I’ve just been made a professor.

My son’s friend, who happened to be around last night when we raised a glass of bubbly to toast this new status, asked “What does it mean, to be a professor?”

Good question. I suppose a professor is someone who professes. I looked it up.

profess v.
1 to affirm or announce (something, such as faith); acknowledge
2 to claim, often insincerely or falsely

To be a professor, it seems, is to sit on the Chair you’ve been given and announce your faith. Hopefully not too insincerely or falsely. I am supposed to know stuff; to spread the word; to make sure others know it too; to make sure others care about it too.

When I gained my doctorate, just over a decade ago, it felt like an achievement.

I hadn’t really wanted to do a PhD. It seemed rather a lot of work, and with three very young children at home, was that really a sensible way to use my energy? And anyway, I wasn’t really interested in highbrow academic stuff unless it was relevant to the real world. I had only recently left the bedside and my heart was still very much (and remains today) with the experiences of patients and families.

But my inspirational supervisors, Professor Leopold Curfs and Professor (now Baroness) Sheila Hollins, talked me into it. “You’ll be able to achieve more once you can call yourself Doctor”, they claimed. “Get research funding, publish papers…”

So I worked into the evening hours, writing papers after my toddlers had gone to bed. There was a rather lovely ceremony at Maastricht University when I was handed my oversized PhD certificate – gaining your doctorate is properly celebrated in the Netherlands.

And my supervisors were right. I didn’t say anything new, but once I got my title, people started to take notice. It happened almost overnight.

With my PhD supervisors, Prof Baroness Sheila Hollins and Prof Dr Leopold Curfs (2007)

Gaining a professorship feels not so much an achievement, but a responsibility.

Professors, I imagine, will be taken even more notice of than Doctors. There are a lot of people who have lifted me up to my chair. People who have things to say that are just as important, but who may be believed less, because they don’t have the status and the power.

People who experience the issues that I have been talking and writing about: illness, death, dying, bereavement. People with intellectual disabilities. Families. Care staff. Service managers. Nurses.

I have been inspired and propelled forward by my colleagues in London, across the UK, across the world – not just the senior ones (like the wonderful professors who have been my role models) but also the more junior ones, the research assistants, our research advisors: the people asking the questions and the people helping to answer them.

Now that I have been given a Chair, it looks like it’s my job to announce the things we have found to be true, collectively, as a research community. That is indeed a responsibility and a privilege.

I intend to not just sit on it, but stand on it.

Some members of my research community. Academics, people with intellectual disabilities, care staff, nurses, families, service managers… I need them all!

Death and dying? “We like to talk to people we know and can trust”

Here is what happened when I asked a team of actors with intellectual disabilities to come up with a short play on the jolly topic of death, dying and bereavement.

“You see,” I explained to Louise who helps the actors develop their performances, “we have a big conference coming up. We are celebrating 20 years of the Palliative Care for People with Learning Disabilities Network, and we really want people with intellectual disabilities to have their voices heard. It shouldn’t just be the professionals talking. Please come and join us. Any kind of performance would do. Could we commission a twenty minute play?”

Louise said yes. Great idea. What a wonderful topic to explore with the Baked Bean Theatre Company, who excel in taking performances into healthcare settings and have not been afraid to tackle difficult topics. With the conference a good six months away, she was confident that they would be able to come up with something.

Programmes were publicised. The promised Baked Bean performance would certainly get bums on seats.

But with the conference date fast approaching and all seats sold, Louise dropped her bombshell.

“Sorry,” she said. “The guys don’t want to come.”

This was putting it mildly.

But all was not lost. Instead, the group agreed to produce a video explaining why it was so difficult for them to talk about death and dying.

So on the day of the conference (13th June 2018, London) there was Louise, presenting Baked Bean’s A short film about death and dying to a large and captive audience of doctors, nurses, social workers, home managers, support workers and lots of others involved in supporting people with intellectual disabilities at the end of life. Plus a handful of people with intellectual disabilities who did come.

The Baked Bean actors on “A short film about death and dying”

When asked what they think about the topic of death, Mandy is most unambiguous in explaining their absence.

“NO!! I don’t like it!” she shouts, flourishing this statement with a few expressions that a dignified academic like me probably shouldn’t repeat in her blog.

The thing is, watching this film, it is difficult to escape the conclusion that a lot of people with intellectual disabilities do need to talk about dying. Louise explained that it certainly showed up an unmet need. The actors speak movingly about their own bereavements and the effect death has on people with intellectual disabilities.

We all understood that this group of actors felt too vulnerable to address the issue of death and dying on stage. It would be useful, though, to know what they think would help to cope with death and loss, so I’m glad they were able to talk about this on camera.

John suggests that a counselling group might help.

“Because there may be other people there who are in the same boat as them.”

Ramatu says, “People can be in your face. It makes you a little bit frustrated when there’s people hanging around you, and you just want to be alone.” She explains that it’s better to speak to someone that you really know, and not just to anybody. Someone who will listen to her and make her feel better about heryself.

“Then you are around people that love you and care for you.”

“Some people are referred to psychiatry,” says Gary. “But at the end of the day they are just paid to dig deep and find out more about your life. And if they are a total stranger, you don’t want to open up to another total stranger.”

In fact, Gary has quite a lot to say. He was my co-researcher for many years, so perhaps he is better prepared than his peers to articulate his thoughts on the topic of death and loss.

“A lot of people with disabilities don’t see their family regularly. So they have to rely on people coming in to see them. Which is kind of hard,” he adds thoughtfully, “if they’re changing all the time. Because you get to know one lot of carers, or support staff as some people call them. And times move on in that person’s life, or something’s happened, and they’ve had to leave and are replaced by someone new. Which upsets the apple cart a bit. So the person with a disability is unsure, they’ve got to go back to basics and start all over again…If I had more regular staff, I’d find it easier to sit that person down and talk to them.”

John sums it all up.

“In conclusion: We like to talk to people we know and can trust.”

Delegates at the PCPLD Network Conference applaud the film (London, 13th June 2018)

The audience was gripped.

The feedback was unequivocal, with a 10 out of 10 from almost everyone. Fantastic! Brilliant! Powerful! Insightful!

“Loved that they were heard saying ‘it’s too hard’, how this was shown with humour, but could see their pain and diverse thoughts,” one delegate wrote on the feedback form.

Another commented: “I learnt of the vulnerability of people with learning disabilities and how hard it might be to find someone to help with dying or bereavement.”

And another:

“Surprisingly, incredibly important. I thought I knew!”

So did I. When you have my kind of job, it’s easy to forget that not everyone talks about death and funerals over dinner, as we do in my house. I often talk with people with intellectual disabilities about dying, so it’s good to be reminded how very difficult this can be.

A lot of people said they would love to use the film for teaching. So I asked Baked Bean Theatre Company whether they could put it on YouTube. They did. Here is the link.

Enjoy, share, and most of all, take note.

Learning from the Learning Disability Mortality Review

One evening in 2007, I was watching the BBC evening news when Martin’s story broke.

Martin was 46 and had suffered a stroke. He had spent 26 days in hospital without food, which left him so weak that he died. Martin also had Down syndrome and severe intellectual disabilities. He was one of six people with intellectual disabilities who had died in hospital and who featured in Mencap’s Death by Indifference report. It claimed that people with intellectual disabilities are at risk of early death because of institutional discrimination in hospitals.

The recommendations? Make sure that hospital staff:

  • Understand about intellectual disabilities.
  • Involve families.
  • Understand the law around capacity and consent to treatment.

It was hardly rocket science.

Fast-forward eleven years.

Last week I was watching the BBC evening news when the story broke of several people with intellectual disabilities who had died too early because of healthcare failings. Their stories had been unearthed by the Learning Disability Mortality Review (LeDeR) Programme, who have just published their annual report.

The recommendations? Make sure that hospital staff:

  • Understand about intellectual disabilities.
  • Work together with other agencies (including families).
  • Understand the law around capacity and consent to treatment.

Spot the difference.

I can’t, and neither could the authors of the report.

“Most of the learning from mortality reviews presented in this annual report,” they write, “echoes that of previous reports of deaths of people with learning disabilities, with the same issues repeatedly identified as problematic over the past decade or so.”

There was the Independent Inquiry in 2008, led by Sir Jonathan Michael, who was shocked to discover that the experiences of Martin’s family were “by no means isolated, despite a clear framework of legislation against discrimination”. His report, Healthcare for All, made a string of recommendations.

You guessed it:

  • Make sure staff have mandatory training in intellectual disabilities.
  • Provide reasonable adjustments.
  • Work with families.

The Michael report also recommended a Confidential Inquiry into Premature Deaths of People with Learning Disabilities. This duly happened. It lasted 3 years, investigated 247 deaths of people with intellectual disabilities, and published the final report in 2013.

Lo and behold! People with intellectual disabilities were at risk of early death because of healthcare failings.

The recommendations?

  • Identify people with intellectual disabilities within the healthcare system.
  • Provide reasonable adjustments.
  • Ensure staff understand the law around capacity and consent.

The Learning Disability Mortality Review Programme is important for wide-ranging reasons, from the humanitarian to the economic.

It collates and shares anonymised information about the deaths of people with intellectual disabilities in England, so that common themes can be identified, and learning points can be turned into policy and practice improvements. This has been done effectively in a number of states in the USA, where themes picked up at mortality reviews for people with intellectual disabilities have led to further questions and investigations, and crucially, to action.

For example…

Compared with the general population, why were people with intellectual disabilities 30 times more likely to die from aspiration pneumonia?

(The answers are interesting. They found, for example, that 1 in 5 people who died from pneumonia had received dental work or were sedated in the few weeks before the death; or they aspirated during seizures; or they ate quickly or stole food. If you know this, you can make sure the staff knows it too, so they can raise alarm bells if someone who recently had their tooth extracted under sedation suddenly develops a high temperature).

Another one. Why did so many people with intellectual disabilities die following an accident, and in particular following a fall?

And: Why did relatively few people with intellectual disabilities access hospice services?

(I learnt all this from an interesting presentation recommended in the LeDeR report, which you can watch here on YouTube.)

I would hope that these are the kind of issues a mortality review picks up. And indeed it does. The CIPOLD report noted the low rates of access to specialist palliative care services. The latest LeDeR annual report notes the very high rates of deaths from pneumonia.

In 2018, I want to read what the plans are to address these things. Preferably with time scales and funding plans.

What I do NOT want to read in 2018 is that healthcare staff were unaware of the fact that they needed to make “reasonable adjustments” to the care of a person with intellectual disabilities. Or that there were no capacity assessments. Or that services failed to work together, and failed to listen to families.

What I want to know is this…

Given the recommendations in 2007, 2008, 2013, etc etc, that services should work together, how can it happen in this day and age that someone with intellectual disabilities dies following possible urinary sepsis, having been readmitted to hospital after being sent home with a catheter, where his care staff knew nothing about catheter care?

Perhaps these questions are much harder than rocket science, after all.

Euthanasia, intellectual disabilities and autism

Here are two stories that have kept me awake at night.

A woman with mild intellectual disabilities couldn’t live with her symptoms of tinnitus.
A man with autism couldn’t live with his symptoms of – well, autism.
They lived in the Netherlands. They asked for euthanasia. Their request was granted. They died.


The woman with tinnitus was in her sixties and had (so her doctors said) “limited coping abilities”. She had been plagued by all sorts of different and terrible noises for over a decade. She had gone through many treatments – including a number of wrong ones – but she was not keen on them and often wanted to abandon them, and the people who treated her had not encouraged her to try and persevere.

She talked about euthanasia with her GP, but he didn’t want to meet her request, so she registered with the End-of-Life Clinic (set up in 2012 to help people whose own doctors, for whatever reason, were unable to go down the euthanasia road with them). A doctor and nurse from the clinic went to see her at home. They could see immediately that the woman was indeed suffering terribly from the slightest noise. Even water being boiled in a kettle was too much.

The doctor tried to explain to the woman that there are many people with tinnitus, and that most of them can manage to cope with it. But the patient, “with her primitive thinking abilities” (not my words – I’m quoting the report of the Euthanasia Review Committee), was focused solely on eliminating the tinnitus completely. Once she realised “I will never get rid of it”, her suffering became unbearable and hopeless to her, and she was then only focused on euthanasia.

According to the rules, the doctor asked an independent consultant for his opinion, who wasn’t sure whether the situation was without hope. A second independent consultant was found, who visited two weeks later. The second consultant agreed with the doctor that they had run out of options. The woman would not cooperate with any further treatments. The doctors worried that she might kill herself.

A week after the second consultant’s visit, the woman was given a lethal injection.


The man with the autistic spectrum disorder was in his thirties. He did not have intellectual disabilities but Asperger’s Syndrome. His is a sad story. He had endured neglect and abuse in childhood and suffered severe mental health problem.

What was the nature of the unbearable suffering that led the doctors to agree to his euthanasia request? According to the Dutch rules, the suffering must be caused by a medical condition. This has been interpreted widely, and has included psychiatric conditions (from which this man clearly suffered). But does it include life-long disability? Does it include autism?

I would like to think that the answer is an emphatic NO, but this is how the man’s ‘unbearable suffering’ is summarised in the report:

“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. He could react to things in a spontaneous and intense, sometimes extreme, manner. This often led to problems. However, the patient could not learn from these experiences. He was frustrated by his ‘forbidden’ feelings, such as longing for sexual intimacy. He suffered from his continuous yearning for meaningful relationships and his repeated frustrations in this area, because of his inability to deal adequately with closeness and social contacts.”

The psychiatrist thought that the patient’s suffering was unbearable and with no prospect of improvement, caused by an autism spectrum disorder, and concluded that his euthanasia wish should be processed.

Rather puzzlingly, the report added that cure for his condition was “no longer possible”, and that “treatment was purely palliative in nature”.

(I am trying, and failing, to see what palliative care for an autism spectrum disorder looks like.)

Euthanasia in the Netherlands

The Dutch are admirably straightforward about euthanasia. No euphemisms for them, no nice words like a Dignity in Dying Law. Their law does what it says on the tin: Termination of Life on Request and Assisted Suicide Act.

They are also admirably transparent about the practice of euthanasia. These two case reports were taken from the website of the Euthanasia Review Committee to which doctors must report every single case of euthanasia or assisted suicide (after the event). Each case report is reviewed; an annual report is written; and a selection of cases is put onto that website. In Dutch only, I’m afraid, so most of you won’t be able to read them – but I could.

I discovered a search box on their page of case reports. There were 416 of them, starting in 2012. I typed in variations on the words for “intellectual disabilities” and “autism”. Nine cases popped up. Nine people who had intellectual disabilities, or autism, or both; who had asked for euthanasia; and whose request had been granted. The reports describe why their suffering was unbearable, why it was “without prospect of improvement”, when and how they had asked for euthanasia, and how their request had been assessed by doctors. Was it a voluntary request? Was it well-considered? All these are criteria that must be met.

I translated these nine case reports into English and gathered three colleagues from the Netherlands and the UK. We read and discussed the case reports. We looked carefully at how Dutch doctors applied the criteria for euthanasia to people with intellectual disabilities and people with autism spectrum disorders.

Then we wrote a paper about what we found, which has just been published in the journal BMC Medical Ethics.

Having spent the past two years scrutinising the Dutch euthanasia system, and translating the reports of the Euthanasia Review Committees for the benefit of my UK colleagues, there is a lot I can say about euthanasia. Indeed I have – no-one in my circle of family, friends and colleagues has escaped the euthanasia debate. At my book group, I couldn’t help myself saying the E-word; the novel we were discussing was left behind as emotions ran high.

It’s a riskier conversation topic even than Brexit. At least with Brexit, most of the people I know are on the same side of the fence. Not so with euthanasia. People tend to have a strong opinion, which they hold on to with passion. Before you know it, you’re caught up in a campaign rather than a clear-headed discussion about the issues. I can understand both sides of the campaign. Branding pro-euthanasia campaigners as evil murderers and anti-euthanasia campaigners as evil torturers doesn’t help anyone. No-one involved in these complex situation is in the business of either torturing or murdering.

There is absolutely no doubt in my mind that the woman with tinnitus and the man with autism suffered terribly. Unbearably, even. There is also no doubt in my mind that the doctors who gave them euthanasia did so out of true compassion and a desire to do the best for their patients. We all want what is best. Individual stories of people who are seeking help to die are almost always unbearably sad and difficult. Who’d be in their shoes?

But I cannot help feeling deeply uneasy about these cases.

Because in order to agree to someone’s euthanasia request, you have to agree that the person’s suffering is terrible enough, and that it can never improve. You have to agree that for that person, being dead is better than being alive.

Of course there is only one person who can truly judge this, and that is the person him- or herself. But if someone says she wants to die, she may have a right to ask for help, but do we have a duty to give it? As a society, we agree that self-determination and autonomy is not limitless, and that there must be adequate protection for those who are vulnerable. That’s why we do not stock euthanasia drugs on the supermarket shelves. That’s why there are laws, and attempts within those laws to protect vulnerable people.

Having scrutinised the nine Dutch cases, I am not convinced that vulnerable people are adequately protected.

I hope you will read our paper, so you can draw your own conclusions and join the debate.


Our paper on euthanasia, intellectual disability and autism spectrum disorder
Woman with tinnitus (2015)
Man with autism (2014)
English version of the Euthanasia Review Committee website

Sabine is afraid of dying

TV deaths

My children can, by now, accurately predict what is coming, every time someone dies in a TV drama. Oh no, not another ridiculous death! I will say, half-amused and half-despairing. This is NOT how people die in real life!

On TV, there will be a few profoundly meaningful last words, spoken with urgency. Look after your mother! I’m sorry for what I did! The killer was Mr… (You never quite catch exactly who the killer was.) Then a bit of a gasp, and the person falls back onto the pillow / slackens in someone’s arms. Dead. There may be a bit of agonising pain thrown in, for effect.

On TV, people go from being fully aware and alive to being fully dead in a matter of seconds. Minutes at most – and that’s stretching it, usually because there is quite a lot of meaningful conversation or painful moaning or heroic resuscitation effort to fit in.

Real deaths

In real life, the space between any last words (meaningful or otherwise) and death is usually hours, days, weeks even. Normal people dying normal deaths just sleep more and more, then slip into semi-consciousness, then leave gaps between breaths, and at some point they simply don’t breathe in again.

TV deaths are, by their very nature, dramatic. Real deaths are usually gentle. They are rarely painful or dramatic.

This is beautifully described in With the end in mind: Dying, death and wisdom in an age of denial, an extraordinary book by Kathryn Mannix. She is a pioneering palliative care consultant, and she is on a mission to dispel our fear and ignorance about dying. She does this by telling the stories of the lives and deaths of dozens of her patients.

Here is Sabine. She is nearly eighty.

So starts the first story. And here, indeed, is Sabine, right here in my kitchen, joining me. She drinks her tea black and derides the ‘You call that coffee?’ offered by the beverages trolley. She has a French accent so dense it drapes her speech like an acoustic fog.

I am hooked. This book could be a novel, it is so beautifully written. But it is not a novel. All of it is true, and I recognise all these people. They have been my patients, my neighbours, my friends, my family.

Sabine, for example, is keeping a secret. “She, who wears her Resistance Medal and who withstood the terror of war, is afraid. She knows that widespread bowel cancer has reached her liver and is killing her.”

What follows is an account of how “the leader” at the hospice stuns the author, at the time a young and inexperienced doctor, by explaining to Sabine (and to us) in extraordinary detail what normal dying looks like, and what Sabine can expect .

‘The important thing to notice is that it’s not the same as falling asleep,’ he says. ‘In fact, if you’re well enough to feel you need a nap, then you are well enough to wake up again afterwards. Becoming unconscious doesn’t feel like falling asleep. You won’t even notice it happening.’

He stops and looks at her. She looks at him. I stare at both of them. I think my mouth might be open, and I may even be leaking from my eyes. There is a long silence. Her shoulders relax and she settles against her pillows. She closes her eyes and gives a deep, long sigh, then raises his hand, held in both of hers, shakes it like shaking dice, and gazes at him as she says, simply, ‘Thank you.’ She closes her eyes. We are, it seems, dismissed.

I am also leaking from my eyes. Family, food and sleep all have to be put on hold as more and more people – whole families – keep tumbling out of the pages, joining me and my coffee, and as the night darkens, my wine.

We are no longer familiar with ordinary dying.

Few people have seen the process of dying, the gradual fading, the final breaths. Those of us working in palliative care, who have had the privilege of being alongside hundreds – if not thousands – of dying people, know that there is a pattern that is remarkably similar for most people. This predictable, and usually fairly comfortable, process has traditionally been known and understood by families, who used to watch grandparents, aunts, parents and partners die among them, often in their own beds. But in recent times, deaths have been banished to hospitals, unseen, unknown and frightening.

People with learning disabilities die ordinary deaths, too.

At the end of a talk I gave at a conference last year, someone raised her hand. Is there anything particular we should know about the final days and hours of someone with profound learning disabilities? she wanted to know. I can’t remember what I said – probably something about the need to support the family and care givers, the importance of acknowledging relationships, the recognition of the place of the dying person in everyone’s life, the magnitude of the hole they will leave behind. The questioner looked taken aback.

Is that not what you were expecting to hear? I asked her. She explained that she thought I’d say that someone with learning disabilities might need more pain killers than you or me.

Now it was my turn to be taken aback. I explained that on the contrary, dying is dying! At the end of life, the process of gradually slipping into sleepiness, then unconsciousness, is no different for people with learning disabilities. At the end of life, in the process of dying, equality reigns. It is the social circumstances, the relationships, the support on offer, the access to necessary pain medication (usually no more, but also no less than you or I might need) that can make dying unequal.

Kathryn Mannix’ book is a gift.

I urge you to buy, borrow or beg a copy. It will make you more prepared for dying and more prepared for living. It shows us how ordinary people die, and how we can all embrace life because of it. Because we are all just ordinary people. And that includes people with learning disabilities.

It may not make for gripping TV. But it is rather reassuring.

A life-and-death decision

Try to imagine this, everyone (including the women). You are 34 years old and you have just been diagnosed with testicular cancer. Your whole family is shocked. You are in the prime of your life, the decades should be stretching ahead of you. Perhaps it could have been picked up a year ago, when you went to the doctor with swollen testicles, which were not really investigated properly. Neither were your complaints of pain. But now here you are, with a cancer that has spread. What to do?

Chances are that your doctors will recommend chemotherapy. It’s not to be taken lightly, going through chemotherapy is usually very tough indeed, and good outcomes are never guaranteed. You are feeling weak and rotten, so perhaps you decide that you really don’t want any treatment. But my guess is that you would. You would try.

Wouldn’t you?

I cannot think of many men in the prime of their lives who would not be offered this option by their doctors, even if the chances of success were slim. And the thing is, testicular cancer (even cancer that has spread) is one of the most treatable cancers, so the chances of success are not that slim.

So why was Ian Shaw told, soon after his cancer diagnosis in 2016, that palliative care was the best option? Why was he sent home to die? Why did the doctors not even discuss the (admittedly very challenging) option of chemotherapy, but instead told the family that it would be too much, the cancer had gone too far?

Ian has severe learning disabilities, autism and epilepsy. It is difficult to escape the suspicion that this has somehow influenced the doctors’ decision, although the hospital denies it, stating that “Mr Shaw‘s learning difficulties were not a factor in the decision to move to a palliative care pathway.”

I remember watching this story on the BBC news in July. There he was, this very weak young man, bedbound, with his tearful parents by his side. He was expected to die within months. I remember thinking, “Oh no, not again. Another person with learning disabilities falling through the net. This doesn’t seem right.”

I didn’t do anything. Perhaps I didn’t know the full story, I thought. Perhaps the doctors knew something I didn’t.

Fortunately, Dr Justin Wilson, who also watched the BBC news report, did take action. He is a leading psychiatrist in learning disabilities and knows a thing or two about cancer. He got in touch with the family and advised them to have a second opinion, so they took him to the Royal Marsden Hospital. Last night, the BBC news showed an update on the situation. There he was, this strong young man, five months after that initial report, responding well to chemotherapy. Ian hadn’t been expected to make Christmas, but now he is sitting in his wheelchair looking rather feisty.

Dr Wilson said, “My concern was that perhaps judgements were made about the quality of life that he has because of his severe learning disabilities and because of the physical impact of how the cancer has spread.”

He added, “I’m also clearly aware that providing cancer treatment for someone with the problems that Ian has is a real challenge. It is really difficult to give the best possible treatment to somebody in that situation, but my view is those challenges can be overcome.”

I couldn’t have put it any better myself.

I’m sure doctors and nurses all want the best for their patients. Nobody will have looked at Ian and thought, consciously, “What’s the point of this man’s life? Letting him slip away is the kindest thing, surely.”

But there are undoubtedly unconscious biases, putting people with learning disabilities at risk. Our study of patient safety issues, which involved investigations in six NHS hospitals, concluded:

“The most common safety issues were delays and omissions of care, in particular delays and omissions of basic nursing care (for example, unmet nutrition needs) and delays and omissions of medical treatment (for example, treatment not given because of perceived inability to cope with or consent to treatment or because of staff assumptions about the patient’s quality of life).” (p. xvi, Scientific Summary)

Similarly, the Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD) concluded that people with learning disabilities are at risk of under-treatment, and recommended that people should not be put on a palliative care pathway without sufficient investigations or because of assumptions about their quality of life.

I am a great fan of palliative care. Recognising that someone is terminally ill is important, so that proper end of life support can be given. Sometimes, a person’s difficulties in coping with something as horrible as cancer treatments really are “too much”. But weighing up the pros and cons is not something doctors should do on their own. It is an effort that needs a multidisciplinary team and must involve the family and carers – especially if the patient cannot speak for himself. The difficulties and extra effort involved in giving treatment must be considered in the light of possible outcomes.

Nobody says it will be easy. But surely the possibility of living many more years rather than dying before Christmas is an outcome worth pulling out the stops for?

For Ian Shaw, this has meant putting him under an anaesthetic for a short time whilst he is given his chemotherapy. Now that is what I call an excellent example of making Reasonable Adjustments. Ian’s access to cancer treatment should not depend on the BBC news picking up his story, but thank goodness.

A home for life…?

I visited Michelle last weekend.

I am somewhat ashamed to say that I hadn’t seen her since her 60th birthday party, which is well over a year ago. My visit was prompted by setting up this website, because I wanted to ask Michelle whether it’s OK to put her photo on my biography page.

Oh, and how about this one? It’s my favourite. Could I publish that too?

Michelle on her 60th birthday

Michelle was the first long-term friend I made in England.

She was my housemate for almost two years. I had come to the L’Arche community from my family home (via a few years in a student flat) in the Netherlands. Michelle had come to the L’Arche community from a huge institution for the “mentally retarded”, where she had lived from early childhood to young adulthood. I was 21 and she was 29.

The crucial difference between “looking after” people and “being with” people became obvious when I got ill. Suddenly it was me who needed looking after, and it was Michelle who made sure this happened, bringing me hot drinks in the bedroom we shared. We had our disagreements, but being thrown together like that creates a bond that lasts a lifetime.

Michelle serves me my birthday cake, a few weeks after I moved into her home in 1985

So, why hadn’t I seen my friend for so long?

I had followed her trials and tribulations after I moved out of L’Arche. I had visited her in hospital when she developed problems with her brain a few years ago, and we didn’t think she’d make it.

(She did make it. She is made of strong stuff.)

But last year, Michelle moved to a nursing home. It upset me to think of her leaving her home, and I couldn’t face seeing her in what I imagined was an impersonal place with staff who don’t know her.

When people moved out of the large institutions in the 1980s, into small homes in ordinary streets in the community, we told ourselves (and we told them!) that they had found a true home at last.

A home for life.

That was certainly the case in L’Arche, where we tried to create family-like relationships in homes that were warm, welcoming, and above all, ordinary. The house I shared with Michelle was, in my day, home to nine people, four of whom had intellectual disabilities.

But 30 years later, the world is a very different place, and there have been many changes. Along came personal budgets and an emphasis on “choice”. Group living was out; independent living was in.

Many of these changes have been positive, giving people with intellectual disabilities (including many living in L’Arche) an opportunity to live in a place of their own, shared with a friend perhaps. Some people have longed for this. Giving people more choice, more freedom and more control over their lives (including who they live with) is a good thing. It is no longer acceptable for anyone to have to share their bedroom with a stranger from Holland.

Those remaining in larger homes (like Michelle, who never moved out) no longer share their home with assistants in the way we did back then. The stranger from Holland would, nowadays, be like a guest, doing what looks much more like “shift working”. On paper, people like Michelle were now “living independently”, although she still shared her home with three other people with intellectual disabilities. All independent together in the same house.

But here is the problem. All over the UK, there are homes like this, where “independent” people are getting older, needing more care, unable to manage the stairs.

What happens when people reach their twilight years, their sunset?

They live in homes not suited to the needs of old age.

(Picture Victorian London houses. There are no bathrooms downstairs. Nothing is on the same level. There are steps everywhere.)

Their personal budget doesn’t stretch to getting help beyond the basics. Michelle found herself confined to a downstairs room where she sat with just one assistant for much of the time, because she couldn’t get out. She often needed help at night, but there was no “waking staff”.

People racked their brains. Could L’Arche offer her a more suitable house somewhere, with good wheelchair access? Would the local authority increase her funding so that she could be properly supported throughout the day and night?

The answer to both questions was no. The local authority decided that it would be better (read: cheaper) if Michelle moved to a nursing home. So, eventually, and to my great distress, off she went. The only concession was that she was given some extra funding to enable her to visit L’Arche every week, so she could stay in touch with her friends.

I knocked on the door of her new home with some trepidation.

First impressions were not promising. There she was, seated among six other people in wheelchairs in a large and bare lino-floored room, with the oversized TV pumping out jolly music. Several more people milled about in the entrance hall, keeping an eye in case something interesting was happening. (A visitor like me, my piano accordion flung over my shoulder, was certainly interesting.)

Michelle had aged so much in a year that I barely recognised her.

But there is a positive end to this story.

She greeted me with a huge grin. As I went round introducing myself to the people in the room and explaining to them that I was Michelle’s friend, it became obvious that they, too, were her friends. I could see very few members of staff, but those who were there were nothing short of lovely.

We were soon joined by two other friends from L’Arche, who had become part of Michelle’s circle of advocates. We had tea; we looked at photos; we sang Michelle’s favourite songs, courtesy of that accordion (Michelle Ma Belle! Edelweiss! You Are My Sunshine!).

Michelle seemed content. She seemed – dare I say – at home.

Her friend and advocate explained how heartbreaking it had been when Michelle had to move out of the house that had been her home for over 30 years, away from L’Arche and all her friends – but everyone had been pleasantly surprised by how well she had settled. Michelle is an extrovert: she gets her energy from being with people.

Could it be that being surrounded by so many other people, being able to wheel herself to the glass-fronted entrance and keeping an eye on things, is actually better for her than the relative isolation she was forced into by the growing limitations of old age?

Another thought suddenly struck me. Could it be that this place, with its echoing Spartan spaces shared with plenty of other people, actually feels like home, perhaps even comfortingly so, to someone who has spent the first two decades of her life in a large and impersonal institution?

I am reminded of some of the most inspirational nursing homes for people with dementia in the Netherlands, where the décor and even the staff outfits match those of 60 years ago, to make the residents feel that they belong there.

I am seriously challenged by the idea that a woman with Down syndrome who is reaching the end of her life would rather be in a semi-institutional setting than in a cosy home.

Yet if we are to provide truly person-centred support, we need to try and see the world from the other person’s perspective.

Michelle cannot tell us what she wants, but her advocates, who know her well, are clear that she is happy enough in a place where I would absolutely hate to live.

I am not advocating a return to institutional life for people with intellectual disabilities who reach their twilight years. But I am clear that we need to keep an open mind when trying to determine what people’s needs and wishes are, especially people who do not have the ability to tell us.

Dying at home?

I am also reminded of my research into the perspectives of people with intellectual disabilities who were dying of cancer, about a decade ago now. I was very surprised to find that “being cared for at home” was not always the preferred option. Some people did not feel safe at home. Others found that their extensive physical needs simply couldn’t be met at home. One woman was clearly confused by the fact that she was both ill and at home: shouldn’t ill people be in hospital?

Three key features of a good place of care were:

  • being in safe surroundings with familiar people
  • being free of pain and anxiety
  • having carers who were well supported

Feeling safe and maintaining bonds with familiar people is probably easiest at home, but it could also be achieved elsewhere.

(If you are interested in the details, I have summarised those findings here.)

L’Arche’s inability to offer Michelle a home during her final years reflects a wider phenomenon. People with intellectual disabilities are ageing.

There is a time bomb ticking away within intellectual disability services.

Many of the homes that were so optimistically set up when the institutions closed in the 1980s and 1990s were designed to help people live independent lives, but they are often utterly unsuited to supporting an elderly population. They are not “future-proof”. The drive towards “independent living” and the slow but sustained cuts in social care funding are also leading to problems when there is a need for increased support.

Where, then, can people with intellectual disabilities call “home” during their final years?

Thankfully, Michelle’s team was able to take some time over finding a suitable nursing home that is close enough to her old home for regular visits.  Michelle gets the support she needs to maintain bonds with old friends (often a huge challenge for people who are dependent on others, and on funding, to organise their social life). She is also making new friends.

So I am relieved to find that the nursing home does indeed seem suitable for her. But all too often, there are emergencies. All too often, older people with intellectual disabilities who end up in hospital find that they cannot go back to their old home, because it can no longer accommodate their needs (or perhaps the staff lack the confidence to support those who are ageing and ill – but that’s another story). They are stuck with nowhere to go.

In order to address these issues, may I suggest The Four F’s:

Future proofing people’s homes


Forward thinking


Now… did Michelle mind having her photo on the internet?

I can’t be totally sure, because the internet is too difficult a concept for someone raised in the pre-digital age. But when I showed her that 60th birthday photo, her eyes lit up with delight: “Me!!”

I take that as a yes. Michelle has always liked being the centre of attention. She even bustled her way up to the altar during our wedding ceremony to join the witnesses, not wanting to miss out on the limelight perhaps.

I hope that she won’t mind me telling you her story.

In my research, I have often had difficulty explaining the need for anonymity to people with intellectual disabilities. Some have protested strongly. People like Michelle have often been anonymous all their lives, unseen, unheard. They deserve their very own place in the limelight.

As her advocate pointed out to me, Michelle has always set great store by “learning”. If she could have chosen a career, she may well have wanted to be a teacher. Through me sharing a bit of her story with you, perhaps she can be a teacher indeed.

So, for good measure, let me throw in this lovely photograph, from way back when I first knew her.

Michelle in 1985

How to be British

My first blog post was going to be about something profound and meaningful and relevant to my job. An essay on death, dying and intellectual disability, perhaps. Something suitably impressive. But I’m afraid I am going to have to introduce the B-word instead.

No, not Bereavement.
Brexit. (Or perhaps that’s the same thing.)

Yesterday, more than 32 years after first arriving in the UK, I became a fully-fledged British citizen.

Along with 20 other brand-new Brits, I promised to be faithful to Her Majesty the Queen. Lambeth Council generously threw in the gift of a free pen.

I’ve been married to a British citizen for 23 years and raised three British children, but apart from not being allowed to vote in general elections, it has never bothered me that I couldn’t call myself British. Those of you who have moved counties, countries or continents will know that the roots of your birthplace are never truly buried. I have always felt Dutch, and I have always seen that as an asset.

But when my son turned 18, we realised that it would be prudent for all three children to apply for a Dutch passport. The Dutch government is not keen on dual citizenship, and they keep changing the rules, so best to get this sorted before having a Dutch mum is no longer a passport to a Dutch passport. How lucky they were, I thought, to have two cultures and be part of two countries.

But hang on a minute. Aren’t I also part of two countries? Suddenly, being the only non-British person in my household felt a bit sad. I wanted to be British too! It was a positive choice – emotional, even.

(And expensive. Those Dutch passport applications came to around £150 each. Getting to the point of British citizenship has cost me more than ten times that amount. Thank goodness for free pens.)

Then Brexit happened.

Almost overnight, getting British citizenship no longer felt like an optional extra. I had never questioned my right to live in London, but all of a sudden, the future seemed somewhat shaky. What if I were to end up as an 85 year old widow with Alzheimer’s in need of nursing home care? Would I be sent back to Holland? I’m not dramatising things. In the toxic post-Brexit atmosphere, there have been enough worrying stories to make me feel acutely aware of the vulnerability of being an immigrant – something I had never felt before. Getting a British passport turned from a positive choice to a negative one. It was no longer a question of wanting a British passport, but of needing one.

The first challenge was passing my citizenship test.

Well, I thought, how hard can it be? You need to give the correct answer to at least 18 out of 24 multiple choice questions. Surely, I had lived here long enough to pass without too much effort? I merrily clicked on the online practice tests – and failed miserably.

Many of the questions were laughably easy.

Is Edinburgh the capital of England, Scotland, Wales or Northern Ireland?
Is Christmas Eve on 23, 24, 25 or 26 December?

But too many were beyond me.

Are there 10, 12, 15 or 20 national parks in England, Scotland and Wales?
Was the Emancipation Act signed in 1807, 1817, 1833 or 1837?
Who was made a Dame of the British Empire in the year 2000 – was it Mary Peters, Kelly Holmes, Ellen McArthur or Jayne Torvill?

I had no idea. Clearly, some study was required before I could gain the right to be British.

My friends, many of whom saw themselves as Very British and Very Well Educated, were incredulous when they, too, failed the practice tests. Their Oxford University degree had not prepared them sufficiently for Being British, as they could not tell me whether the famous satirical magazine “Punch” was published in the 1820s, 1840s, 1860s or 1880s; nor were they aware of the exact height of the London Eye (125 meters? 135? 140? 152? Every citizen should know!)

Luckily, there is a book with all the answers to these crucial questions. I studied it carefully and passed the test first time (you can take it as many times as you like, but at £50 a go, I was glad I didn’t fail). At the time, I would have been your perfect pub quiz partner – but I fear that a year later, I have forgotten most of the detail and am struggling once again to pass those online tests.

The next challenge was proving that I could speak English.

It looked like I’d have to sit an exam. Having written articles, books and a PhD was no help. The PhD was at a Dutch university, so although it was taught, written and defended in English, it didn’t count as evidence. But wait! How about my BSc degree? That was at a London university. Yes, that would get me to bypass the test requirement. I couldn’t find the certificate and had to pay to get a new one, but at least it did the trick.

Right, on to the Citizenship application form – about 80 pages long.

“Submit your Permanent Residence Card”.

Surely, as a EU citizen, I didn’t need such a thing? Don’t all EU citizens have the right to live in the UK? But no, it transpired that I did need to supply the card as evidence of my right to be here. Who knew? Another 80 pages of application form, another fee, another wait.

This was perhaps the part of the process that upset me most, because to obtain the right to Permanent Residence in the UK, the main requirement seemed to be Well Paid Work. The Home Office was not interested in my longstanding marriage to a Brit, nor in my British children, nor in the many years of doing low-paid work supporting people with learning disabilities. Instead, they wanted to know exactly how much I had earned in the past five years. How many days have I had off sick?

(Quite a few, as it happens. Breast cancer and all that. My poor hard-working GP had to write a letter listing all the dates I’ve been signed off sick, and why).

Also, could I please fill in this page, listing all the days I’ve been out of the UK in the past five years, and why? Thank goodness I’ve kept my old Filofaxes, so that I was able to inform the Home Office exactly on which date in 2012 I stayed Belgium overnight for a work seminar.

I have passed all these hurdles with quite a lot of effort, but without too much difficulty. But had I been a stay-at-home mum, or had I spent more than two out of the past five years in the Netherlands (to look after an ill mother, say), this would have been quite a different story. There have been news reports of Europeans in exactly those positions, people married to British citizens who had lived here for decades, who were sent letters by the Home Office telling them to prepare to leave the country after their application for permanent residence had been refused.

All this has made me feel very uncomfortable.

Why should someone staying at home to look after an ill husband or a disabled child be any less welcome in the UK than I am? Indeed, if I myself had physical or intellectual disabilities, how could I ever pass all these hurdles? Hm. Do I really want to be a full member of a country that no longer welcomes new citizens equally, but screens them for economic power, disregards family bonds, and seems unable to exercise compassionate flexibility?

But I filled in the forms, paid the eye-watering fees, sent in all the documents, and after months of waiting, I received my congratulatory Home Office letter.

All I had to do now was turn up at Lambeth Register Office for that promise.

It was actually quite nice. Forget the Home Office. Here in South London, I felt right at home. We were welcomed as new British citizens by the deputy mayor of Lambeth whose Portuguese accent was so strong that I had to concentrate on his speech – he had moved to England two decades after I did. The young woman whose job it was to look carefully at our mouths, in case anyone failed to utter the correct oath, was wearing a hijab.

Here was a room full of people from all over the world, looking exactly like folks on an average London street. I wondered what all the stories were that have led my fellow Londoners to their free New Citizen pen.

And I remembered again why this city is, after all, the very best place to live.

Oh, and in case you’re wondering, the correct answers are…

Edinburgh: capital of Scotland
Christmas Eve: 24 December
National parks: 15
Emancipation Act: 1833
Dame in 2000: Mary Peters
Punch magazine: 1840s
London Eye: 135 meters

Welcome to the UK.