href="http://ostomatevillage.wordpress.com/get-to-know-an-ostomate/jason-mcintosh-awestomy/" target="_blank">Jason McIntosh from Awstomy</a>. On twitter there's a whole hashtagful, under #getyourbellyout.<br />
<br />
I'm massively in awe of these people. They straight away made me feel better about my own stoma, and by being so open they are helping lots of other people too. I'm planning at some point to take my own stoma photo to share too. I think it will be a good step for me to take, so watch this space! When people build communities together to resist and challenge stigma, something powerful is happening.<br />
<br />
<a href="http://ostomatevillage.files.wordpress.com/2012/12/jason-scar-awestomy.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://ostomatevillage.files.wordpress.com/2012/12/jason-scar-awestomy.jpg" height="239" width="320" /></a>I've also found a few collections of quite colourful and funky stoma pouches. These seem a lot more fun than the bland flesh-tone ones. I don't know yet if I'd be able to get these more groovy pouches on prescription!<br />
<br />
The history of the stoma is really fascinating. One really key fact is that the surgeons imagination tended to stop at the surgery. <a href="http://www.stomaatje.com/history.html" target="_blank">It was the people with stomas themselves who advanced the technologies of the pouch to what they are today</a>, making them into something that people can live with practically in everyday life.<br />
<br />
And I suppose this is what human beings keep doing. We adapt ourselves to circumstances, find new ways to live, and by doing so, find new ways to create our own resistance to some of those prevailing social fears about shit and cancer.<br />
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I've had my stoma for about 3 weeks, so I am still learning more about it, and about all the people I never really thought about before, who have great lives because they have stomas. I'll keep blogging to share what I'm learning. I'd love to hear your stories too!<br />
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<br />Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com0tag:blogger.com,1999:blog-8816823058695052402.post-41097451614239954762014-09-03T10:35:00.002+01:002014-09-03T10:35:29.428+01:00Chris and Joe challenge bullyingHere's a story I heard the other day. It's second/third hand, but I'm as sure as I can be it's true, I've made up all the names.<br />
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It started about 4 years ago in a Further Education college in North West England.<br />
<br />
You don't need to know much about this college, it's very much like many other FE colleges, apart from the fact it has a culture that takes sport very seriously, particularly rugby. Let's say if you're in the rugby team, you're <em>somebody</em> at this college.<br />
<br />
The college, just like many others has an education programme for disabled students, and like most other colleges, 'integration' didn't automatically happen just because disabled and non-disabled students shared some of the same spaces. <br />
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One day, Chris a disabled student was in the canteen getting lunch, when a few of the students started to pick on him. Chris stood out because of his size as well as his disability, and this made him a regular target for all kinds of micro-aggressions.<br />
<br />
It started with those 'jokey' remarks that aren't really jokes. It was getting nasty very rapidly. Chris guessed from his experience that if he lost his temper, it would be him, and not the bullies who would get into the most trouble.<br />
<br />
Joe, one of the rugby team spotted what was going on. He was a big lad himself, and he understood all too well the way that this can make you a target for bullying, he'd lived with this himself in his first years at school. Joe went up to the table where Chris was sitting, and sat next to him. "Have you got a problem with my friend?" he asked the group. Even though Joe is actually one of the most gentle guys around, his size and strength meant that he had a certain presence about him. Even though he and Chris were considerably outnumbered, they somehow looked much more formidable sat together, making smart remarks no longer seemed quite as much fun, the group of bullies melted away.<br />
<br />
Chris didn't know Joe, but he did know that he was in the Rugby team. The shirt he was wearing was a clue, it said "Rugby Team" on it.<br />
<br />
So later that day Chris told his mum Eileen what had happened. And his mum wanted to thank Joe, but couldn't work out a way to do it, until Chris told her that Joe was in the Rugby Team.<br />
<br />
So Eileen wrote to Tom, the college rugby coach, telling him what had happened and asking him to thank the player who had stood up for Chris. A week later, she got a letter back from Tom. "This will never happen again" was the gist of it.<br />
<br />
Tom had been so struck by Eileen's letter that he had read it out to the full Rugby Team at their next training session. "What is this team going to do, to prevent this kind of bullying and make sure every student feels welcome in our college?" he asked.<br />
<br />
They talked together, and agreed on a course of action - in the first couple of weeks of every new term, when new students are trying to work out the ropes, team members began deliberately greeting, sitting next to and befriending the disabled students. It became their policy. It became what you did if you wanted to be part of the rugby team. <br />
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It worked. Seeing the rugby team behaving in this way sent all kinds of messages that these students were as much part of the college as anybody else.<br />
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It's stuck for the following 3 years. Tom has made sure that every new team member knows that this is expected of them, that acceptance and inclusion is part of their values and their ethos.<br />
<br />
The college does plenty of other things - and has had success in involving disabled students in sports (some of their students have played at a national level), but this particular story of practical welcoming by admired students struck me as something that needs to be shared, which is why I've written it up as a story.<br />
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Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com0tag:blogger.com,1999:blog-8816823058695052402.post-22871260421464385782014-07-29T16:32:00.000+01:002014-07-29T22:49:44.638+01:00Portland Gathering 2014This blog has recently had it's 10,000th visitor. That's not bad for a blog that I woefully neglect and update far too infrequently. I'm using this success to motivate me to write here more regularly.<br />
<br />
I spent last week in Portland, for The Learning Community for Person Centered Practice's <a href="http://portlandgathering.org/" target="_blank">gathering in Portland</a> Oregon. There's a good video that interviews some of the participants here: <br />
<br />
<iframe allowfullscreen="" frameborder="0" height="344" src="//www.youtube.com/embed/EOBnOtUmBtg" width="459"></iframe><br />
<br />
I gave three presentations there. One was on the <a href="http://107daysofaction.wordpress.com/" target="_blank">Justice for LB campaign</a>, one was on writing<a href="http://portlandgathering.org/wp-content/uploads/2014/07/One-Page-Profiles-Portland.ppt" target="_blank"> really good One Page Profiles</a>, and one was on the work of <a href="http://communitycirclesblog.wordpress.com/" target="_blank">building community circles</a> in the UK.<br />
<br />
I chose these topics, because I felt they were the most important things happening in the world of person centred practices in the UK that the delegates at this conference in the US should hear about, for different reasons.<br />
<br />
I felt it was vital for people to hear about Justice for LB, because it's a story that illustrates just how vital it is for services to listen properly to people and their families, and the potentially tragic consequences of failing to do this. <br />
<br />
<a href="http://i1.ytimg.com/vi/RRDquine5kI/0.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://i1.ytimg.com/vi/RRDquine5kI/0.jpg" height="240" width="320" /></a>The family had tried to hold a person centred review for Connor Sparrowhawk (LB) at the Assessment and Treatment Unit. They wanted to share what was important to Connor (interesting activities, London Buses, Eddie Stobart lorries, artwork and much more) and what was important for Connor (the fact that his epilepsy was getting worse and the support he would need with this). The staff at the ATU had no time for this thinking however, because it was "not the Care Programme Approach" and did not take it seriously. Connor died a needless and avoidable death by drowning in the bath at the ATU, having presumably suffered an epileptic seizure while unsupervised in the bath. You can read more about the circumstances of his death<a href="http://www.southernhealth.nhs.uk/EasySiteWeb/GatewayLink.aspx?alId=76277" target="_blank"> in the Verita report published about it.</a><br />
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The people who came to this session were visibly moved by Connor's story. They told me that on occasions where this kind of thing happened in the US, the company involved would generally be put out of business, either by quality inspectors, or by the cost of the damages they would have to pay out.<br />
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The key issue was that the family had the answers all the time. They knew about the support Connor needed, and they knew that person centred approaches like the person centred review were the way to think together about, plan and deliver the support he needed. All that was needed was for the service to listen to Connor and his family.<br />
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<em>"Good support starts and ends with listening. Listen to the person. Listen to the people who know the person best. Listen again. Ask questions, keep listening. When you finally think you’ve heard enough, you’re wrong. Listen more".</em><br />
<em></em><br />
I've written previously in this blog about the <a href="http://peoplethinkingaction.blogspot.co.uk/2014/05/is-there-way-forward-for-winterbourne.html" target="_blank">Winterbourne View Concordat, Justice for LB, and how person centred approaches could be part of helping people get out of Assessment and Treatment Units</a> and into the community.<br />
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I talked about One Page Profiles because they are proving to be such a brilliant way of introducing person centred change into individual people's lives, and at scale across services. There was really warm applause for the<a href="http://onepageprofiles.wordpress.com/" target="_blank"> 100 One Page Profiles blog,</a> which was seen as a real asset for person centred practitioners, both as a source of stories, a repository of great examples of the best one page profiles, and as an illustration of the breadth of applications for this person centred thinking tool. Michael Smull told me personally that he considered Helen Sanderson's work on One Page Profiles to be just as brilliant as anything he himself had ever come up with, "and that's speaking as someone with an ego the size of mine".<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1oO2UE-K6K3Lqe9ckX9Yjd2sV8mOfvpBRrVBlgshyphenhyphen25DzuAtbu8_fYmS9qZBlQq7ZhNKN63cxYCJ444hNWjtEaUEpesYeJmGUTksoN8rsltjbITTrP-9bZ4qdROsCTg99NYprZ4CKsX_X/s1600/what+makes+circles+work.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1oO2UE-K6K3Lqe9ckX9Yjd2sV8mOfvpBRrVBlgshyphenhyphen25DzuAtbu8_fYmS9qZBlQq7ZhNKN63cxYCJ444hNWjtEaUEpesYeJmGUTksoN8rsltjbITTrP-9bZ4qdROsCTg99NYprZ4CKsX_X/s1600/what+makes+circles+work.jpg" height="222" width="320" /></a>I spoke about Community Circles because this is an idea with immense potential for the future. We've looked at ways we can apply circles of support at scale, by making them simpler to facilitate and by offering really good support to facilitators. We've also looked at really good applications for circles: in care homes for the elderly, at the end of life with hospices, and their use by faith communities with people who have become isolated because of disability, ill health or circumstances.<br />
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The board of the TLCPCP later agreed that the principles that make circles work, shared in my presentation could potentially also be used as principles with which the Learning Community itself could reframe itself as a growing international community of practice; we could become a global circle sharing our learning together. This is really exciting news, and something I'll be thinking and talking about a lot more in the months to come!<br />
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A really big highlight of the Gathering for me was meeting <a href="http://ici.umn.edu/index.php?staff/view/y48gpq52b">Angela Amado</a>, a leading figure in the field of creating inclusive connected communities, for example I really admire <a href="http://ici.umn.edu/index.php?products/view_part/579/">this manual on connecting people</a> with disabilities with their local communities. It was great to tell her about some of what <a href="https://www.facebook.com/Connect4LifeLancs?ref=hl&ref_type=bookmark" target="_blank">Connect4Life</a> has been doing in central Lancashire.
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<br />
Overall the gathering was a great opportunity to meet a room packed full of real leaders, ideas people and creative change makers: people full of energy and experience, with a determination to change the system, who have certainly boosted me and made me feel optimistic about the prospects for helping many more people gain choice and control in their lives.Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com0tag:blogger.com,1999:blog-8816823058695052402.post-60264909095870675422014-07-08T21:35:00.001+01:002014-07-08T21:51:54.650+01:00What are the conditions in which people share their learning?<span style="color: #1f497d; font-family: Calibri;">In person centred approaches, we rely on lots of different people sharing their learning, including people who previously may never previously have been asked about what they have learned. We ask people, their families and their frontline supporters what they have learned about the person, and what is working and not working in their lives and supports.</span><br />
<span style="color: #1f497d; font-family: Calibri;"></span><br />
<span style="color: #1f497d; font-family: Calibri;">In my experience the times and spaces where people actually share their learning in everyday life are extremely rare. Usually conditions mitigate against this. Where the conditions are not right and people don't feel included on an equal footing, they wont tend to feel inclined to share learning, even if they're asked. Learning tends to get shared better horizontally in circles than vertically in pyramids, between equals, rather than in situations of imbalance of power and knowledges, and such equal situations are themselves all too rare. </span><br />
<span style="color: #1f497d; font-family: Calibri;"></span><br />
<span style="color: #1f497d; font-family: Calibri;">If we think someone is much more knowledgeable than us, we tend to clam up, let them do the talking. In general we would be nervous to share our ideas with someone if they are going to think us naïve or that we have missed the point. Nobody likes to feel stupid.</span><br />
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<span style="color: #1f497d; font-family: Calibri;">If someone is more powerful than us, is hugely influential in our lives, then our strategy tends to be very similar. It does not always seem wise to share something that might contradict somebody with great sway over your destiny.</span><br />
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<span style="color: #1f497d; font-family: Calibri;">What we have learned from our experience is precious to us, when we share it, we feel exposed, at risk. Most of us need to feel confident that what we are sharing is going to be heard, valued and appreciated, or we keep it to ourselves.</span><br />
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<span style="color: #1f497d; font-family: "Calibri","sans-serif";">Because most organisations contain hierarchies and silos, and because of the inequalities in society, person centred practitioners try to work out in our practice ways of temporarily short circuiting these hierarchies, bringing people out of their silos in order to connect them on a more equal footing and to allow learning to be shared between them. We find and wedge open gaps and spaces in the formal structures of organisations attuned to the needs of bureaucracy and market instead of to people, and while in these interstices, we aim to create 'power with' rather than 'power over'.</span></div>
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<span style="color: #1f497d; font-family: "Calibri","sans-serif";">In person centred planning, and in training, we rely almost totally on people we call 'content experts' sharing their learning for these processes to work. In person centred thinking and planning it's the learning of people closest to the person from their direct experience that we truly value. In the training we lead, it's about unleashing some of the tacit knowledge that lurks in people who have years of experience, deep values, different ways of seeing the world, so that everyone in the room learns from themselves and each other. </span></div>
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<span style="color: #1f497d; font-family: "Calibri","sans-serif";">I've found in my most successful trainings 80% or more of what people have learned comes from each other, rather than from me. This is also true in the best planning sessions and coproduction exercises. As facilitators and trainers we feel a real buzz after events and processes that achieve this. After such sessions we feel that we have also learned a great deal ourselves, we yearn to achieve this again! This 'buzzy' feeling is a sign that learning has been successfully shared, that for a short space of time the conditions for sharing learning were successfully in place.</span></div>
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<span style="color: #1f497d; font-family: "Calibri","sans-serif";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXwEdJr4aRHhvPf8R0Gnu3E7fEPA067YtXsvo5o6yBP5IC0stdXzAXJbWB12TUxUiG_wm3Jn8z9LAOkzSXhw7nl8HSliVp-KIgLATlbNZ-wKtTuHXHvgZmtQZ00yPrh94oUINmRBAT70pI/s1600/80+percent.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXwEdJr4aRHhvPf8R0Gnu3E7fEPA067YtXsvo5o6yBP5IC0stdXzAXJbWB12TUxUiG_wm3Jn8z9LAOkzSXhw7nl8HSliVp-KIgLATlbNZ-wKtTuHXHvgZmtQZ00yPrh94oUINmRBAT70pI/s1600/80+percent.jpg" height="230" width="400" /></a></span></div>
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<span style="color: #1f497d; font-family: "Calibri","sans-serif";">As facilitators and trainers one really key role is therefore to create the conditions where power and other imbalances are addressed so that sharing of learning can happen.</span></div>
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<span style="color: #1f497d; font-family: "Calibri","sans-serif";">In both planning/thinking and in training we achieve this by a variety of methods – which include </span><br />
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<span style="color: #1f497d; font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><span style="color: #1f497d; font-family: "Calibri","sans-serif";">Establishing a clear purpose for the session, so that everyone participating understands where to focus their thinking</span><br />
<span style="color: #1f497d; font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><span style="color: #1f497d; font-family: "Calibri","sans-serif";">Involving the right people: in PCP the people most directly involved in the person's life</span><br />
<span style="color: #1f497d; font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><span style="color: #1f497d; font-family: "Calibri","sans-serif";">A hospitable space that makes people feel valued, comfortable, safe.</span><br />
<span style="color: #1f497d; font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><span style="color: #1f497d; font-family: "Calibri","sans-serif";">Rituals and routines of demarcation at beginning and end that separate learning space and time from work or leisure time.</span><br />
<span style="color: #1f497d; font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><span style="color: #1f497d; font-family: "Calibri","sans-serif";">Ground rules (as few as possible, and each one designed specifically to help people be included and involved)</span><br />
<span style="color: #1f497d; font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><span style="color: #1f497d; font-family: "Calibri","sans-serif";">Equal space and time for each participant, so that everyone gets a chance to contribute. (Delivered through techniques like 'rounds')</span><br />
<span style="color: #1f497d; font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><span style="color: #1f497d; font-family: "Calibri","sans-serif";">Mutual respect</span><br />
<span style="color: #1f497d; font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><span style="color: #1f497d; font-family: "Calibri","sans-serif";">Using the communication methods most appropriate for the person/participants</span><br />
<span style="color: #1f497d; font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><span style="color: #1f497d; font-family: "Calibri","sans-serif";">Listening Mindfully</span><br />
<span style="color: #1f497d; font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><span style="color: #1f497d; font-family: "Calibri","sans-serif";">Incisive questions</span><br />
<span style="color: #1f497d; font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><span style="color: #1f497d; font-family: "Calibri","sans-serif";">Appreciation</span><br />
<span style="color: #1f497d; font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><span style="color: #1f497d; font-family: "Calibri","sans-serif";">Valuing each contribution</span><br />
<span style="color: #1f497d; font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><span style="color: #1f497d; font-family: "Calibri","sans-serif";">Being prepared to act on learning and turn it into concrete change</span><br />
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<span style="color: #1f497d; font-family: "Calibri","sans-serif";">It's worthwhile spending plenty of thought on what the conditions are that enable people to share their learning. If we're to achieve genuine engagement from citizens in the production of their own lives and services, if we're going to listen to people well, if we want to create organisations that learn and change, then a grasp of how we create the conditions for people to share learning is fundamental.</span>Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com0tag:blogger.com,1999:blog-8816823058695052402.post-80014642114154797572014-07-08T20:57:00.001+01:002014-07-08T20:59:14.397+01:00Inclusion is the ship that isn't even built yet...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgft2apWNTqttAuJ9iR-MAbZxf2F3dSI7_CILz1x20IsNYOREqsHcQPUt7f2u7ijBvDBFOFWcig0J8_uptrLawAsJKyVqs9_kzkixqYEXpLPFQ_EhuE27tUpsgNsYdyadSoAv_hUWqveHgo/s1600/Inclusion+Marsha+Forest.jpg" imageanchor="1"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgft2apWNTqttAuJ9iR-MAbZxf2F3dSI7_CILz1x20IsNYOREqsHcQPUt7f2u7ijBvDBFOFWcig0J8_uptrLawAsJKyVqs9_kzkixqYEXpLPFQ_EhuE27tUpsgNsYdyadSoAv_hUWqveHgo/s400/Inclusion+Marsha+Forest.jpg" /></a>
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<a href="http://www.allfie.org.uk/pages/useful%20info/inclusion.html?style=TextOnly">http://www.allfie.org.uk/pages/useful%20info/inclusion.html?style=TextOnly</a> Anonymoushttp://www.blogger.com/profile/11070540869313492327noreply@blogger.com0