Nephrostomy: 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.

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.

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.

So now the alternatives that are left for me are either a nephrostomy, or to do nothing.

A nephrostomy 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)".

The MDT that met and talked about this (in my absence!) decided it was definitely the best thing for me.

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.

Think About Your Life has a whole set of tools 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 'Living Well' document designed by HSA and Lancashire County Council.

I decided to use the person centred thinking 'working/not working' tool from 'Think about Your Life' to think about what works and doesn't work for me about having a nephrostomy.

Here are my own reflections:

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.

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!

Atul Gawande on End Of Life

 

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 great book "Being Mortal".

 

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.

These questions are:

1. What is your understanding of where you are and of your illness?

 2. Your fears or worries for the future

 3. Your goals and priorities

 4. What outcomes are unacceptable to you? What are you willing to sacrifice and not?

 And later,

 5. What would a good day look like?

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.

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.

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.

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'.

I've already done a little of this thinking for myself, and shared tools like my one page profile and my history map on this blog. My most recent scan suggests I need to think more urgently about Atul Gawande's questions and my recent time staying at St Catherine's hospice gave me a chance to think about this.

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 'Living Well' 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!

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.

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 Community Circles.

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.

These are the things I'll be putting into my end of life plan. As Atul Gawande said “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.”

 

My Bowel Cancer One Page Profile:

This was originally posted on the Connect4Life blog: http://connect4life.blogspot.co.uk/2015/05/one-page-profiles-for-long-term.html: thought I would share it here too!

One page profiles are a simple way that people with long term health conditions can tell our story and express our preferences.
They have a starkly simple format: They have just 3 questions:

• What people like and admire about me.
• What is important to me
• How to support me well.

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.

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!"

"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."

"I'm hoping that it will be a way to avoid having to answer the same questions over and over again!
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."

"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, why shouldn't every cancer patient be helped to write a One Page Profile?"



You can find out more about One Page Profiles by following the links below:

This is a blog with one hundred examples of One Page Profiles being used in many different ways:
https://onepageprofiles.wordpress.com/

Here's a blog advocating the use of One Page Profiles with Older People living with cancer: http://opaalcopa.org.uk/tag/one-page-profiles/

Here's Amanda's One Page Profile written around her breast cancer: http://thinkaboutyourlifeandhealth.com/2013/06/28/using-one-page-profiles-to-direct-cancer-support-amandas-story/

The Learning Community for Person Centred Practices have shared many examples of One Page Profiles: http://www.learningcommunity.us/onepageprofiles.htm

Here's a blog showing how One Page Profiles can be used in personalising health services:
http://personalisinghealth.com/tag/one-page-profiles/

Think About Your Life offers a whole range of thinking resources to people living with cancer, including a template for a One Page Profile: http://www.thinkaboutyourlife.org/

You can also get in touch with Connect4Life!

Follow us on twitter: @C4LifeLancs

'Like' us on facebook: https://www.facebook.com/Connect4LifeLancs

Tips for Getting Through Chemotherapy

Chemo-rocker

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.

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.

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.

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 "Think About Your Life" which helps you do exactly that.

One useful tool that will really help on that site is the 'One Page Profile', 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.

This bolus syringe and vacuum makes me look like one of the Ood!

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.

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.

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.

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!).

This is a pretty good book on mindfulness that avoids all the esoteric religious stuff, and that has some good exercises and a CD: 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

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 Community Circle.

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.

6. Drink plenty of fluids. Flush those drugs out of your liver as quickly as you can!

7. Look after your mouth. Brush your teeth and use mouthwash.

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.

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.

10. Keep an eye on your temperature. The big risk in chemo is 'Neutropenic Sepsis', 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.

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!

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.

Please feel free to add your own hints and tips below! Let me know what worked best for you.

Portland Gathering 2014

This 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.

I spent last week in Portland, for The Learning Community for Person Centered Practice's gathering in Portland Oregon. There's a good video that interviews some of the participants here:



I gave three presentations there. One was on the Justice for LB campaign, one was on writing really good One Page Profiles, and one was on the work of building community circles in the UK.

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.

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.

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 in the Verita report published about it.

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.

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.

"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".

I've written previously in this blog about the Winterbourne View Concordat, Justice for LB, and how person centred approaches could be part of helping people get out of Assessment and Treatment Units and into the community.

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 100 One Page Profiles blog, 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".

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.

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!

A really big highlight of the Gathering for me was meeting Angela Amado, a leading figure in the field of creating inclusive connected communities, for example I really admire this manual on connecting people with disabilities with their local communities. It was great to tell her about some of what Connect4Life has been doing in central Lancashire.

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.

What are the conditions in which people share their learning?

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.

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.

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.

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.

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.

 

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'.

 

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.

 

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.

 

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.

 

In both planning/thinking and in training we achieve this by a variety of methods – which include
 

 

·         Establishing a clear purpose for the session, so that everyone participating understands where to focus  their thinking
·         Involving the  right people: in PCP the people most directly involved in the person's life
·         A hospitable space that makes people feel valued, comfortable, safe.
·         Rituals and routines of demarcation at beginning and end that separate learning space and time from work or leisure time.
·         Ground rules (as few as possible, and each one designed specifically to  help people be included and involved)
·         Equal space and time for each participant, so that everyone gets a chance to contribute. (Delivered through techniques like 'rounds')
·         Mutual respect
·         Using the communication methods most appropriate for the person/participants
·         Listening Mindfully
·         Incisive questions
·         Appreciation
·         Valuing each contribution
·         Being prepared to  act on learning and turn it into concrete change

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.

Buber: All real living is meeting

I love this quote from Buber, that "All real living is meeting". I don't think he's talking about the typical meetings we all too often hold in our workplaces, rather those precious, positive and productive times when humans genuinely meet, when ideas and feelings are voiced, horizons touch and people change and grow.


I also love this quote from Buber

"I knew nothing of books when I came forth from the womb of my mother, and I shall die without books, with another human hand in my own. I do, indeed, close my door at times and surrender myself to a book, but only because I can open the door again and see a human being looking at me."

I'm not even going to attempt to explain all the complexities of Buber's ideas here. Just to salute his core idea: the distinction between "I - it" understandings, and "I - thou". This encapsulates the difference between seeing the person or the world in terms of it's properties and functions, as organisms rather than as individuals, and his argument that  we become  more fully human through our accepting "I - Thou" interactions with other human beings and the world when we put ourselves fully into the relationship, being fully open to dialogue, unconditional and authentic, embracing the risk that this could result in real change in ourselves.

His ideas were revolutionary because they refocus us on the importance of our relationships with each other and our world: How we connect, how we take notice, how we learn, how we give, how we move toward our potential as human beings.

Much of the best thinking about good listening, good meetings, coproduction, community and wellbeing that's around today owes a great debt to the concepts expounded by Martin Buber. His fingerprints are in the silences wherever people intentionally think together. His thinking was utterly person-centred:

"Every person born into the world represents something new, something that never existed before, something original and unique....If there had been someone like her in the world, there would have been no need for her to be born"

There's a very nice slideshow introduction to Buber and his ideas here: http://courses.washington.edu/spcmu/buber/index.htm

In an interesting piece of synchronicity, this video narrated by Gill Bailey was posted today. It's an explanation of how the 'Relationship Circle' person-centred thinking tool is used to improve people's lives and supports.

The relationship circle honours the important relationships in people's lives, and ensures they are recorded and respected. Understanding how a person is part of a network of important human relationships is so very different from regarding them in terms of  a set of deficiencies or a set of care tasks.

"What's important to people always includes relationships" says Gill: I think Buber would warmly approve.

The plight of the systematiser

Can humanity assert itself in the face of the systematising power of markets and bureaucracy?

Can our human services organisations genuinely personalise the supports they offer in a way that makes sense to the people they serve?

Will person centredness always be struggling in the spaces it makes in small cracks and corners of the system, always in peril of being abolished by the swipe of some bureaucratic pen?

The inimitable John O'Brien recently released a new paper: "The trouble with person centred planning". In it he explores the tension between "lifeworld rationality" and 'system rationality'.

Lifeworld rationality being those ways of thinking that lead to lives that make sense for individual people, whose subject matter is building and enjoying relationships, dialogue between subjective individuals aimed at mutual understanding and change, the everyday components that go to building good days and good lives and characterised by appreciation of individual gifts and contribution and a celebration of the person's unique identity.

'System rationality' being the ways of thinking encouraged by the driving forces of market and bureaucracy that coordinate, standardise, regulate the ways we work, aiming for efficiency, and characterised by indifference to individuals and uniformity in approach.

It's a tension that everyone who has tried to implement person centred change, in the life of an individual, the work of a whole service or the culture of a whole sector has experienced. Part of person centred work is to 'part the veil of indifference' that John describes, showing how a system's standard practises, policies, structures and assumptions are underestimating and limiting the people they support.

Sometimes I feel John sounds quite pessimistic in his article, he describes the society we live in as the most completely systematised in the history of humankind, with tendrils of the market and bureaucracy insinuating themselves into everyday life, commodifying and regulating every aspect of our existence. He says that the plight of those advocating and practicing person centred approaches is that they can never fully overcome "the colonising forces of system rationality" though he does celebrate the space that person centred approaches have managed to carve despite these forces and seeks ways to defend and extend these spaces where people can be present to each other and search together for the conditions that create a good life.

In response to this hint of pessimism I'd suggest that it is not just the personalisers and humanisers, the 'lifeworld rationalists' who face a 'plight':

The systematisers face an equal and opposite plight.

At the heart of the plight of the systematiser, is that their systems are made of human beings. Systems designed on paper are held together by our habits, reinforced by our assumptions. Human beings have powerful minds and hearts, they are able, (sometimes with the help of a few good questions) to think outside of the systems that contain them, to sense the changes that need to happen.

There's something about humanity in that it resists regulation, commodification and standardisation, especially when it is provided with the tools to do something different, allowing what Michael Smull calls 'positive discontent' to manifest itself as change.

The most ironic plight of the systematiser is that their systems usually don't work UNLESS human beings find other ways of acting and connecting with each other beyond those prescribed in the policy and procedure manuals.

It's clear that oftentimes this resistance to systematisation manifests itself very negatively, especially when it takes the form of  'cynical discontent'. The most regulated and systematised environments are the ones where the darkest abuse tends to occur. Locked doors, walls, protocols and procedures do not keep people safe. The human relationships that all those things are preventing are what keep people safe.

When people are given positive tools and approaches that help part that veil of indifference, even for a moment, it's surprising how easily and joyfully humanity can break through. I loved this little vignette from a hospital ward posted just yesterday on facebook by Jo Harvey:

"Last week I spent two days working at London Road Community Hospital in Derby on our personalisation programme. We are working to introduce one page profiles for patients and staff, more inclusive MDT meetings and working together for change. One of the simple but effective things we are introducing to improve the patient experience is to ask each patient each day what would make a good day for them. This week when we were reviewing how the start of the programme has gone, one ward sister shared a story of how a patient had said that it it would make a good day for him if he could see the staff dance. So they did! Lots of smiles on that day. Simple but effective!"

This story reminded me of Emma Goldman's quote "If I can't dance to it, it's not my revolution".

Person centred thinking tools aim to find big and small ways to part the veil of system indifference - using a one page profile to seek to learn and list everything that people appreciate about a person, everything that really matters to that person is an attempt to do this.

Being willing to share your own one page profile with others creates opportunities to create relationships that are based on more than transactions, offering insights into what may be shared common interests and other ways of connecting.

Matching up people with staff with the right personality characteristics and shared common interests creates new ways of working and being. Linking people into their communities and finding ways with them that they can contribute to the community creates new opportunities for relationship. Creating organisational cultures that value intentional listening, listening to understand, and demonstrably value it when people act on that listening creates whole new possibilities for change.

 

I love this photograph of a temple from Thailand; just as humanity, given the opportunity bursts through systematisation, this tree has somehow both destroyed and preserved the temple it has grown around. It's taken a dry, abstract and formal structure and turned it into a living, breathing entity, rooted in nature. I wonder whether we can change organisations and systems in the same way, by allowing humanity, and the power of human relationships to really take root, in those little cracks in the system we open up every time we use person centred approaches to appreciate and listen well to people?

Michael Smull on One Page Profiles

Michael Smull speaking in Texas

Michael Smull sent out the following message to people on the Learning Community for Person Centred Practices general mailing list today, he's given permission for us to share it.

"In our efforts to support people in have lives of their own choosing within their communities we have developed an array of practices, skills, and tools. Notable among them are 1 page profiles.  They are both powerful and remarkably useful.  They have made significant differences in the lives of people and have been a critical part of making positive changes in practices.  One page profiles are not meant to be a complete picture of a person, rather they are a snapshot that introduces the reader to the person, outlines what matters most to that person and gives the top tips for support.  Part of their power is in their brevity and that, done well, they are visually attractive.  They are a powerful “tool” in changing how people are perceived and supported.  But they are not powerful simply because they exist but because of their impact.  People who use services, their families, and those who support them have given us story after story about how they have helped in their efforts.  For some people part of what was powerful was the learning that that takes place in development.  For many others it is how effective they are in introducing someone and advocating for them. 

 

A test for something being person centered is that it works for humans.  If it just works for disability it is clinical.  When we apply this test for 1 page profiles we see that can be helpful in a variety of human circumstances.  My 1 page profile as a trainer (on the learning community’s website) is very helpful for those asking me to do training.  With teams, I have facilitated a process for them to develop 1 page profiles on each other and team members find that they are then more effective in working together.

 

There are so many stories about the efficacy of 1 page profiles from so many places that I find it difficult that anyone paying attention can criticize them as ineffective. This is not to say that they cannot be poorly done or badly used.  They are a means not an end. They are not a “magic bullet”, they are not the only thing that needs to be done to change practices, but they are key part of what I teach and coach.   Criticism of those done badly or done just to be “trendy” is justified and useful.  Broad criticism flies in the face of the reality of their impact.  But that criticism has occurred. The criticism I have seen suggests that we are promoting  one page profiles as an end.  Yet if you read the stories associated with the profiles you see that it is how it was used not just that it exists.

 

Because 1 page profiles are being criticized we need more stories.  If you could take a few moments and share your learning it would be very helpful.  Clearly we want stories that illustrate the breadth and power of their use.  But, because we are learning community, we also want stories that illustrate your learning in what was required to make them useful.

 

Thank you.

 

Michael"

One Page Profiles: Just Garnish?

One page profiles are a simple person centred thinking tool that sum up what people like and admire about a person, what's important to that person, and the best ways to support that person on a single sheet of paper. Their simplicity and practicality means that they are becoming very popular, they are an easy first step in the person-centred journey. The growing uptake of these tools however  has inevitably meant that they have also invited criticism, criticism which gives us an opportunity to think more deeply about the best ways to use one page profiles, their benefits and their limits.

Last week Simon Duffy tweeted what looks like a quote from Peter Kinsella at a big everyday living conference "One Page Profiles are just garnish, they make no difference".

This is a 'black swan' statement. Find one black swan and you prove that the statement 'there is no such thing as a black swan' is pretty unfounded.

As a black swan statement, all that's required to prove that particular tweet wrong is one example of a One Page Profile that has made a difference for somebody. And of course there are many more than just one example, all kinds of examples and stories of one page profiles that made a difference are posted on the '100 One Page Profiles' blog. Stories are statistics with souls, and the list of stories on that blog is only growing longer and richer.

Sweeping statements that dismiss One Page Profiles and other pieces of person centred thinking as 'just garnish' are therefore pretty unhelpful and easily disproved, though to be fair to Simon and Peter, maybe the statement would have been phrased better if it was not constrained by the 140 character limit set by twitter.

 A more helpful statement would have been 'some one page profiles are just garnish and make no difference'. We could then investigate what makes the difference between one page profiles that achieve change in people's lives, and those that don't, so that we can work to create the conditions where more of the first kind are produced. This is the purpose of the Learning Community for Person Centred Practices, which develops person centred thinking tools, shares them and then gathers learning about the best ways to use them to ensure that people win more choice and control in their lives. You can also find TLCPCP on facebook and twitter.

There are however some more thoughtful criticisms of One Page Profiles out there that we need to consider seriously because they will help us work better at increasing choice and control in people's lives. Below I'm listing some of these criticisms, and giving what I hope are some  equally thoughtful and constructive responses, the beginning of a respectful learning conversation:

1.    "One Page Profiles are only for disabled people, so having one labels you as disabled"

We would argue that one page profiles have many many uses, with applications for many diverse people, including non-disabled people and situations that are nothing to do with health or social care.

 

On the 100 One Page Profiles website, there are examples of one page profiles used in mainstream schools, in a couple's birthing plan, to find a nursery, to help people know how to speak to a recently bereaved woman, as a way of applying for a job, as a method that an employer can support their staff. People are inventing new ways to use one page profiles in almost every aspect of their lives.

 

We also use one page profiles in our own work as trainers and planners, we share our own profiles with the people we serve, and their families before we ask them to share anything with us. We see one page profiles as being useful in many different people's lives and work, and not as something exclusively for disabled people.

 

Because they increase the amount of choice and control in people's lives however, we're do find one page profiles particularly useful in the lives of people who have less choice and control in their lives as a consequence of society's attitude to the presence of ill health or disability.

2.    We shouldn't use any predetermined tools or scripts. If we properly listen to people we can improvise and adapt our approaches in a way that suits that person.

 

There are a few, absolutely brilliant and charismatic facilitators out there who have the ability to facilitate person centred thinking and practice 'on the hoof'.

The rest of us however don't share this level of confidence in our abilities, many of us may be new, inexperienced and nervous, and therefore find tools that prompt and structure our discussions in a direction that inquires into a person's gifts and skills and that seeks out what really matters to them very useful.

 Having such simple tools means many more people can practice and experience person centred thinking. They democratise the practice rather than leaving it in the hands of a small and gifted elite, and mean that many more people get to benefit from more person-centred support in their lives.

 We also hope One Page Profiles will replace those much more complex and negative tools that services traditionally (and many still currently) use. Assessments and approaches that focus on what a person can't do, that inquire into people's incapacities rather than their capacities, that consider health and safety without also considering what really matters to a person and which implicitly regard the person as a problem to be solved are doing great damage to people, saddle them with negative reputations, and lead us to support them in paternalistic and overprotective ways.

 

Replacing such segregating deficit model tools with simple tools that focus on gifts and capacities and on connecting a person into the community is part of shifting the whole culture of health and social care toward a different way of regarding people.

 Of course we must endeavour when we use one page profiles, to do so in a way that respects the person's preferred methods of communication to be sensitive to what really matters to that person. We need to keep learning about what helps this work best.

 

3.    Sometimes One Page Profiles are just superficial lists of likes and dislikes.

 

Like any tool, there are useful ways of using them and ways that are less useful. I don't prove that my screwdriver is useless just because my shelves fall down, I prove that I need some help and advice to use my tools better.

 Using a one page profile well, to structure a meaningful conversation and to delvier change, requires a real intention to discover what's strong and valuable about the person, and a determination to find ways to support that person that make sense for the person, as well as a genuine will to act on whatever is learned.

 

To be able to write one page profiles with others, we therefore require that people have first written and used one page profiles themselves in their own lives, to gain an appreciation of their potential to make a difference when used well, and to ensure that we don't ask people questions that we have not been prepared to answer ourselves.

 

4.    Introducing One Page Profiles En Masse would lead to tickbox planning.

This is a real risk if one page profiles are implemented by people or systems that don’t care about one page profiles or the people they are supposed to be supporting, and don’t endeavour to train people well in how to use them. Such people implement changes to 'meet targets' without thinking more deeply about the purpose of such changes.

 

In such a scenario, we’d be likely to see plans that are just superficial lists of likes and dislikes. This would be far less harmful than continuing the implementation of tools that focus on deficits, but would not lead to the change we wish to see. Just like any other approach, one page profiles rely on genuine intent to listen well and to act on what is learned, and if change is to happen this intent must be reflected at every level.

 

Where people really are stuck in structures and systems so deeply imbued with this target-driven cynicism, then measures like personal budgets that enable people to seek support from outside such systems are going to be helpful. Good person centred thinking helps with good support planning and helps people use their personal budgets most effectively.

 

We'd also advocate other methods of cultural change within these structures, that shift the conversation away from targets toward the meaning and purpose of the work, and toward practical ways of bringing about system change.

 

5.    There are some things we don't wish to share about ourselves

Don’t share those things then!

 

It’s up to the person what they choose to share in their one page profile. It helps to think about what the purpose of the one page profile is, and therefore who needs to see it, as well as what they need to know and do to support you well. These questions help focus us on what needs to be included in a one page profile, and which people it would be shown to.

 

6.    One Page Profiles are not a panacea

One page profiles will not solve all the problems inherent in health and social care or in our disablist society. If you’re looking for something that does, keep working hard! We’re right with you! In the meantime people still need better lives that mean something to them, and better supports delivered in a way that makes sense to them. In an imperfect and confusing system and a society rife with unjust power and resource distribution, every tiny bit of choice and control we can win back in our lives is precious.

 

7.    One Page Profiles could become a substitute for doing more detailed person centred planning.

 

There’s definitely a risk that someone could write a one page profile and say “And now my work here is done”. However as we explain in this paper, the one page profile is just a first step in the person centred journey. There are many other tools that do equally useful jobs: communication charts, staff matching tools, tools that help us explain to staff their different roles and responsibilities, learning tools, community connecting tools, tools that help us move toward our dreams and avoid our nightmares. These tools are there to try out and experiment with. Find ways to use them that make sense to you. Share what you're learning while you do!

 

Please don’t stop thinking together just because you’ve completed a one page profile! There is so much more to discover, and it could be great fun discovering it!

 

More info on One Page Profiles here: http://www.helensandersonassociates.co.uk/reading-room/how/person-centred-thinking/one-page-profiles.aspx 

 

Person Centered Approaches to Conflict with Max Neill

The Right To Think Differently Includes The Right To Think Differently

The learning community for person centred practices just tweeted "The right to think differently includes the right to think differently" on their twitterstream.

What they mean that as well as having a right to think differently about different things we also have a right to think in different ways. We can have very different opinions about all kinds of things, yet still get on together as a community, and we also need to learn to be just as open to people whose very thought processes seem different from our own.

I was listening to a programme on the Radio, about Japan and the way that the use of the abacus helps children understand number in an entirely different way from the fairly abstract concept of number we have in the west. By using the physical abacus, children start using the parts of their brains dedicated to sight and touch to understand number as well as the small part that westerners use.

In the West we've long had an idea that mind and body are separate - psychologists are discovering however that much of our thinking is done with our bodies long before we even become aware of it. 95% of the time the idea of a step-by-step logical and rational thinking process is just not the case.

The self-proclaimed champion of rationalism is Richard Dawkins. I used to follow him on twitter, and the key thing I noticed about his posts was not some cold Vulcan rationality, but an intensely passionate man, whose writing dripped with anger and other emotions. There's nothing wrong with thinking emotionally. It's how human beings think most of the time. It's our emotions that drive us forward, it's the way most of us are built! Instead of denying this and seeing it as a problem, we'd do better to understand it, and understand why it works for us most of the time (and why sometimes it doesn't!)

But when it comes to people who think in even slightly different, non-standard ways, we immediately see this as a problem, and even a threat. We label these people, we create fearful myths around these people, we try to 'cure' these people. We try to impose a false standard of rational and logical thought onto these people that we do not even approach ourselves. Rather than accepting these people as a part of the rich diversity of our species, we focus all our darkest fears on them, make them something 'other'. We have to learn to resist this innate desire to 'normalise' ourselves by 'othering' difference.

Zombie film 'World War Z' included the rather powerful idea that if there are 10 people in a meeting who all think exactly the same about something, then 1 person should be tasked to think something different about it, because otherwise no real thinking can be happening. This is suggested because real thinking only happens where there is difference, diversity, discussion and dialogue. If everyone is in agreement, then it's likely that most of us are not thinking. The conflicts that difference creates are the 'gadfly of thought' - they drive us on to thinking and contriving.

One example of this from medicine is the Jehovah's Witnesses refusal to accept blood transfusions. People got really angry about this. How stupid! How irrational! But the refusal of Jehovah's Witnesses to accept blood transfusions forced medical science to invest in the investigation of alternatives. This has resulted in techniques and products that don't rely on human blood, and these have saved many many lives, including those of many people who are not Jehovah's Witnesses. We may not understand their intransigence, but ultimately it is the Jehovah's Witnesses' gift to everyone who gets better and safer treatment as a result.

We need to understand that people who think different things, and people who think in different ways are very valuable. They have something to teach us, they open up new ways of seeing, being in and understanding the world. Business manuals are full of techniques aimed at encouraging businessmen to think in different ways, because this is at the heart of businesses survival. Strange then that the culture of business so strongly encourages conformity behind the bland uniformity of the business suit. Forcing a single way of thinking on society is as unhealthy as trying to impose a single racial characteristic or a single sexuality on society. Diversity is the greatest source of adaptability and strength for the whole human community.

Person Centred Thinking also challenges us to think differently. It asks us to stop just seeing things from our own perspective, from a 'professional' perspective, from the perspective of what suits the service, and instead to attempt to see things as the person sees them. It challenges us to drop habits of thinking about people's deficits, of thinking of ourselves as 'fixers' and to instead attempt to see people's gifts and assets, and to see ourselves as connectors, renewing people's place and relationships in the community, and thus strengthening all of us.