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 http://uncoverostomy.org/blog/  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!

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.

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..."

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.

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!

 

 



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.

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.