Wednesday, 3 December 2014

Ostomy Advice and Resources Blogs

Since getting my ostomy, I've been interested in the resources available online for ostomates (people with ostomies).

My operation scar and ostomy bag
My ostomy kit
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.

 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.

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.

One that impressed me today was by Jessica Weatherby called "Guts and Glory". I particularly liked this post on Bags Tips and Tricks where she shares expertise that only someone who lives with a bag everyday could gather. Jessica's story featured in the Daily Mail.

The Adventures of the Stoma Bag Lady is another good blog. I love this post "I Cant Fart" which lists 5 things people might not know about ostomies.

Colitis and ME is another great blog - this is by Victoria Marie, a key figure behind the 'Get Your Belly Out' 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 facebook page is here, 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 'My Bags For Life', another ostomate fb community full of positivity and helping. I've had good support and advice from both pages. The Colostomy Association have a private facebook group which currently has 2739 members!

The Great Bowel Movement is a blog that aims to keep people talking about poop:

"We see our community fighting hard for this, doing their part in social media, through blogging, and through starting conversations, 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.
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"

This story about Mark's Day on the Beach is worth a read:

"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"

Pretty Gutless posted this great guide on how she changes her ostomy bag. It's on tumblr, which made it easy to illustrate with loads of photos, stage by stage, which makes it really easy to follow.

I don't think any list of Ostomy blogs would be complete (not that this list is complete by any means!) without Stolen Colon, this collects together lots of different people's stories. There's some great advice here on what to do when your bag gets filled with gas.

A great Youtube Channel by an Ostomate is Laura's blog Ostomystory. Here's an excellent account of how she changes her stoma bag, it's had over 150,000 views!

There are plenty of myths and fears around ostomies and Blood Poop and Tears does her best to clear up 13 of them. Here's myth number 10:

"Myth #10 – I don’t know anyone with an ostomy
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."

One of the really best blogs is Vegan Ostomy. 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 clothing guide for men.

I've given a bit of advice of my own. Here I talk about challenging stigma around stomas and cancer, and here I give some of my own tips for getting through chemotherapy.

If you want to do more than connect online, there are support groups out there. Eakin Cohesive has made a list of many groups around Europe and the Anglophone countries. They've also put up a pretty good list of some of the various online resources for ostomates.

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!

I'm also hoping at some point to put up a list of great twitter accounts that cover ostomies (for example @uncoverostomy who also blogs here  and @colitisninja , 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!

Thursday, 20 November 2014

Tips for Getting Through Chemotherapy

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:

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.

Thursday, 13 November 2014

Luck and Cancer

You 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.
One by one, the people you meet tell you "You were lucky!".

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.

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.

And here it starts to sink in how lucky I am.

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.

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.

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.

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. Cards, 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.

 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!

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.

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.

So should we call it luck? Abundance? Human Solidarity? Love? Something is working for me, and I'm so thankful for it.

"When you realise how perfect everything is, you will tilt your head back and laugh at the sky..."

Thursday, 16 October 2014

Poem To My Stoma

I 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).

To My Stoma:

Today I learned
That if I wish to survive
I have to expose
A little of my inside to the outside.

This is required
Even when all that comes out
Is shit.

Wednesday, 15 October 2014

Stoma Stigma and Cancer

I've had an eventful month.

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.

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!

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.

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.

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!).

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.

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.

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.

Answering the phone at my own pace when I feel fully ready is my new strategy.

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.

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.

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.

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.

I heard Lynda Bellingham discussing her own bowel cancer on Radio 4, 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".

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.

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 small but lively underground movement of 'ostomates' (like the 'Ileo Atlas') who share tips and problems, and who even photograph and share their stoma pouches (I've taken one of Maggie Baldwin from the 'Stomawise' website) and one of Jason McIntosh from Awstomy. On twitter there's a whole hashtagful, under #getyourbellyout.

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.

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!

The history of the stoma is really fascinating. One really key fact is that the surgeons imagination tended to stop at the surgery. It was the people with stomas themselves who advanced the technologies of the pouch to what they are today, making them into something that people can live with practically in everyday life.

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.

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!


Wednesday, 3 September 2014

Chris and Joe challenge bullying

Here'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.

It started about 4 years ago in a Further Education college in North West England.

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 somebody at this college.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Tuesday, 29 July 2014

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.

Tuesday, 8 July 2014

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.

Inclusion is the ship that isn't even built yet...

Friday, 23 May 2014

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:

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.

Tuesday, 20 May 2014

Is there a way forward for the Winterbourne Concordat?

 The 1st June 2014 is an important date. It was the date that was set for significant improvements in the lives of people housed in Assessment and Treatment Units by the Winterbourne Concordat. For most this was meant to have been resettlement back into places in their own communities, for the rest, clear plans for resettlement were meant to have been written. The statistics coming out however show that in fact the reverse has happened. People are still staying in ATUs for long periods, the numbers in ATUs are increasing. Most people do not have resettlement plans.

What follows is not in my usual blogging style. It was written as an essay for the Management Unit of my Masters degree, so it's in an academic style packed with references. It's also full of management theories which I had to include to demonstrate knowledge. I'm quite sceptical about a lot of management theories - sometimes they are blindingly obvious, sometimes they are gnomic, occasionally they provide brilliant insights. As I point out in the essay, knowing these theories has not helped the people who signed the concordat to actually deliver its promises, something extra is needed.

I thought about taking a lot of the academic stuff out before I blogged it, but I couldn't find a way of doing this without fundamentally changing the meaning of what I've written, so I have to apologise in advance for the inaccessible style.

The case of Connor Sparrowhawk is mentioned in the essay, because I felt it was directly relevant to the Winterbourne Concordat. I shared the essay a few days ago with Connor's Mum, and she is OK with me sharing it.

Is there a way forward for the Winterbourne Concordat?

One of the most problematic recent issues for government and local authorities has been around their response to the Winterbourne View Scandal. In May 2011, the BBC’s Panorama programme broadcast shocking undercover footage of serious abuse at an Assessment and Treatment Unit (ATU) (BBC 2011), this was followed over a year later by another programme showing that the same serious failings still existed (BBC 2012).

The furore around Winterbourne (and also Mid-Staffordshire) also led to the resignation of several CQC leaders following criticisms of their ‘light touch’ approach to regulation, and alleged unwillingness to be critical of the NHS (Ramesh and Muir 2013).

In response to the outrage around Winterbourne, Care and Support Minister Norman Lamb vowed that by June 2014, people would be placed in small local community based facilities, rather than being sent hundreds of miles to inappropriate placements (Samuel 2013). This policy was a key feature of the Winterbourne View Concordat (DOH 2012), the headline commitment being “Health and care commissioners will review all current hospital placements and support everyone inappropriately placed in hospital to move to community-based support as quickly as possible and no later than 1 June 2014”.

This concordat was signed by directors of Adult Social Care and NHS Clinical Commissioners along with many other leading bodies: over 50 in total.

Impacts on people with learning disabilities and their families:

The key impacts on people with learning disabilities and their families of the successful implementation of the concordat would have been that people with learning disabilities and challenging behaviour would find locally available services to meet their needs, staffed by well trained people. Those still on ATUs would all have discharge plans, and the changes would “lead to a rapid reduction in hospital placements for this group of people by 1 June 2014” (DOH 2012 p5). Long stays in hospital would not be tolerated as “a hospital is not a home” (ibid p5), and there would be “zero tolerance for abuse and neglect” (p5).

This contrasts markedly with the current situation revealed by the Learning disability census which shows that two thirds of the 3250 people on Assessment and Treatment Units are being given large doses of anti-psychotic drugs, and over half being subject to restraint, seclusion, physical abuse or self harm (HSCIC 2104). 74% do not have a plan to return home (FPLD 2014), and the number housed in ATUs have actually INCREASED since the signing of the Concordat.

The report also revealed the extremely high cost of living in such miserable conditions; between £1500 and £4500 a week, with 10% costing even more than this (Parton 2014). Chris Hatton of CEDR estimates that the total cost per annum of housing 3250 people at these rates is over 1/3 of a £billion, and an incalculable cost to the wellbeing of the individuals concerned and their families (Hatton 2014a).

The stark reality of what this means to people and their families was revealed by the report into the preventable death of Connor Sparrowhawk, who drowned while unsupervised in a bath in an ATU. (Hussein and Hyde-Bales 2014) This report found that staff at the unit did not understand person centred planning, and that despite the high cost and high number of staff, the risk around his epilepsy was not properly assessed and the procedures in place were not adequate (ibid). Connor’s family report that they were made to feel unwelcome on the unit, as if they were interfering, and that their concerns about his level of activity and his epilepsy were not properly listened to. (BBC Radio 4 2014)

Impacts for Managers Commissioners and Providers:

Other key changes committed to in the concordat include:
• A strategy to reform the current arrangements for the assessment of special educational needs
• Joint commissioning between the NHS and Social Services locally
• Transition planning starting in childhood and continuing up to the age of 25
• Improvements in training and support for staff
• Unannounced CQC inspections
• Six monthly healthchecks
• Involving families and people with challenging behaviour in the commissioning of services and gathering feedback on their experience

Changes for organisations implied by the concordat obviously imply the strategic redirecting of that £1/3bn from funding places at ATUs to funding local community based facilities. This requires a very different approach from those commissioning these places, and may involve upfront investment in developing these new facilities. Similarly, the new approach to transition requires fundamental changes in the culture and practices of local organisations, breaking down barriers between children’s and adult services. Transition is a perennial issue, with very similar ideas for change included in Valuing People (2001), the difficulty in overcoming these barriers is evidenced by the repetitiveness of calls to break them down.

 Managers at ATU’s would need to begin to ensure that every resident has a discharge plan, and actively work to reduce the numbers resident in ATUs. This is problematic, as there is no rational incentive for these institutions to shrink themselves.

Managers and commissioners at local authorities and in the NHS will need to improve the way they involve and engage families. This could be achieved through coproduction approaches similar to ‘Working Together for Change’ where people that use services and their families work together with providers and commissioners to design and implement strategic change (Bennett and Sanderson 2009).

Implementing such engagement programmes and other ‘localism’ measures is made more difficult when government austerity measures have impacted significantly on local government finances (Lowndes and Pratchett 2012), not least because such engagement is likely to require time and money investing into it, both into engagement workers in local commissioning bodies, and into carers and self-advocacy groups in the voluntary sector, as well as buy in from leadership for it to be more than tokenistic (McCabe 2010).

Local authority and NHS Managers are also instructed by the Concordat, and other government policies, that they need to be working in a much more integrated way, with pooled budgets and local collaboration through Health and Wellbeing Boards (Lamb 2013). There is a long history of attempts to integrate Health and Social Care, and results up to recently have been disappointing, Wistow (2012) argues that this is because the NHS has a culture that tends toward national uniformity, while local authorities exist in situations of local diversity. Any integration has occurred in peripheral functions, rather than core provision. Changing this requires deep cultural change in both sectors.

Applying Management and Leadership Theories to the Changes Advocated by the Concordat
One big obstacle to the implementation of the Winterbourne Concordat may be that it has coincided with a major restructuring of the NHS, and in the context of increasing complexity of commissioning within it (Goodwin 2011). Bruce Tuckman describes the stages of team effectiveness as ‘forming, norming, storming and performing’ (Tuckman and Jensen 1977). In the case of the NHS it has been formed and reformed by successive governments, and the current reforms have been particularly drastic, and while it was hoped the new Clinical Commissioning Groups (CCGs) would have geographical boundaries contiguous with those of local authorities, in many places it has not worked out like that on the ground. (Coleman et al 2014). Reorganisation has led to a period of instability during the forming and norming period, while people work out who is who in the system, and who is responsible for what.

It may be now that the new system has “bedded in” that progress on the Concordat becomes easier, McCafferty et al (2013) believe that the new organisations are likely to be receptive to implementing policies, providing they are clear, coherent, achievable and there is buy in from stakeholders. Kotter’s approach (1996) to change may be useful here. He argues that 70% of attempts to implement significant change in organisations fail, and puts forward eight stages. The first three are to establish a sense of urgency, to create a coalition to guide progress and to create a vision. On paper this was there in the Concordat with that ambitious target to achieve significant changes in numbers incarcerated in ATUs by June 2014, and with the signatures of leaders of all the most powerful institutions in Health and Social Care.  The abject failure to progress implies that these commitments were not taken as seriously by the signatories as the wording of the Concordat suggests, with Lamb admitting “it’s business as usual in too many places” (Wiggins 2014).

The next steps are communicating the vision, and empowering broad based action, however the disruption caused by austerity measures and significant reorganisation in the field seem to have cut across this empowerment to find the funding to create new local community based provision. Bill Mumford, new director of the Winterbourne Joint Improvement Programme pointed out the lack of clarity in the vision: “Nobody defined what ‘appropriate’ was, and nobody quite understood what the numbers were.” (ibid) There also seems to be a paucity of ‘short term wins’, the sixth of Kotter’s stages leading to the programme being branded “hopeless” (ibid). Lamb has vowed that he is “more determined to see this through” which corresponds to stage 7: ‘never let up’, but the total lack of progress means that there are no changes to be incorporated into the culture.

The sheer number of stakeholders named in the Concordat (over 50) creates a “diffusion of responsibility” (Wallach and Kogan 1964, Leary and Forsyth 1987) where individuals are less likely to feel accountable for an action or inaction due to the presence of a number of others and due to the lack of clearly assigned responsibility, this effect, similar to the ‘bystander effect’ (Darley and Latane 1968) noticed when people fail to come to someone else’s aid increases in conditions where the victim is unknown to members of the group. The social and emotional distance between people with learning disabilities and their families and carers, and the powerful people charged with leading health and social care could thus be a key factor in accounting for this lack of action. Chris Hatton (2014b) suggests that similar bystander apathy was a factor in the death of Connor Sparrowhawk on a well-staffed ATU. It could be argued that overcoming this apathy therefore requires the finding of ways of reducing this social and emotional distance, so that powerful leaders feel some personal connection to people in the ATUs and their families, as well as assigning to them a clearer personal responsibility to address the situation.

Narratives and storytelling are one way of bringing about organisational change (Boyce 1996, Hurwitz, Greenhalgh and Skultan 2008, Maas 2012). Well told stories that bring home the personality and individuality of people in the ATU, like the story of Connor Sparrowhawk being told by his mother and a coalition of his allies (Ryan 2014, #107Days 2014) could serve to begin to bring home some of this understanding if they are shared throughout the sector. A serious approach to coproduction is therefore needed, that brings together people that use services, their families and carers and key local decision makers (Durose et al 2013) so that they can share their narratives in a way similar to that suggested by Downing (2005) where entrepreneurs and stakeholders tell stories together and make sense together is another way of beginning to address this distance.

  Figure 1. shows a ‘Forcefield Analysis’ (Lewin 1943) of some of the factors promoting towards the desired goals in the Winterbourne Concordat, and of the factors that are creating resistance to this change. Leaders use the forcefield analysis to think about how they can enhance the factors promoting change, and weaken those resisting change. In this case the factors resisting change seem mighty. However there is also a deeper cultural shift occurring: expectations are very different today from what they were 30 years ago, and it is the contrast between community based provision, self-directed support and the lives people are achieving through person centred approaches and the lifestyle endured by people on ATUs that throws this situation into sharp relief.

To paraphrase Thompson (1967):The environment is changing, and therefore so should the company. The cultural change in wider society, towards people insisting on more choice and control in their own lives and away from deference to authorities and experts that are rapidly discrediting themselves needs be reflected deeply in the culture of services. “Culture eats strategy for breakfast” (Drucker cited by Braun 2013). However the 3000+ people in ATUs and their families are unlikely to wish to wait for small iterative accretions of cultural change to reach a ‘tipping point’ (Gladwell 2000), where the ATU and its current practices are simply no longer acceptable in our society.

Bringing about the change envisaged by the Concordat given it’s poor performance so far requires the increased use of cultural and change catalysts in Health and Social Care organisations. For the concordat to succeed, a fundamental shift in power relations in Health and Social care needs to occur, and so far the attempts to dismantle the Master’s house with the master’s tools (Lorde 1984) have failed abjectly.

Approaches for Personal and Strategic Change:

A strategy to bring about change then needs to begin by looking at the strategies attempted by families like Connor Sparrowhawk’s themselves. They attempted to hold a person centred review around Connor at the ATU, which at the time the professionals there found confusing and alien to their practice (Hussein and Hyde-Bales 2014). Holding a series of person centred reviews is part of the first stage of ‘Working Together for Change’ (WTfC) (Bennett and Sanderson 2009) a coproductive change process that brings each element of the system together, including people, families, providers and commissioners to think about how to achieve strategic change. This effect of bringing elements of the ‘whole system’ around a single person is deeply powerful as it reveals so starkly the change that needs to happen. The rich discussions held at such a review help turn grey statistics into colourful stories about real personalities.

Given that the average cost of a week in an ATU is £3000 - £4000 (FPLD 2014) the resources are there for each person in an ATU to have a person centred review. This could involve the people who commissioned their place at the ATU, along with family, friends, advocates and others who know the person well.

A person centred review has 7 questions, including “Questions to Answer, Issues to Resolve” (Sanderson and Mathieson 2004) the key issue to consider here would be “what would it take for this person to live in their own community”, and the answers to this question used to devise the resettlement plan demanded by the Concordat. For some people, a ‘Community Circle’/Circle of Support (Sanderson, Carr and Neill 2013) approach might well be an appropriate way of mobilising the thinking and action necessary for a resettlement. A person centred review could be the starting point for the formation of such a circle. Where leaving the ATU immediately seems impossible, the other questions in the person centred review: what’s important to me now? What’s important to me in the future? What helps keep me healthy and safe? What’s Working, and What’s Not Working? can be used to involve families and allies in improving the day to day support of their loved ones.

To overcome the effects of diffusion of responsibility, each person in an ATU should have a named person with the necessary authority from the commissioning agency who is personally responsible and accountable for ensuring this happens. This may require some upfront allocation of resources, but this is justified by the potential improvements in the life of the person, not to mention potential savings on the high cost of ATU treatment.

Similar work needs to be done with people currently living in the community who are at risk of being moved to an ATU, particularly with young people in transition. Each authority could then bring together the rich person centred information gathered at these Person Centred Reviews for the next stage of the WTfC process; a coproduction session which brings together self-advocates, families, providers and commissioners to think together about the issues raised.

Doing this around the question “What would it take for us to bring these people back home?” could focus local people and agencies on the task of creating adequate local provision. Processes like the ‘5 whys’ devised by Sakichi Toyota as a method of root-cause analysis (NHSIII 2008) which are used in WTfC will help these local coproduction efforts get to the deep rooted reasons why adequate local provision and skills mix for the people housed in out of area ATUs is either not present or has not been used, and make action plans to address these reasons.

Another key outcome of such coproductive work would be the development and deepening of productive relationships and partnerships, as local commissioners, providers, self advocates and families work together on delivering good lives individually through person centred approaches, and more strategic level 2 and 3 change through person centred coproduction techniques such as WTfC.

Kotter (1995) has told us that the majority of big organisational change efforts fail. The Winterbourne Concordat’s first 18 months makes it appear likely to be one of these failures. Leadership and Management Theories give us clues about how to address this, but I think it likely that 90% of those powerful people who put their signatures to that concordat are well-versed in leadership theory; learning to be articulate in such management and leadership discourses will have been a requirement for attaining their current senior positions. This knowledge has not however enabled them or their organisations to deliver on the targets they signed up to.

Bennis (1989) argues that leaders tend to reflect and defend the culture that put them into their positions of leadership, while real innovation requires people to dissent and “thumb their noses” at the “way we do things round here”. The experience of the survivors of Winterbourne, and of Connor Sparrowhawk, along with the backward movement on the Winterbourne Concordat suggest that current structures and leaders in health and social care in this area are still failing to involve and engage people in their own support, and to become partners in the strategic direction of services. Radical person-centred action is needed to involve those who wish to deliver change, particularly those with a personal stake, who understand it is vital for their lives, in the strategic direction and change processes of the services intended to support them.


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