How John’s story made people think… Do our lives matter?

It’s been a while since I’ve blogged here… We’ve been blogging away on our project website, but let me pick it up again and tell you about my work here. First of all, let me copy-and-paste a blog post I wrote a couple of months ago for the Victoria & Stuart Project, which brought back so many memories that I want to share it on this website too, in case you missed it.

Thinking about John

The year is 2006. I am a brand new researcher, sitting in the Research Advisory Group in the first year of my first major study into the needs of people with learning disabilities who are at the end of their lives. I am reading the group the story of John Davies, one of my first research participants.

John has been diagnosed with a devastatingly advanced form of penile cancer. He has ignored his symptoms for many months, and despite initial hopes to the contrary, both surgery and chemotherapy have proved insufficient to keep the cancer at bay. He is dying, and he knows it.

I explain to him that my job is to tell the stories of people like himself, and he is delighted, because telling his story is one way to make sense of it. He takes ownership, dictating the story of his life and his illness fluently into my little microphone. It is the draft of this story I am reading to my group of advisors, which includes a professor of learning disabilities, a hospice doctor, a psychiatrist, and two people with learning disabilities. As part of ongoing data analysis, I want to get their perspectives on it.

“Hello, my name is John Davies,” the story starts.

“I am 44 years old. I’ve got cancer, and I don’t want to happen to other people what happened to me. I left it far too late.”

John talks briefly of his childhood: “Name calling is the worst thing that happens, and it’s no picnic being called a spastic. But then I’ve learned to think, ‘sticks and stones break my bones’… and I just kept plodding along, going along in my own little way.”

He then quickly moves on to telling us how he became seriously ill, how he went to the doctor with pain when he went to the toilet but was sent home with antibiotics for a urine infection, and how he subsequently ignored worsening symptoms. First he thought it would clear up (the doctor had said so), but then he simply became too embarrassed to tell anyone. He explains:

“I really found it difficult when it got worse. I found it difficult to hide because by then it was noticeable not only to me (I could see it), but everybody else could smell it. There was a bad smell coming, and it didn’t matter how many times I got in the bath… My mum noticed that I was getting skinny. I said not to worry, that I was OK. But I wasn’t really OK at all. And I was very tired.

In the end I just went home and went to bed, and I didn’t get out for 4 days. My mum said to my brother: ‘You go round and see John, I am worried about him’. So my brother came round, pretending that he was just passing by and that he wanted a cup of tea. Well, if he wanted a cup of tea he wouldn’t have got one because I had the tea bags but no milk: I hadn’t been out of bed for 4 days. I just had bottles of water beside me to drink from, and I was using a bucket to do wee-wee. There was nothing coming out the other end because I weren’t eating anything. I’d let it get untidy and there was a bad smell because I couldn’t empty the bucket that had the wee-wee in. I hadn’t been able to keep the house clean, everything that was in the house smelled of wee-wee. Later on the council had to come and fumigate the whole house.

When my brother came he just took one look at me. I tied the coat round me but the coat fell off and he saw this lump, and this stuff coming out of it… It made him feel sick. He just got on the phone and called the ambulance there and then. And I got carted off to hospital.”

The story continues with treatments, in and out of hospital, hopes raised, hopes dashed, and worst of all: having to tell his mother that he has cancer.

He concludes:

“Sometimes I think: I wish… But you could wish a thousand wishes, and there is nobody with a magic wand to make it better. Sometimes I look at myself and think, ‘I lost my dingly-danglies. And I could have saved them. Now I take one day at a time. Life is too short, so I take one day at a time. You try to make the best out of a bad thing, which is what I have been trying to do.”

I manage to get to the end of reading the story, just about.

But by now, several people in the meeting are so distressed that we stop, make some more tea, and talk about it. The doctors and nurses in the group are devastated by the terrible sequence of events, from first mis-diagnosed symptoms to the final verdict that the cancer has come back and John will die. But our two advisors with learning disabilities are particularly upset. They are crying. What has upset them most? There was barely anything in John’s story that was not upsetting.

But what they focused on was the one thing I had glossed over, one thing I had not picked up as important.

“He was bullied at school,” one advisor says. “That happened to me.”

The other advisor nods, in tears: “Yes, me too.”

That was my first lesson in the importance of having people with learning disabilities help us with making sense of what we hear in our research. They brought a perspective that turned out to be crucial. They helped me see that your life-long experience of not being important, not being valued, shapes the way you experience serious illness.

Yes, John was devastated by having such a terrible form of advanced cancer, but he was unexpectedly uplifted and delighted by all the attention he received in the hospice: “They treat me like a king”. And he could never have dreamed that anyone would ever want to read his story. I managed to get it published under his own name (we had to go back to the Research Ethics Committee to allow him to do this), and I showed him the proofs nine months after I first met him. He was amazed and delighted.

“I have achieved everything now,” he said.

He died a few days later. You can read his story here.

I have never forgotten John. He has stayed with me all these years.

He also became the posthumous model for the main character in the Books Beyond Words story Am I going to die? (We used those pictures a lot in our focus groups).

John Davies on stage, supported by St Christopher’s Hospice, a few weeks before he died
Image based on John Davies, taken from Am I Going To Die?

Fast-forward 17 years: The Victoria & Stuart Project.

Nine people with learning disabilities are meeting in the All Together Group, to help us think about good ways to plan for the end of your life. We are experimenting with the “Washing Line” idea: telling the story of your life with pictures and other items pegged along a long line that symbolises your life. We wonder whether that might help us think about the remaining, still-empty bit of washing line: What would you want to see there?

Richard has agreed to try it out. We think we know his story already, as he published his a book about his life  last year. It’s a brilliantly triumphant one of achievements against the odds. Richard starts his washing line as he starts his book, with him mum who was told to “put him away” along with his disabled brother, because they’d never achieve anything. We watch and smile and cheer as his line fills up with being a college student, a baker, a swimmer, an artist, an advocate, and eventually a university researcher. Someone who lives in his own flat and makes his own choices.

And yet, at the end of all this, when I am thinking about the marvellous way in which we can now all visualise and applaud Richard’s life (and applaud we did), and pondering how that might help planning for what comes next, there are tears in the group. Why?

Because Richard’s parents were told that he was not worth anything.

The person who cries about this (“That brought back memories because the same happened to me”) has others wiping their eyes. Me too, me too.

And once again I am stopped short. Here we are, busy trying to make sure people are valued at the end of their lives, trying to make sure they have their wishes met when they are dying. But perhaps we are not quite seeing the huge impact of being told, right from when you are first born, that you shouldn’t really have been alive in the first place. That your parents shouldn’t have any more children in case they have another one like you.

A lifelong message that is reinforced by bullying and abuse, discrimination, by the unspoken (perhaps no longer noticed) impact of nobody coming to sit next to you on the bus.

Making end of life choices? In advance? And people actually listening to your wishes?

Perhaps that possibility is as surprising, maybe even unimaginable, as it was for John to find himself treated like a King and see his name in print.

How easy is Easy Read?

“Too many pages of Easy Read are boring and stressful. We won’t read them.”

That was the loud and clear message from the Staying Alive and Well group. They are my colleagues with a learning disability who help us with jargon-busting saying easy words.

There are seven people with a learning disability in the group. They looked at different examples of making complicated information easier to understand and then held a series of meetings to ask ten other people with a learning disability for their opinion.

Easy Read came third on the list of preferences, after ASKING SOMEONE TO EXPLAIN and VIDEOS.

Easy Read was developed for people with a learning disability to help them understand important information. It uses short sentences, easy words and pictures. If you’re new to this concept, you can google it or read more about it on this page from PhotoSymbols (we, along with many others, often use their brilliant pictures).

“Translating” important but complicated documents into Easy Read is definitely 200% better than having no easier-to-understand information at all. In fact, when a new and important document is published that concerns people with a learning disability, I tend to go to the Easy Read version first.

But how easy is Easy Read for people with a learning disability? Is it easy enough? Is there any way of making it even easier?

This is what our groups said, having looked at different types of Easy Read documents as well as other formats of accessible information (stories, picture books, videos):

Easy Read is OK. Some people really like it. They are used to it. They want to see more of it.
But it needs to be short – just a few pages. No more than five pages.
If it’s longer, split it into different parts, with colours.
And please, could you also put the Easy Read information on a video.

We asked the question as part of a Finding Out More* mission: “What is the best way for you to find out more about diabetes?”

                *We’ve dismissed DEEP DIVE as definitely not being easy

It made us think, not just about diabetes, but about everything we try to make easier to understand. So now we were faced with a serious challenge. Can we put our money where our mouth is?

The next task for the Staying Alive and Well group was to make the LeDeR 2021 Annual Report accessible. It definitely – DEFINITELY – ticks the box for being important to understand. It analyses what happened to 3,304 people with a learning disability who died in England in 2021. What did they die of? How old were they? Who was most at risk from what? Lots of questions, and crucially this one: How does that compare to people in the general population?

The full report is 93 pages long, and that’s not counting all the extra bits (“See Appendix” etc). It’s packed with complicated numbers, tables, pie charts, and complex explanations. But at the heart of it, there are people who lived, were loved, and died. That’s the awful part. We are talking about people, yet we have to look at numbers. It’s important to understand the implications of the numbers. The implications have stayed distressingly similar, year after year of LeDeR reports, so really, it is saying nothing new.  Until the numbers change dramatically and the need for LeDeR is eliminated, we need to keep reporting and we need to keep making sure that is is easy to understand. (Are deaths ever easy to understand? Especially avoidable deaths?) However frustrating that change is slow, or you might say non-existent.

We were helped by the efforts of those who produced LeDeR’s Easy Read reports in previous years. They included a lot of detail, which was an advantage but also a disadvantage, as it took it the Easy Read documents to well over 40 pages. How on earth could we distill all this in the few Easy Read pages people said they preferred? We worried about leaving too much of the detail and nuance out of it. But in the end, we agreed that having a few pages that you might actually engage with is better than feeling so overwhelmed by the information that you don’t take any of it in.

This is the first year that the new Staying Alive and Well group had this job. I’m grateful to the group members, because thinking about so many people dying is not easy. Not ever. Especially if this could be about you. Especially if you recognised, among all those numbers, the stories of friends who had died. But they all came to the meetings and kept coming, because they insisted it was important. (And of course they were paid for their work on this report.)

This is what we did.

Step 1: Present the report in sections, with different colours.

There are six chapters in the main report. Having listened to the group, we turned these into six different colours. Initially, we numbered them as well – but we noticed that people got in a muddle when they read this out, so they asked to get rid of the numbers altogether:

  1. The grey part: Who died, and how old were they?
  2. The yellow part: What did people with a learning disability die of?
  3. etc.

Step 2: Not too much detail. 

You simply cannot explain more than the headline messages. That means that you have to figure out what your headline messages are. Helpfully, the big main report now has a page of key “Take Away” messages at the start of each chapter, but even that was sometimes too much information for our group. Here are two of the key “Take Away” messages from The Grey Part, which we all thought should definitely go into the Easy version:

6 out of 10 people living with learning disability died before they were 65.

On average, males with a learning disability die 22 years younger than males from the general population, and females 26 years younger than females from the general population.**

But even in those key messages, there was too much information. We found that making things accessible involves taking things out. And then taking more things out. And more things. The hardest thing is deciding what to keep. So, we asked ourselves again and again: WHAT IS MOST IMPORTANT HERE?

Sometimes, on the other hand, we found that we had to put things in. Explain things. Put them into context. Why is it so important to know that only 40% of people make it past the age of 65? It’s because in the general population, it’s more like 85%.

**It’s so upsetting that these figures have barely changed… we get a similar headline year after year after year. Some people might see it as mildly positive that the average age of death for people with a learning disability is now 61 years, whilst in 2019 it was 60 years. But I am part of the much luckier “general population” and can expect to live well into my 80s, and all I can see – and my disabled colleagues with me – is the still too glaring gap of 22 years.

Step 3: Communicate your message in the easiest possible words

When we asked people what makes information easy to understand, they said “stories”. It’s probably true for all of us. Stories are so important, because they are about people, and people matter. It’s the awful stories of people who died too young, those that died avoidable deaths, that we remember and that should be the catalysts for change. Oliver McGowan. Richard Handley. Connor Sparrowhawk. They are just a few among so many, too many. Our group really understood the importance of their lives and deaths, and by implication, the lives and deaths of all the people in all the LeDeR annual reports.

But in this report, we were not talking about just one person, but about more than 3,000 people. There is an important place for the lessons we need to learn from each of their stories, but here, we were talking about averages and percentages. “Some people lived until they were 85, but many didn’t.” How to explain this?

We tried it in various ways and listened carefully to what people were able to explain back to us. What did they understand best? We ended up with this:

Of each 10 people with a learning disability who died, six died before their 65th birthday.

But of each 10 people who don’t have a learning disability, only one died before their 65th birthday.

People with a learning disability usually died 22 years earlier.

The group thought about each sentence, each word. Should it be 22 years younger? or 22 years earlier? It was time consuming but worth doing, because so many times, the group improved my own attempts.

Step 4: think about INFORMATION and EXPLANATION

Most of our accessible report is information.

What was good about people’s care?
Annual health checks helped people get good care.
Learning disability liaison nurses helped people get good care.

But there were times when we thought that extra EXPLANATION was needed – sometimes this wasn’t in the main report, so we had to add it:

They are special nurses who understand what people with a learning disability need.

Chapter 5 on Avoidable Mortality was the most difficult to explain. In fact most of that part of the Easy Read version (The orange part: Could more people with a learning disability have lived longer?) is explanation, different from the main report, and probably still not quite understandable enough. This is the main report’s “Take Away” finding:

49% of deaths were rated as “avoidable” for people with a learning disability. This compares to 22% for the general population.

But what exactly is an avoidable death? How to make sense of this? Trying to explain it, I realised I didn’t completely grasp the finer details myself. As always, trying to explain things in an easy way really throws up your own shortcomings in understanding. Initially, I could not make this chapter understandable, so I had to spend some time getting my head around it. I’m not sure we succeeded in making this complicated chapter truly accessible, but we tried to make a start. It is arguably the most important chapter of all.

Step 5: Find images that REALLY explain what you are saying.

These are complicated concepts, so the words had to be supported by images that really helped to communicate the message. They should, ideally, be able to stand alone. We tested this by showing images before the words, and asking people to tell us what they thought the images were saying.

It was difficult, not least because death is so difficult and upsetting. Not making death clear was unhelpful, but was it too harsh to represent it clearly? There was no nice way of showing that over 3,000 people have died. The people in the group didn’t like the harshness of gravestones, for example, but then decided that taking away the gravestones made it less upsetting, it also made it less clear. In the end, they went for clarity.

We tried several ways of presenting the numbers. We don’t claim to have got it right. Different people understood different images. One person in the group really liked pie charts, but not everyone understood those. The group initially liked this pie chart draft, but it was rejected after we had to add more pie slices (the numbers are not quite right here, but with everything added in properly, it became even more confusing):We ended up with images like this:

Explaining 61% as “six out of ten people” was easier than the more accurate “sixty-one out of a hundred” or (as one external advisor would have preferred) the actual exact number out of 3,304. Here is our final approach to the “six out of ten” message:

But throughout our Easy Read report, you will see several different approaches. That’s because we found that repeating the same concept for different messages (e.g. ten people and their gravestones) was in danger of becoming not just confusing but “boring” and “stressfull”.

The strongest image ideas came from the group. How to show, without words, that on average people died 22 years earlier? One group member said, Well, they won’t have as many birthdays. So we could show birthday cakes and then cross them out.

In the video version (see Step 6) they thought we should make the cakes quite literally disappear. We played Happy birthday over it, stopping abruptly once it had counted down 22 cakes, with a gravestone appearing. I can’t say often enough how shocking this statistic is, and how shocking it is that it has changed so little since it was first reported in 2013. When we showed the video to non-disabled people, who (like me) had read these statistics year after year, they said that it really brought home the grim reality of it. We can know things, but sometimes we need the simplest of explanations to really understand them – and it is my learning disabled colleagues who were able to point out what the LeDeR findings mean to them, personally. We won’t have as may birthdays as you.

Step 6: Create not just a paper version, but also a video

Actually, our group insisted that the video should come first. The paper version of the LeDeR 2021 Easy Read Report looks quite different from what you may be used to. It’s two or three main picture-messages on a coloured page. That is mostly because we concentrated on the video, so the paper version is really a video-on-paper. We haven’t followed the standard credo of “picture on the left, sentence on the right”. I have no idea whether this is any good, so please tell us.

The video was made using PowerPoint slides with our group members reading the text, coping admirably with the jargon. Minority ethnic backgrounds. Avoidable. Reasonable adjustments.

We have thrown convention and rule books in the wind. Whilst this was based firmly on the views and contributions of our colleagues with a learning disability and feedback from their peers, it was only a handful out of thousands and thousands of people with a learning disability who they tried to represent. As an academic researcher, I’d much rather have tried and tested everything more carefully before releasing it into the world.

So we would really love you to give us feedback. You could be our testers. Tell us what you think and we will hopefully get better and better in making Easy Read truly Easy. We need to hear this, because we think we should do more. Whilst we could only include a few key messages, we would like to say a little bit more about each coloured part, perhaps in six separate, shorter videos.

And next year, I’m afraid we will have to do the same job again. We’d love the LeDeR programme to become redundant and unnecessary, because lessons have been learnt and acted upon. I’m hoping against hope that in next year’s video, we get to keep all the birthday cakes, but change is slow and I’m not holding my breath.

In the meantime, let’s all say THANK YOU to Richard, Frankie, Lee, Maggie, Amanda, Andrew and Joanne, and all those supporting them.


Jargon busting

Jargon busting Saying easy words

I love the way in which my colleagues and collaborators with learning disabilities help me to understand my job by simplifying the language. My colleague Richard leads the way in this. (If you haven’t met Richard, you can read about him here and here).

One of the delights of doing research with people with learning disabilities is also one of the greatest challenges. How to make sure we all know what we are talking about? For example…

Jargon alert #1
LeDeR: Learning from Lives and Deaths of People with a learning Disability and Autistic People

That’s the name of the project we started working on last autumn. It’s led by Kings College London who will do all the complicated things: looking at thousands of reports of deaths, doing the number crunching, figuring out whether (and crucially, why) people died before their time.

The job for Richard and myself (at Kingston University) is to lead the Co-Production Partnership (jargon alert #2! Co-Production Partnership? How about Working Together?). We set up a group of seven (so far) people with learning disabilities who meet once a month on Zoom.

It was clear at the first meeting that LeDeR was a confusing word that invited thoughts of Boris Johnson (no, we’re not talking about that kind of LeaDeR…) and was only understood after a fairly lengthy explanation. What to call this project then? We sat down in the office to ponder the matter. Richard knew the answer.


Well, bingo. We threw Richard’s suggestion into the group, and into other groups (we happened to give a couple of talks during the following weeks). There was a unanimous thumbs-up. Finally, we knew what we were talking about! Preventing premature deaths – that does indeed mean Staying Alive.

We later decided to expand it to Staying Alive and Well, because this work isn’t just about stopping people dying too young: it’s about making sure that everyone lives a life that is as full and healthy as possible. So now we not only have a name that tells me what I’m supposed to be thinking about, but also a theme tune that sees us dancing on Zoom whenever our brains get too frazzled from thinking and talking.

We also have a logo, courtesy of a competition we launched for people with learning disabilities. The winning entry was judged solely by the group members with learning disabilities (I didn’t get a vote).

Jargon alert #3
Deep Dive

We’re now onto jargon alert #3. NHS England has asked us to do a couple of Deep Dives every year. It’s taken us months to come up with a good way of understanding what that means. My suggestion of Having A Closer Look was vetoed by the group, because are we really going to take a magnifying glass and actually look at something? We have settled on Finding Out More.

People with learning disabilities are the real jargon-busting experts. At our most recent Staying Alive group rmeeting, we spent a good couple of hours going over the easy-read report I’d written about the work they did for a Finding Out More question about diabetes. I was rather proud of the easy sentences I’d come up with, but quite a few of them were rejected and then improved by the group. My version…

TOP TIP: Make sure doctors and nurses know where to find accessible information.

The group’s improved version…

TOP TIP: Make sure doctors and nurses know where to find VIDEOS and EASY-READS about diabetes.

The joy that is emerging from the jargon busting (sorry: saying easy words) challenge is that it forces me to clarify (and thereby understand) what I’m actually talking about. Accessible information? What does that mean? THIS is what it means. We want videos and easy words.

Try it. I challenge you to try explaining your work to a complete novice in just one minute, using NO JARGON. For someone who needs easy-to-understand language, that might be all you’ve got, so you really need to understand what lies at the heart of your work. If you can do it, congratulations. If you’re struggling, join the club, and let’s keep working at it.

I am still struggling with this one…

Jargon alert #4

(or perhaps this was jargon alert #0, as it has been with me for years and I still haven’t managed to solve it, despite having asked many people with learning disabilities.)

In the meantime, Richard has found a jargon-free way to describe all three projects he is working on. There’s the Growing Older, Planning Ahead study we initially employed him for last year, looking at ways to support older people with learning disabilities who live at home with their families to plan ahead for the future. Then there’s our new study starting next month, on end-of-life care planning with people with learning disabilities.

So now, Richard will tell you, our week looks like this:

I’ll be Staying Alive on a Tuesday, Growing Older on a Wednesday, and Planning My Funeral on a Thursday.

Welcome to the world of a University Research Assistant.

You can follow us on twitter:
@AliveLeder (Staying Alive and Well)
@derwem (Richard Keagan-Bull)
@TuffreyWijne (me)

Is it possible to make assisted dying laws safe for people with intellectual disabilities or autism?

My quick answer to that is: If it is, then I have yet to hear about it. Let me explain.

Here’s a real-life (or rather, real-death) situation.

A woman in her 70s had stomach cancer. She had part of her stomach taken out, which quite probably cured her. But now she had to learn a new food routine – lots of small meals, rather than the three square meals a day she was used to.

She couldn’t cope with this. The woman was autistic and probably had an intellectual disability as well. She lived in the Netherlands and asked for euthanasia, which was granted. She died in 2020. The report on the Dutch Euthanasia Review Committee website explains why this fell within the legal euthanasia due care criteria of “intolerable suffering without prospect of improvement”:

The physician has clearly described why he was convinced that the patient’s suffering was hopeless and there was no other reasonable solution. The inability of the patient to cope with her new limitations stemmed from her Autism Spectrum Disorder, which was not treatable. (Case 2020-114)

This story is not unique.

I have blogged about this before. I am haunted by it. In 2017 and 2019, we published papers on our research into Dutch euthanasia cases that involved people with intellectual disability or autism (see here and here).

It’s my least favourite research topic, and yet it is arguably one of the most important, because the implications are so enormous.

It is probably these papers that led to a request for me to present evidence to the Quebec Select Committee on the Evolution of the Act respecting end-of-life care.

(This is a euphemism if ever there was one. Much along the lines of the Dying with Dignity Bill. I absolutely prefer the Dutch straightforward approach. Theirs is called the Termination of Life on Request and Assisted Suicide Act, which at least does at is says on the tin.)

However much I wish this topic would simply go away, I felt it was my duty to inform the Quebec Select Committee of the facts. If you are contemplating expanding assisted dying laws, then you need to know what the implications are for your most vulnerable citizens.

The wonders of Teams meant that I didn’t have to fly into Canada, but could talk to the Committee this afternoon from the comfort of my own home, with a translator speaking miraculously into my ear via headphones and a phone app.

It’s so important that I am publishing my full presentation to the Select Committee on my blog. It was followed by 40 minutes of questioning, which you can watch here if you understand French (as it’s dubbed), or on the video below without the dubbing (introduction and questions in French, but my presentation and my answers to questions in English).

Presentation to the Quebec Committee on the Evolution
 of the Act respecting end-of-life care
25th May 2021

Thank you very much for inviting me to present evidence to this Committee.

My name is Irene Tuffrey-Wijne. I am a professor of Intellectual Disability and Palliative Care at Kingston & St George’s University in London, UK.

In the next 20 minutes:

  • I am going to tell you who I am and what work I do;
  • I am going to define intellectual disability and autism;
  • and then I’m going to give you the evidence from my research as to what happens to people with intellectual disability or autism in a situation where the law has been changed to allow euthanasia for them.

But before I do that, I want to put before you these fundamental questions:

  1. If there is a change in the law, where does your duty lie to make sure that the changed law is safer and better for your citizens than if there is no change in the law?
  2. What is your duty of care to citizens who have a disability? What is your duty of support and suicide prevention, trying to improve their quality of life, and at what point do you abandon those efforts and offer them an assisted death?

My area of expertise

I speak to you today from my somewhat unique perspective as an expert in end of life care for people with intellectual disabilities or autism, and the world’s first professor in this subject. I would like to set out both the scope and the boundaries of my expertise. I am a nurse with extensive clinical experience in both intellectual disability and palliative care provision. For the past 20 years, I have conducted research into the experiences and needs of people with intellectual disabilities at the end of life.

With regards to the assisted dying debate, it is also important to point out that I am a citizen of the Netherlands and lived there until I moved to the UK in early adulthood. I have detailed research-based insight into both the laws and the practice of euthanasia in the Netherlands in relation to people with intellectual disabilities or autism, which I will draw upon for this presentation.

I am not in a position to comment on assisted dying legislation for people with psychiatric illness, or indeed for any group of patients or people other than those with intellectual disabilities or autism.

Definition of intellectual disability and autism

First of all, let me clarify what it means to have an intellectual disability or autism.

Intellectual disability is a lifelong condition that begins before adulthood, and results in impaired intelligence. People also have a significantly reduced ability to cope independently. It is a very broad spectrum. People will need varying degrees of support throughout their lives.

Autism spectrum disorder is a complex and usually lifelong developmental disorder. It is characterised by persistent difficulties with social communication and social interaction. Autistic people often find more difficult to build and maintain friendships. They also find it difficult to filter information, and can be over-sensitive to sounds or other sensory stimuli. Autistic people can find it very difficult to cope with changes of routine.

Although autism spectrum disorders are common among people with intellectual disabilities, not all people with autism have an intellectual disability. Asperger’s syndrome, for example, is a type of autism that is characterised by average or above-average intelligence.

Research evidence

Now let me tell you about my research. The aim of this presentation is not to promote a particular side of the assisted dying argument, but to contribute to the debate by discussing the implications, including the risks, for two particularly vulnerable patient groups. I am going to focus on three things:

  1. the nature of the “intolerable suffering” that led to euthanasia requests from people with intellectual disabilities or autism in the Netherlands;
  2. capacity assessments;
  3. and the nature of healthcare inequalities internationally.

I will use the term “euthanasia”, as that is used in the Netherlands. It means a physician-administered death in response to a request from a patient to terminate their life. Whilst physician-assisted suicide is also possible, in over 96% of assisted dying cases, patients in the Netherlands opt for euthanasia rather than assisted suicide.

Case reports from the Netherlands

We analysed 38 case reports of people who had mild intellectual disabilities, autism, or both, and who died through physician-administered euthanasia between 2012 and 2020. These case reports are publicly available on the Dutch Euthanasia Review Committee website. As you will know, all cases of euthanasia in the Netherlands are reported to a Review Committee, who scrutinise them – typically over 6000 a year, of which an average 80 are published each year, with the specific aim to show how the committee applied and interpreted the legal due care criteria, and how they dealt with particular challenges.

The Dutch system of transparent reporting of euthanasia cases is unique in the world. In my view, this is essential in ensuring scrutiny and patient safety.

In our analysis, we focused on the question whether any particular difficulties arose when the euthanasia legal due care criteria were applied to patients who had an intellectual disability or autism spectrum disorder.

I can refer you to our published papers if you would like to know more details of our study, or indeed of the Dutch due care criteria and systems for scrutiny.

Intolerable suffering

My first examples illustrate my findings and considerations around the question of intolerable suffering without prospect of improvement, sometimes also translated as “hopeless” (this is part of the Dutch due care criteria).

In many cases, the suffering was described as not being able to keep up in society, feeling excluded from it, an inability to maintain relationships, depression, sadness and distress at not being the person they would like to be, and difficulty in coping with changing circumstances. People with autism had difficulty coping with what they experienced as an overload of stimuli, such as noise.  For example, here are some quotes (the translation from the Dutch is mine). This is a man in his 70s with mild intellectual disability and autism who died through euthanasia in 2020:

Because of his autism, he found it increasingly difficult to cope with the changes around him. As he got older, he became less able to cope and his anxiety increased, eventually leading to intolerable suffering.

And a man in his 30s with Aspergers, who died in 2014:

The patient suffered from the fact that he had a great need for closeness with others whilst he couldn’t maintain long-lasting social contacts. This was because he misjudged interactions and was inclined to behaviour that crossed boundaries.

The difficulty here is that these patients’ suffering arose not from symptoms of an illness, but from the characteristics of autism or intellectual disability itself – as was the case for those who were highly dependent, had difficulties with social functioning, difficulties in coping with social circumstances, or a tendency not to cooperate with treatments. In a number of cases, physicians thought that further attempts at treatments or interventions were futile, as the patient wouldn’t cope with it, or would simply not cooperate.

Intellectual disability, with concomitant difficulties with social communication and relationships, could make it more difficult for patients to cope with the changes that come with ill health and ageing, or to weigh information, or to understand and accept possible alternatives.

In many of the case summaries, the term ‘suffering’ was used to describe the normal variations in behaviour and perceptions seen in people with autism which are an inherent part of the person. I could give you many more examples of this. Statements about the lack of prospect of improvement, such as “intractable symptoms”, “refractory to treatment” and “palliative treatment”, are meaningless in the context of lifelong disability.

So, one question I am raising is:

To what extent do the characteristics of certain groups of people make them eligible for assisted dying?

Or is the suffering described in these case reports in fact a result of society’s failure to accommodate and support the needs and characteristics of people with autism or intellectual disability?

Capacity assessments

My next examples are to illustrate the difficulties with assessments of the patient’s decisional capacity and competence. One was a woman with intellectual disabilities in her 30s who had a brain tumour in childhood, which had been in remission for 10 years. She was now suffering from unexplained physical symptoms, which one psychiatrist thought might be due to sadness that her life wasn’t what she had hoped. He found it difficult to assess her capacity, because of her coping style. This consisted of crying or indicating that she didn’t know, which made it very difficult to ask further about her euthanasia request.

There was disagreement between physicians about this patient’s capacity, which was not unusual in case reports where the patient had an intellectual disability. But she was granted euthanasia in 2020, because of the consistency of her request and the fact that she could describe alternatives to euthanasia. This is also not unusual.

A woman with intellectual disabilities in her 60s suffered from tinnitus. Her doctor had explained to her that most people learn to live with this, but, and I quote:

Because of her primitive thinking abilities, the patient was focused solely on eliminating the tinnitus completely. Once she realised ‘I will never get rid of it’, her suffering became intolerable and hopeless to her, and she was then only focused on euthanasia… She remained focused on her euthanasia wish, partly due to her low level of intelligence.

A persistent request does not necessarily imply capacity.

It might even be indicative of a lack of capacity, if the patient’s intellectual disability leads to difficulties in considering or weighing up alternatives. If stringent capacity assessment criteria were to be applied in this case, it may well be that the patient’s inability to appreciate the significance of the information in relation to her own situation, and to weigh up treatment options, would render her incapable to make a euthanasia decision, however persistent her request.

This takes me to the most commonly used and influential model for assessing whether a patient has the capacity to exercise autonomy in making healthcare choices: the MacArthur model, which consists of four abilities (also known as the “Appelbaum criteria”):

  • to understand the illness, the various treatment options and their potential benefits and risks;
  • to appreciate the significance of that information and how it applies to themselves in their personal situation;
  • to weigh up options using reasoning and logic;
  • and to communicate a choice.

The difficulties many people with intellectual disabilities have in rationally manipulating information with regard to their situation, the consequences of their decision and the possible alternatives make them particularly vulnerable when the bar for capacity assessment is not set high. Of all four Appelbaum criteria, appreciation ability is undoubtedly the most difficult to understand and measure.

The problem is that impairment of decision-making capacity lies on a continuum, but the judgment of decision-making capacity is an all-or-nothing concept (either the patient has capacity to take a particular decision, or he doesn’t).

Where on the continuum the cut-off point for competence lies, is therefore a matter of judgement.

Many, including Appelbaum himself, have argued that the stringency of capacity tests should vary directly with the seriousness of the likely consequences of the patient’s decisions.

I would argue that euthanasia should only be open to those with a high degree of mental capacity to make such a request. For a life-or-death decision such as this, the bar for capacity should be set high. I am happy to discuss this further with you if you wish.

Health and social care inequalities

Finally, I want to point out that we have to be extremely conscious of the possibility of diagnostic overshadowing, where there is a negative bias impacting on a clinician’s judgement. There is strong evidence from around the world that people with intellectual disabilities or autism have been poorly treated and even died unnecessarily, due to poor decision-making by healthcare professionals. Numerous reports in recent years have suggested that the lives of people with an intellectual disability are valued less across society, and that their short life expectancy results from inappropriate value-laden decision-making by healthcare professionals.

When we look at the Dutch case reports, it was mostly accepted by doctors that suffering could consist of psychological pain, dependency, social isolation, loneliness and a lack of coping mechanisms that were a result of intellectual disability or autism. There were also several examples of rigid thinking, where the patient was fixated on the idea of euthanasia and unable or unwilling to consider alternatives. In the Netherlands, where most citizens are aware that they can ask for euthanasia if they feel their suffering is hopeless, it is inevitable that people with intellectual disabilities or autism can ask for it too; and as equal citizens, they have a right to do so. But the fact that the disability itself, rather than an acquired medical condition, can be accepted as a cause of suffering that justifies euthanasia is deeply worrying.

If the “intolerable suffering” does indeed result from living with the limitations of intellectual disability or autism spectrum disorder, then it is inevitable that it is hopeless. This, too, is evident from the case reports. In cases of persistent treatment refusal, or persisting problems despite having tried many different approaches and treatments, physicians tend to reach the conclusion that euthanasia is the only remaining option for the patient. In fact, many of the case reports were clear in their observation that autism is not a treatable condition, and therefore, the patient’s inability to cope with life was not treatable either, and therefore, euthanasia was a suitable option.

Bearing in mind the poor record of decision-making by healthcare professionals about people whose capacity is in question, who behave or communicate differently, or whose lives may seem to lack quality, I question whether such professionals are in fact the right people to make decisions about eligibility for assisted dying. Of course physicians can write clinical reports about the condition in question, but I would argue that the decision about eligibility should be one made in a legal setting, such as a court, after having heard evidence from the health professionals. There are many precedents for using the courts to make weighty decision, such as keeping a person in hospital or moving them to a residential setting against their will.  This would provide prospective monitoring, i.e. before, not after, the death of the patient, and improved safeguarding.

I am in no doubt that the patients in the Dutch case reports did indeed suffer deeply and consistently. However, we know that people with disabilities experience severe inequalities in opportunities and in health and social care provision, which may well play a part in their situation being “hopeless”. Current society is not a level playing field, where everyone has a full range of life choices and can make autonomous choices about them. This makes it perhaps all too easy for people to request euthanasia, and to be granted such a death as a “way out” of painfully difficult situations and circumstances, rather than addressing underlying issues of inequality and a lack of adequate support for people with very complex needs.

I am not convinced that euthanasia was a suitable solution in most of the cases we reviewed.

I am going to come back to my initial question. You will have to be able to answer those two questions with clarity if you are going to make a sound decision.

Is changing the law safer and better for your citizens than not changing the law?

And what is your duty of care to your citizens who have disability?

At what point do you abandon your efforts to improve their quality of life and offer them an assisted death?

Thank you for listening, and I am happy to answer your questions.


Full details of the research cited in this presentation can be found here:

Tuffrey-Wijne I, Curfs L, Finlay I, Hollins S (2018) Euthanasia and assisted suicide for people with an intellectual disability and/or autism spectrum disorder: an examination of nine relevant euthanasia cases in the Netherlands (2012-2016). BMC Medical Ethics 19:17

Tuffrey-Wijne I, Curfs L, Finlay I, Hollins S. (2019) “Because of his intellectual disability, he couldn’t cope.” Is euthanasia the answer? Journal of Policy and Practice in Intellectual Disabilities. 16 (2), 113-116



Vaccination joy: A good week for people with learning disabilities in the UK

I never thought I’d see those words in the same sentence, during a pandemic no less:
But oh, the joy of those headlines.

The Joint Committee on Vaccination and Immunisation (JCVI) has advised the government that EVERYONE on the GP learning disability register should be prioritised for a Covid vaccine.

Not just (as had been the case so far) those with Down Syndrome or those whose learning disability is severe or profound. Now, everyone who is on their GP’s Learning Disability Register will be fast-tracked for vaccination.

The relief that common sense has prevailed. Or (as the BBC1 newsreader announced it) people power has prevailed. It is an extraordinary turnaround, and worth pondering. How did this happen? What can we harness and build on? Because believe me, there are so many more turnarounds needed before people with learning disabilities are truly part of our society, treated equally, with equal chances of being healthy and happy.

What hasn’t prevailed, it seems, is a true understanding from the key scientists and policy makers of the nature of these inequalities, and indeed the nature of learning disability.

I was ecstatic on the day this news was announced. Messages flying around on social media and WhatsApp. My phone red-hot. My conversations with my colleagues, advisors and friends with learning disabilities were particularly wonderful.

Me: “Have you heard the news!”
Amanda: “I have! My support worker told me! I can’t believe it!”
Richard: “My news report last week on the BBC and Jo Whiley has done some good!”
Vince: “It just goes to show that our voices can make a difference!”

(Here they are, speaking on the BBC news on 24th January)

So I nearly choked on my muesli when I read in the morning paper what Professor Anthony Harnden, deputy chair of the JCVI, had said: Despite adding everyone on learning disability registers to the priority list, people with mild learning disabilities should not approach their GP yet.

“We don’t want everybody with a relatively mild learning disability to come forward to be vaccinated now. That would cause problems because there are over 1.5 million of those individuals.”

Hang on a minute. Yes, there are well over a million people with learning disabilities in England, but that’s the best possible estimate. Less than a quarter (about 250,000) are registered with their GP as having a learning disability. This population is hidden, and that’s part of the problem. Those with mild learning disabilities are most likely to be part of this hidden group, yet they face significant barriers in accessing equal healthcare.

One and a half million people approaching their GP saying “I have a learning disability, please put me on the register, please give me the vaccine”? Wouldn’t that be brilliant. It would mean that they would be able to get a free annual health check, they would be asked what reasonable adjustments they need (more time for appointments? Easier information? Bring it on!). It is a dream scenario. It might be a good start in preventing future avoidable deaths.

The fact that this is seen as a nightmare scenario by the very people who advise on these matters, shows a worrying degree of mis-understanding about the root causes of inequalities in healthcare. Poorer health outcomes don’t just stem from underlying health conditions (although there are plenty of those to be had among people with learning disabilities). They also stem from people struggling to negotiate the healthcare system, unconscious bias among healthcare staff (we all have it, I’m no exception, it needs constant vigilance), and lack of reasonable adjustments.

So, all hail to People Power. The power of the media, too, in not just bringing this to the country’s attention, but keeping it in the headlines day after day. Jo Whiley and her sister Frances were, of course, the catalysts, and we cannot thank them enough. To talk to the media when you are torn apart by worry about your sister, fighting for her life in hospital, cannot be easy, however much you are a celebrity used to microphones.

Frances Whiley with her sister Jo

But so many others were ready to back her up, as they have been campaigning for months. People with learning disabilities themselves, and their families and carers, were at the heart of this. So many have been shouting about their concerns and distress.

Mencap (who have now moved swiftly along to campaigning for people with learning disabilities to join the GP learning disability register. Share this if you can!).
The PCPLD Network – we put out a campaign video in November and a vaccination webinar last month
Academics, supporting them with facts (like Professor Chris Hatton, for example, whose regular analysis of all the different and often confusing data I rely on).

But what was absolutely needed was the public to get behind it, and not shrug their shoulders: “Oh well, yes, very sad, but what can you do.”

I think what happened is that people began to see Frances as a PERSON.

Someone who matters, someone you really want and need to be part of your community and family, not in spite of who she is, but because of who she is. This message was also given by the mainstream news channels, who gave a voice to people with learning disabilities themselves as the main experts. (It was a joy to work with the BBC team on this!)

But unconscious bias remains. It is very hard to see the discrimination and disadvantage unless you are affected by it.

Being seen as “other”, less important, less worthy of saving (don’t even get me started on inappropriate DNAR orders), less worthy of vaccinating despite the evidence screaming of risk.

Perhaps it is telling even in the most innocent looking of news headlines, like this one: A huge relief for families… 

You can’t argue with it. It is indeed a huge relief for families. But isn’t the relief greatest for people with learning disabilities themselves, who are now a step closer to seeing their families again, and to going back to the life they know? What this headline shows me is that many people can put themselves in Jo Whiley’s shoes, and that is a great step forward, but we are not there yet.

We need to put ourselves in Frances’ shoes.

People with learning disabilities six times more likely to die of Covid-19… The numbers are shocking

Like many of you, I have just watched the news and read the papers.

Finally, Public Health England has published their report on Covid-19 deaths of people with learning disabilities in England.

Here is the summary, and here is the full report. It is a review of available data on the deaths of people identified as having learning disabilities in England, from the start of the Covid-19 pandemic until early June 2020.

These numbers should make headline news. Here is Ciara Lawrence, who has a learning disability herself, speaking on Channel 4 News last night (and can I just say well done Ciara, but also well done Jon Snow for not only headlining this but including people with learning disabilities among the experts to comment on this report).

Here are some of the shocking figures.

The rate of Covid-19 deaths among people with learning disabilities are estimated to be about 6.3 times higher than in the general population.

There are many estimates in the report, because there are so many ifs and buts, so many incomplete records and so much missing information. Most tricky of all is the fact that the majority of people with learning disabilities are hidden. Their learning disability is not noted in any records. The figure of “six times higher” is adjusted for those missing people. But even the most conservative estimates (looking at just the people with learning disabilities that we know about for sure) show that their death rate of Covid-19 is at least (AT LEAST) 2.3 times that of the general population. That’s the most conservative estimate, and shocking enough in itself.

If you are a young adult with learning disabilities (age 18-34), you are 30 times more likely to die of Covid-19.

Yes, you’ve read that right. THIRTY TIMES. It seems that the younger people with learning disabilities are, the greater the disparity with the general population. For higher age groups, the numbers are still very grim too. People with learning disabilities aged 35-44 are 19 times more likely to die of Covid-19. Those aged 45-64: 10 times more likely.

This pandemic is affecting the entire population of people with learning disabilities, not just the old.

I really don’t know what to say about all this.

Because haven’t we seen this coming? Haven’t we said it before, that people with learning disabilities are at huge risk, and we should pay attention?

The numbers on which this newly published report is based have been in the public domain for months. From families, learning disability organisations and campaigners to those with a real understanding of the numbers (thinking especially of Professor Chris Hatton here, who has kept us all looking at the numbers and thinking about the implications): Red flags have been waved since the early summer.

All I have now are questions. WHY and WHAT?

Why are these numbers so high? The report gives various possible reasons. Some of these are to do with physical health. The higher prevalence of health problems, such as diabetes and obesity. The fact that so many people with learning disabilities die of respiratory conditions, even before the pandemic.

Other possible reasons are social, emotional, cognitive and communication-related. The difficulty people may have in understanding and following lockdown restrictions and guidance on infection control. Or the challenges they have in communicating symptoms.

But the truth is, we don’t really know which of these factors have the greatest influence on death rates. That means that we don’t really know what’s the best way to address it.

What are we going to do about it? In a way the answer is obvious. Put resources into supporting and protecting this population. They should be right up there, on the VULNERABLE list. Of course care and protection needs to be individualised. Putting entire groups of people into isolation or give everyone the same shielding advice is not sensible. But what is sensible, is to ensure that all health and social care services recognise the dangers for this group of people. And most importantly: to ensure that they have the support and the resources to protect and support people with learning disabilities.

That means easy access to testing for all people with learning disabilities, staff and families. It means investing in giving people with learning disabilities the support they need to cope with lockdown measures. It means adjusting policies so that this can indeed be done. It may be that the very best person who can really help support someone with complex needs is a family carer currently prevented from visiting.

Among my many questions, there is a worry that this devastating report is going to be quietly forgotten. I have some niggles…

Why has it taken so long for this report to emerge? (The numbers were available in June. It is now November.)

And why isn’t this on the front page of all newspapers, and the headlines at all news channels?
I’m just imagining what would happen if the report had found this:

Students at universities in England, aged between 18 and 34, are 30 times more likely than non-students to die of Covid-19.

Can you see the headlines? The action? The investment in trying to understand this, reduce it, support students in whatever way was needed?

THAT is the kind of investment I want to see for the 1.5 million people with learning disabilities in the UK.

The brave new world of webinars, podcasts and Zoom

Nothing like a pandemic to shine a light on inequalities.

That’s how I started a blog post five months ago, when we were in full lockdown and the world was unfamiliar and scary. I don’t have to tell you about all the things that have been difficult, painful, stressful, worrying and just plain wrong.

But now, six months later, I come up from being submerged in a sea of strangeness, take a deep breath and look around at this new landscape. I still see things that are difficult, painful, stressful, worrying and just plain wrong. But I can also see something else.

Nothing like a pandemic to make us embrace new ways of connecting.

At long last! I’m writing a happy blog post about something positive!

A few days ago, the PCPLD Network hosted an online webinar. This is a great network of people who are championing the need and the right of people with learning disabilities to live the best and longest possible life, and then to have the best possible care and support at the end of it. I was the chair for a while (a position I’ve just handed over to Gemma Allen).

When the pandemic hit the world, we felt paralysed. Along with everyone else, we cancelled one thing after another.

We closed nominations for the Linda McEnhill Award scheme (we reckoned that the people who usually send us examples of outstanding practice – those working in palliative care services or learning disability services – had better things to do now than write nominations).

And we cancelled our conference, due to be held on 16th September in Cardiff. We were gutted. We had such excellent speakers lined up. Our conferences were our main networking events. If we couldn’t meet, how could we be a network?

PCPLD Network Conference in London (2018)

It seems obvious now that the thing to do is to host a webinar instead, but back in the spring, this felt new and scary. How would it work? Would anyone watch it? But as we had to hold and Annual General Meeting for our 300+ members, which could only really be done via video link, we thought we might as well try and add in a couple of online talks.

We would have expected some 150 people to attend our conference, so who knows, perhaps we could get that many people to attend online? Especially if we made it free, rather than the £100 we’d have to charge for a “real life” conference? (That’s what it would cost for us to break even on venue costs, speaker travel and hotel, delegate lunch etc).

Well, how about this.

Over 1400 people watched our webinar live, with many more catching up on it later.

If you’ve missed it, you can catch up too. Here it is.

The feedback has been so overwhelming. And all I can think now is: How amazing is that! Thousands of people all over the world who are connecting with these issues! Who are interested in finding out more, doing things better, sharing knowledge!

I am also thinking: Wow, this was hard work and lots of preparation, but now we know how to do it, we can do more!

I absolutely love it that this way, we can really communicate and talk to each other. I love it that we can include people in this who would never otherwise have been able to joins us, because conferences are:

  • too expensive
  • too far away
  • too time consuming
  • too intimidating (all these professionals!)

In our webinar, we could include the pre-recorded voices of people with learning disabilities and families, simply by holding a Zoom conversation with them. No-one refused. It’s so much less scary than standing up in front of an audience or speaking live online. (It also means that we could pare their talks down to the core messages, which was so much more impactful.)

Here’s an example of one such pre-recorded Zoom conversation, with my friend Richard. He had told me about a funeral he’d attended online, and how hard that was – so we simply talked about that once more on Zoom, and pressed RECORD. We used part of that clip in this trailer for the webinar:

We showed six such films during the webinar, each lasting just two minutes, and it was immensely impactful to hear the voices of these Speakers with Experience (experience of lockdown, and experience of having a learning disability). It also helped to keep the audience engaged.

I hope that you, too, are discovering the possibilities of this new online world. For what it’s worth, let me share with you what we’ve learned about putting on a successful webinar.

My top tips for webinars

1. Don’t do it alone. Get a team together.

Our team was just brilliant, sharing ideas for content and technical possibilities for months before the webinar. There was the PCPLD conference team of Gemma (our new chair), Louise Jenkins and Sharon Prowse, who brainstormed ideas for content. Anastasiya Stravolemova did all the technical stuff almost single-handedly, from editing videos to making sure the live event went without a hitch. For the live event, she enlisted the help of a colleague – so we had two “producers” behind the scenes, who sent speakers and videos and slides live at the right time. Louise monitored and published the comments that came into the Q&A box, whilst Gemma was busy live-tweeting the event. We had over 600 comments and Twitter went into overdrive, so both could have done with help! All I had to do on the day was sit in front of my computer and talk through my script, trusting the rest of the team to make it all work.

2. Choose your platform – and get to grips with it.

We thought about Zoom and Microsoft Team Meetings, but by now we were watching registrations climb well into triple figures, and most platforms have a limit on the number of attendees (although things are changing and improving all the time). We were incredibly lucky that Kingston University (where I work at the Faculty of Health, Social Care & Education) had just signed up to Microsoft Live Events, and not only agreed that we could use it, but helped us with the technical side (THANK YOU!!). They didn’t now what hit them. This was their biggest online event ever, so it was both interesting and hair raising to test this unfamiliar platform.

We practiced for hours. We tested everything, including the ability of external speakers to come on air. Just as well, as we discovered lots of things that could (and did) go wrong during those rehearsals. I won’t bore you with the details. We were so very happy when it paid off, and it all ran like clockwork on the day.

For recorded interviews with people who are not used to technology (and especially people with learning disabilities), I find Zoom is easiest.

3. Think carefully about your webinar content.

Have sympathy for your audience. It is much more difficult to keep your attention and focus when you’re sitting at a screen. It helps to have lots of variety of voices and things to look at. We were worried about asking Dr Kathryn Mannix to cut her planned one hour talk down to just 15 minutes, but were pleasantly surprised that this was effective. This particular webinar was quite complicated (only 1.5 hours to fit in 7 films, 3 speakers, Q&A and an online song!) and we won’t be able to go to that level of preparation more than once a year, but we’ll definitely think about incorporating several short sessions or speakers in future webinars.

We are planning more webinars!

By popular demand. There will be a monthly lunchtime webinar.

In fact I’ve spent today recording a couple of online conversations. Baroness Ilora Finlay‘s comments about Do Not Resuscitate caused some confusion among the listeners, and really needed more time and explanation. So I talked some more with her today, and also spoke with the mother of a severely disabled daughter about her experiences of being asked by doctors “Would you like us to resuscitate your daughter?”

I am incredibly excited by this brave new online world. How amazing that you can talk to a mother in the Netherlands, then show that conversation to an expert in Wales and get her to comment on it, all on a Sunday afternoon!

Oh, and this week I’m recording my first ever podcast, on “What words do you use when talking about death with people with learning disabilities?” That’s a novel venture for us, and I have no idea how it all works, but will give it a go.

So watch this space. And join us!

PS if you want to be kept up-to-date with all these future events, follow me on Twitter, or better still, become a member of the PCPLD Network. It’s free.

People with learning disabilities and Covid-19: We need to tell the stories and count the numbers

We need stories and we need numbers.

That’s how we make sense of things. Journalists know this. In newspapers and on the BBC news, we are told that over 40,000 people have died from Covid-19 (so we can see how big it is), and then we are told stories of a young nurse who died, of a father who can’t be visited in his dying days, and of funeral after lonely funeral (so we can see how bad it is, and how heart-breaking).

Sometimes the stories come first. A doctor in Wuhan tells colleagues of a patient with strange new symptoms. Then another doctor tells a similar story. And another. Better start counting. These Wuhan stories were followed by numbers, and then by lockdown and travel bans.

Sometimes the numbers come first. We look at the figures of Covid-19 deaths and see that the very vast majority are elderly people. Better start understanding why, and what the stories are behind those figures. These numbers were followed by letters from the UK government telling over a million people to stay at home for 12 weeks.

Stories plus numbers should lead to action.

Guidance, policies, funding, priorisation, training, support. Numbers and stories show us who needs to be prioritised for testing, for PPE, for support, for funding, for training.

In an emergency like the Covid-19 pandemic, we must not wait for the most complete evidence or a full understanding of what the numbers mean. The best outcomes have been in countries were governments did not wait for the evidence of comprehensive numbers before taking action. Get people off the streets, quick. Get care staff into PPE. You can always relax the rules later, when we know and understand more.

Some of the action has been too slow, and the results are close to catastrophic.

When stories emerged of care home residents dying of suspected Covid-19, with dismal levels of PPE and little guidance for staff, that should be enough to ring the alarm bells. Start counting the numbers, but also, start putting in the right support measures.

That same catastrophe also threatens people with learning disabilities.

It is obvious, by now, that attention must be paid to groups of people who are at disproportionate risk from Covid-19. We have learnt from the numbers and the stories that this includes quite a few groups of people. Elderly, underlying health condition, living together in a group, dependent on close contact with carers: BINGO.

Quite why it took so long to figure out that people in care homes are at risk is beyond me, but at least that awareness is now leading to action, albeit slowly.

So why is no such action apparent when it comes to people with learning disabilities?

Of course not every person with a learning disability is at risk (just as not every 85 year old will succumb to the virus), but overall, they tick quite a few boxes that should ALERT us. If we are to Stay Alert, as we are told we must, I’d quite like to see policy makers Be Alert for starters.


There are some very good reasons for Being Alert. Let me spell it out once again. I hope you are able to skip this next bit because you know it already, but here goes.

People with learning disabilities:

  • Are “dying before their time” already. ALERT! We’re talking about people dying roughly 25 years earlier than the general population.
  • The most common reasons for dying too soon are:
    • Delays or problems with diagnosis or treatment
    • Problems with identifying needs and providing appropriate care in response to changing needs
    • I want you to read that again. It’s highly relevant to the Covid-19 situation. ALERT!
  • Have much higher rates of co-morbidities. That’s “underlying health conditions” in Covid-speak. Think diabetes, heart disease, lung problems. Startling fact: 41% of people with learning disabilities who died in 2018, died of pneumonia or aspiration pneumonia. ALERT!
  • Continue to be at risk of unconscious bias, where their lives are not as highly valued. ALERT! Stories abound of families having to fight for their sons, daughters, siblings, to make sure they get the healthcare they need. (What other mother is ever asked “Could you explain what your son means to you?”)
  • Often share the same risks as people in care homes:
    • they live together with others
    • they depend on others to provide physical care, which can’t be done at a 2 metre distance
    • they may find it difficult to understand the need for lockdown measures. ALERT! ALERT!
    • They face huge barriers to getting equitable hospital care. ALERT! See here for some further thoughts on this.
    • Learning disability services are under-prepared and under-supported to meet the needs of a population at risk and in lockdown. ALERT!

We have heard some moving stories from heart-broken families. It’s been on the news and in newspapers. I found Rory Kinnear’s story particularly poignant:

“My sister died of coronavirus. She needed care, but her life was not disposable.”

So, with those stories, and the knowledge we already have of the extreme vulnerability of this population, we need to start taking action.

Testing please

One of the things we must start doing is ensuring that people with learning disabilities, and those who live with them and support them (families, care staff), have speedy access to Covid-19 tests. Tests are now available to care home residents, but (and I quote here from the government website) “at the moment, you can only get tests if your care home looks after older people or people with dementia”.

So, no luck getting hold of tests if you are managing a home for six people with learning disabilities in their 50s, several of whom are rather frail and have already been in and out of hospital with pneumonia. If there is a logic, it eludes me.

Numbers please

Whilst sorting out the support measures, we REALLY need the numbers. As soon as possible, which is as soon as they are available.

The LeDeR programme

The initial pledge from NHS England to publish data on Covid-19 deaths in next year’s annual report of the ongoing national Learning Disability Mortality Review (LeDeR), was just not good enough. It is too late, in 2021, to find out about people with learning disabilities who died of Covid-19 in 2020.

There is a system in England for reporting every single death of a person with learning disabilities, along with the cause of death and several other characteristics (age, gender, etc). This now includes the reporting of confirmed or suspected Covid-19 deaths. They are sent to NHS England every week.

I am really pleased to see that just as I was writing this blog post, NHS England has released these weekly figures. Here they are, hot off the press.

As I said before, we all know that no numbers are perfect. They need to be contextualised. We will need to understand how these numbers compare – with deaths in a similar period last year; with the general population; etc. But it’s a start.

I am more of a story person than a number person – or, in academic jargon, I’m better at qualitative research than quantitative research. Thankfully, there are some outstanding number researchers out there, who have been waving the flag for number crunching. They can explain it much better than I can. I highly recommend Professor Chris Hatton’s blogposts. He, and his colleague Gyles Glover, are the Kings of Numbers, and they can really help us here.

The LeDeR team is brilliant at combining numbers with stories, and I’m sure they will be looking into the details of these Covid-19 deaths.

The Care Quality Commission

There have also been pledges from the Care Quality Commission to make available the numbers they’ve got, and to start analysing them properly. Their figures show that deaths in homes where people with learning disabilities may live, were up 175% compared with last year.

I’m not quite sure why releasing this information needed a request from the BBC. Perhaps there is a worry that the figures are taken out of context, or mis-interpreted (indeed the CQC warns against this). But from where I am sitting, it seems that we can do the interpreting as time goes on. Please keep giving us the numbers.

NHS Covid-19 daily deaths

It’s the same with the figures that are now finally being collected and published as part of the reporting on NHS Covid-19 daily deaths. This shows that of all confirmed Covid-19 deaths in hospital, 2% had a learning disability or autism.

At first glance, that looks reasonable. After all, it is estimated that around 2% of the population in England has a learning disability. BUT… read this, from the 2015 report by those Kings of Numbers, Chris Hatton and Gyles Glover (and a few other royals):

Estimates suggest that only 23% of adults with learning disabilities in England are identified as such on GP registers, the most comprehensive identification source within health or social services in England. The remaining 77% have been referred to as the ‘hidden majority’ of adults with learning disabilities who typically remain invisible in data collections.

In short, only about 0.5% of the population in England is known and recorded to have learning disabilities, to the extent that they would show up in the NHS Covid-19 table. Now, I’m absolutely not a Queen of Numbers (and please Kings and Queens of Numbers out there, correct me if I’m wrong), but it sounds to me that “2% of people who died of Covid had a learning disability” is NOT in line with the population figures. It’s at least four times more than I would expect.

Moral of this blog post:

  1. Tell the stories.

  2. Count the numbers.

  3. And as you go along with the counting, SHOW YOUR WORKINGS, so that we can…

  4. Start working out what it all means, and

  5. Take action, based on all available evidence.

And if any government person is reading this, could I please point you to numbers 2 and 3 of your own advice:




I have Stayed Alert, but I cannot Control The Virus and Save Lives of people with learning disabilities, unless there is action from the top.

Reasonable adjustments for people with intellectual disabilities during the Covid-19 pandemic

Nothing like a pandemic to shine a light on inequalities.

It’s bigger than a spotlight. It’s floodlights.

Unsurprisingly, it’s society’s most vulnerable and marginalised people who are first to fall through the cracks. The elderly, the homeless, the disabled, those with mental health problems, the institutionalised (prisoners, people in care homes).

It is not just a physical disadvantage (age, underlying health conditions) when faced with a virus that can kill.

It is also a social disadvantage. The difficulty (even inability) of some people to maintain social distance – because they live closely with many others, or because they are dependent on carers (who come and go) to provide intimate physical care, or because they rely on carers to speak up for them but are unable to do so now, or because they are already socially isolated in society with little support, or because they simply do not speak the language. That list goes on.

Then there’s the emotional disadvantage. The problem some people have in coping with the need for isolation and social distancing, or in understanding it.

And how about the disadvantage in accessing health and social care services, because the system doesn’t speak your language, meet your needs, understand your needs, or even see that there is a problem?

When it comes to disadvantage in a pandemic, people with intellectual disabilities (or learning disabilities, as we say in the UK) top the charts, as they so often do. Many people with intellectual disabilities fit into so many of the DISADVANTAGE boxes (I know people who fit into all of them), it’s a miracle they keep going.

The good thing about floodlights is that suddenly, the inequalities become visible to everyone. And with it, the need for reasonable adjustments becomes blindingly obvious.

Reasonable adjustments are a legal requirement. It means that health services must make changes in their approach or provision, to ensure that their services are accessible to people with disabilities as well as everybody else.

The absolute need for this is pretty obvious for some kinds of disabilities. You wouldn’t expect people who use a wheelchair to make do with the stairs to your first-floor clinic on the basis that “everyone else uses the stairs, and we treat everyone the same, don’t we?” Equal and equitable service doesn’t mean the same service. For people who cannot manage the stairs, you either put in a lift to ensure that they can use your service – that lift is a reasonable adjustment – or you remove the barrier altogether by moving your clinic to the ground floor.

The need for reasonable adjustments for people with intellectual disabilities has often been less obvious to health care providers. So, we hear stories of carers who are asked to leave hospital at the end of visiting hours, even when those carers are needed to make sure the person stays relaxed enough to cope with hospital, help him to communicate his needs, ensure he doesn’t pull out all his tubes or wander around drinking other patients’ water. But the hospital staff will tell them, “He can’t have visitors all day. Where would it end! Other patients will want it too!”  (I haven’t made this up. It happens.)

It is heartening to see that there are so many excellent resources coming out now, shining that all-important light on the need for reasonable adjustments for people with intellectual disabilities. Here is an example, a one-page guide for hospital staff, from Hampshire Hospital NHS Foundation Trust.

It is wonderful, also, to see how quickly NHS England recognised that some people with learning disabilities are unable to be in hospital without a carer or family member present. Their guidance that people in hospital could not have any visitors was updated on 8th April, permitting one visitor (an immediate family member or carer) in exceptional circumstances. You are now allowed to visit if the patient is dying, or a woman in labour (and you are the birthing partner), or a child, or:

You are supporting someone with a mental health issue such as dementia, a learning disability or autism, where not being present would cause the patient to be distressed.

Then there’s the government update (29th March) on what you can and can’t do during the lockdown. On the question Can I exercise more than once a day if I need to? it says (see point 15):

If you (or a person in your care) have a specific health condition that requires you to leave the home to maintain your health – including if that involves travel beyond your local area – then you can do so. This could, for example, include where individuals with learning disabilities or autism require specific exercise in an open space two or three times each day – ideally in line with a care plan agreed with a medical professional.

Take note. This is what reasonable adjustments for people with intellectual disabilities can look like.

Without reasonable adjustments, people with intellectual disabilities are at a very serious disadvantage. You simply cannot use blanket policies, procedures or approaches for everybody. This, too, has become much clearer during the Covid-19 pandemic, when policies and procedures had to be drawn up very quickly.

The guidance for doctors to help them decide who should get an intensive care bed was based on the blanket use of the Clinical Frailty Scale, which (as I explained in my previous blog post) is utterly inappropriate for people with intellectual disabilities. It was quickly updated with the explicit instruction that this point-scoring scale should not be used for people with intellectual disabilities or autism.

The fact that it needed disability rights campaigners to point it out, just goes to show how easily the need for reasonable adjustments is overlooked.(“Pointing it out” is a polite way of saying “There was an outcry”.)

So, the whole nation is learning fast.

We are learning that poorly paid immigrants who work in care homes and hospitals are, in fact, as indispensable to us as their (equally poorly paid, alas) British colleagues. Let’s hope the weekly applause is turned into a pay rise and more welcoming attitudes, lasting well beyond the pandemic.

We are learning that we must look out for the most vulnerable people in society and support them. Let’s hope that the spirit of altruism, volunteering and general kindness lasts beyond this pandemic, too.

We are learning that if we want to make sure that people with intellectual disabilities are not disadvantaged, we have to do things differently sometimes.

I hope there is another thing we will all learn, and it is this:

Getting it right for people with intellectual disabilities will help all of us.

I’ve said it before. You can quote me on this. I think we could all benefit from the highly individualised approaches that people with intellectual disabilities need. I can be pretty confident that hospital staff who get it right for them, will also get it right for me. Making sure that people with intellectual disabilities get the right care and support should be your Gold Standard. It is the litmus test for health and social care providers.

I also think we could all benefit from the straightforward communication and the practical ways that can support people with intellectual disabilities. The excellent new guide from the National Bereavement Alliance, Keeping in touch when you can’t be with someone who is so ill that they might die, includes suggestions that we have found to be useful for people with intellectual disabilities, including those with the most profound disabilities (giving the person a favourite jumper of cushion to hold; using smells, sounds, music).

For more practical ways to support people with intellectual disabilities when someone dies during lockdown, see this guide: When someone dies from coronavirus (one of a couple of resources I wrote with Books Beyond Words to help people with intellectual disabilities during the pandemic, downloadable here, free of charge).

Twelve days ago, I suddenly found myself having to use the guide I had just written myself.

It is called Jack plans ahead for coronavirus . It is a guide for family and carers, to help them think ahead with people with intellectual disabilities about what would happen if they became ill, and what they would need to take to hospital.

Suddenly floored by the virus myself (or I think that’s what it was – difficult to know without testing), and in bed with a sky-high temperature, I was too ill to explain to my husband what to prepare in case I had to go into hospital. He started thinking aloud. Phone. Charger. Toiletries. I knew there was more on the list but couldn’t quite remember what it was. I tried to mutter something about a one-page profile with crucial information about me.

Thankfully, Jack plans ahead had just gone online. “Just look it up,” I said. “It’s all in there.”

(In case you’re worried: This story has a happy ending. My temperature started dropping and after a week in bed, I’m now completely fine. But now we all know what to do, just in case.)

And it just goes to show. When we are ill or old or vulnerable (and that day will come for most of us), we could all do with something straightforward. One day, we too might need the reasonable adjustments that are so often necessary for people wit intellectual disabilities.

Once again, they can teach us how to be our very best.

Coronavirus and people with intellectual disabilities

The coronavirus is turning our lives upside down.

The impact is almost impossible to get our heads around. When I think of people with intellectual disabilities, my mind boggles. How to support them? Almost all the things we normally do, everything that counts as “good practice”, all the advice we usually give around coping with difficult changes (such as death and dying): almost all of it involves contact, rituals, direct communication.

Helping people to take part in funerals. (There will be no funerals.)

Helping people to visit sick relatives, to help care for them, to say goodbye. (There will be no visits.)

Getting together to share the grief together. (There will be no getting together.)

The list goes on. I am heartened by the swift efforts to produce helpful materials and guidance. Lots of services, organisations, publishers, professionals, carers, managers are publishing easy-read materials, tips and ideas for coping.

For example, Beating the virus is an excellent new set of pictures from Books Beyond Words for example, which tell the story of a woman who is ill with the virus and coping at home. You can download it here free of charge. The pictures are evolving, but they are making them available even during the development stage, for those who need them urgently. Wonderful.

One of the pictures in “Beating the virus” ©BeyondWords

Let me keep you posted about things that I have been involved in. Here are two, for starters.

1. How do you talk about COVID-19 to people with intellectual disabilities?

This is an article I wrote for Open Future Learning, drawing on my experience of “breaking bad news”. You can find it here.  We usually think about death and dying as the typical “bad news”, but coronavirus is also very bad news indeed. The article has lots of hints and tips, as well as a short video clip.

2. Covid-19: ‘The Clinical Frailty Scale is not suitable for use with people with learning disabilities’

This is an article I wrote for the Nursing Times (reproduced below with permission). The speed of relevant things being published at the moment is impressive. I was asked to write it 2 days ago; wrote it yesterday; and it was published today. (I guess that’s what it must feel like to be a journalist with short deadlines – very different from being an academic whose papers take the best part of year to be published!).

The article was written in response to the publication of NICE guidance on clinical decision making in hospitals (which COVID-19 patients should be referred to critical care?).


Let me introduce three people with a learning disability: Janet, Harry and Alison.

They are all in their 40s. They have lots of friends and families who love them. They all have carers coming into their homes to support them for various lengths of time.

Janet lives on her own, but needs a bit of help with finances, transport, heavy housework and medications. She also needs a little help with shopping and meal preparation. Janet loves her hard-won independence.

Harry lives with a friend. He needs help with all outside activities and keeping house. His bedroom is downstairs because he has problems with managing the stairs. He also needs help with bathing and minimal assistance with dressing.

Alison lives with her sister and is completely dependent for personal care, because of both physical and cognitive disabilities. Just to be clear, though: Alison has needed this level of help all her life. She is stable and not at high risk of dying in the next 6 months.

The Clinical Frailty Scale

In the current Coronavirus (COVID-19) crisis, doctors have to make difficult and quick decisions about who will benefit most from a referral to critical care. To help them, the National Institute for Health and Care Excellence (NICE) has just published guidance on identifying patients who need critical care during the COVID-19 pandemic, to ensure the best use of NHS resources. Their one-page critical care algorithm says that when a patient is admitted to hospital, NHS staff should calculate their score on the Clinical Frailty Scale (CSF). For those who are more frail (“for example, CFS score of 5 or more”), a decision should be made about whether critical care is appropriate.

The minimum CSF score is 1 (very fit) and the maximum is 9 (terminally ill). A score of 8 means “completely dependent, approaching the end of life”.

If Alison were to be admitted to hospital with a broken leg, she would have a CFS score of 7. There is no reason to think that Alison won’t live into a ripe old age, but the CSF has her firmly in the category of decline, one step away from approaching the end of life, and two steps away from dying.

Harry would score 6 on the CFS, and Janet would score 5. The text in red is taken directly from the scale itself.

It is completely obvious, therefore, that the Clinical Frailty Scale is not suitable for use with people who have learning disabilities (nor, indeed, for people with any other kind disabilities or conditions that affect their ability to do things independently). The problems with using the CFS as a decision making tool during the COVID-19 crisis have been brilliantly summarised by Chris Hatton (see his blog post). Following the outcry, NICE has added that when using the CFS, clinicians should take into account underlying health conditions and comorbidities. They have also quickly issued an update that acknowledges the CFS has not been validated for people with learning disabilities, and should not be used for this group.

People with learning disabilities and end of life decisions

These are difficult times, and clinicians need all the help and support they can get to make the right decisions. My concern is that many NHS staff, working under pressure and having to make impossibly difficult decisions for and with patients, will turn to the NICE guidance without full knowledge, consideration or understanding of the need for making reasonable adjustments.

There is also a real danger that when it comes to clinical decision making under pressure, and without the support and advocacy of families and carers that many people with learning disabilities need (let alone their need for help with communication and understanding), not all doctors will be free of unconscious bias. Medical decisions should be based on the likelihood that the patient will recover from COVID-19. It should not be based on an assessment of the worthiness and quality of someone’s their life. I really worry about this. There are too many sad precedents of people with learning disabilities not getting the care they need, and dying avoidable deaths, even at the best of times. Now, we are in the worst of times.

If Janet, Harry or Alison test positive for COVID-19 and need hospitalisation, the CSF should NOT (repeat: NOT) be used to assess their need of a critical care bed. For people with learning disabilities, it is not fit for purpose.

Janet, Harry and Alison are fictional. But there are more than a million people with learning disabilities in England who are real, and who could face this stark situation. Let’s speak up for them.