Helping people with profound intellectual disabilities cope with bereavement

This blog post is reproduced (with permission) from an article I wrote for PMLD Link, a journal for those supporting people with profound and multiple disabilities. It is a special issue full of stories and articles about death and loss (Winter 2019, Vol 31 No 3 Issue 94).

The death of someone close to us is one of the hardest things we ever have to cope with.

We can never be really prepared, nor can we make the process of grieving quick or easy. It takes years to adjust to a world that doesn’t have the person we love in it. That world can never be the same again.

How much more difficult is this for someone with profound intellectual disabilities? Their world may be utterly shattered by the death of a parent, for example. It’s something most parents of people with disabilities will have thought and worried about for a long, long time. What will happen to him when I am no longer there?

The question is not only a practical one (Who will look after him, and will they do it properly, with love and care?) but also an emotional one (How will he cope with missing me?)

I will share some of the things I’ve learned over the past 35 years of living and working with people with intellectual disabilities, many of whom had to cope with significant bereavements; and of doing research into death, dying, bereavement and intellectual disabilities. I am going to tell you the real-life story of Carlina Pacelli (not her real name), who moved into a community-based home for six people with intellectual disabilities where I was the manager at the time.

Carlina, a woman in her 30s, had profound intellectual disabilities and was a wheelchair user. Until the move, she lived with her parents, who were getting increasingly frail and were struggling to support Carlina. This was a huge transition for the parents as well as Carlina. Her family was close and loving; her parents, brothers and aunts visited often, and she went to see her parents at their home every other week.

Helping Carlina to cope with her parents’ deaths

Five years after the move, Carlina’s father became gravely ill. We could not explain this to Carlina, as she did not understand words at all, and did not use them. The only way to ‘tell’ her was through experience, and through showing her. We took her to visit her father several times in hospital. When he died, the family felt unable to support Carlina, as they were coping with their own strong feelings of grief. How could we help her?

I have always found it quite helpful to think about the tasks of bereavement [1]. These tasks are in no specific order and each one may be revisited or repeated, depending on the needs of the person:

  1. Accept the reality of the loss

  2. Process the pain of grief

  3. Adjust to a world without the person who has died

  4. Find an enduring connection with the person who has died

How could Carlina be best helped to understand the bad news of her father’s death? It’s difficult to ‘accept the reality of the loss’ if you don’t know or understand what has happened. It was the first time someone in Carlina’s close family circle had died. Verbal explanations made no sense to her. Staff tried to talk about Dad with a sad facial expression, but Carlina, who was highly sociable and loved people talking to her, was mostly excited and pleased when they did so.

We took Carlina to the chapel of rest so she could see her father’s body in the coffin.

She was initially highly excited about this unusual outing, but when the initial excitement of the outing had subsided, she became very quiet, staring at him. She was helped to stand up from her wheelchair so she could touch her father’s body. She didn’t seem to understand and made it clear that she wanted to leave.

Funerals are important rituals where people with and without intellectual disabilities can share their grief. Even if someone is unable to understand what has happened, they are likely to pick up on atmosphere and emotion. There is nothing wrong, in my view, with sharing tears and distress – rather, the opposite is true! When I go to a funeral and feel sad, it helps me to see that other people are also sad.

Carlina had never been to a funeral before. Unfortunately (I thought), but perhaps understandably, the family not want Carlina to attend her father’s funeral, as they thought that she would not grasp what was happening. They worried that her excited noises at seeing so many familiar faces gathered in one place would upset the family. I tried to explain that we could support Carlina at the funeral so the family didn’t have to, but the family were adamant. In the end, we felt that we could not go against the family’s wishes at such an emotive time. With the family’s agreement Carlina attended the wake, held in the church the night before the funeral, with only immediate family present. She was very excitable at the start of the wake, but became subdued after ten minutes. The atmosphere in the church was quiet and sad.

Over the next few months, we helped her to visit her mother at least once a week.

At first, Carlina seemed surprised that her father’s armchair was empty and she seemed to be searching for him, trying to wheel her chair through the house. Staff also invited Carlina’s mother to visit regularly; these visits were different from before, as her mother would never have visited without her father.

As the weeks went by, Carlina became more withdrawn and often seemed lost in her own world. We think it took her about a year to work out that her life had changed.

When Carlina’s mother died three years later, exactly the same pattern was followed.

Carlina saw her mother’s body at the same chapel of rest; she attended the wake (but not the funeral); she visited her old family home, now empty, one last time before it was sold; and her brothers, rather than her mother, now made the Sunday afternoon visits to the residential home. Carlina was again withdrawn and subdued in mood for about a year. Grief has its own time table. We felt that this time, she was less excitable at the chapel of rest and at the wake, and seemed to grasp the sadness of the situation better.

I told this story in my book How to break bad news to people with intellectual disabilities.

Carlina’s parents died more than 20 years ago. Since then, Carlina has been to a lot of funerals, as many of her fellow residents and friends have died. Earlier this year, we were devastated by the death of Carlina’s housemate Carol, who moved in at the same time as her. They had lived together for 30 years.

I was sitting at Carol’s open coffin, which had been brought into the church the night before the funeral. Friends were coming and going, including people with intellectual disabilities. Some stayed for just a few seconds, others sat for a long time.

Carlina came in and this time, she seemed to understand immediately what this was about. She looked, she was quiet, she seemed sad. She stayed for longer than I had expected, then wheeled herself out.

I think that after all these decades of repeating the same patterns when somebody dies, she now understands death in a way that she couldn’t when her father died.

Explanations do not have to involve words.

The four tasks of mourning

1.      Accepting the reality of the loss

Carlina’s story illustrates how she was helped to understand the reality of her parents’ deaths, and later, of the deaths of her friends. Supporting her to visit her mother was a conscious effort to help Carlina see that her father was no longer there.

There were other ways in which we tried to help Carlina understand that Carol had died. We kept Carol’s empty bedroom open, with flowers and photos, for several weeks. Carlina would often wheel herself past that room, hesitate, have a look.

Carol’s room

I think it’s a good idea to try and find ways to let someone with profound intellectual disabilities see for themselves what has changed. Of course, you also need to take the person’s lead; if they indicate that they want to leave, then they should leave. Helping someone understand the reality of a death can take years, but it is important.

2.      Processing the pain of grief

I have found that many people try to protect or distract someone with intellectual disabilities from painful emotions. Perhaps this is because we worry that the feelings are overwhelming and will never stop. In my experience, however, most people (including people with intellectual disabilities) will find a balance between expressing distress and ‘getting on’ with life.

Both of these are important. You cannot be in deep distress all of the time, but similarly, you cannot be cheerful all of the time either. People are truly supported by knowing that their sadness is normal, and that it is allowed.

You can help by acknowledging their feelings and by sharing your own emotions about the loss (it’s OK to cry!). Finding ways to remember the person who has died, with all the sadness that may evoke, is also helpful. You could use photos, storytelling, or anything that reminds them of the person – favourite objects, items of clothing, music they liked… anything!

3.      Adjust to a world without the person who has died

This is hard. And the bigger the changes, the harder it is to adjust. Most parents will have thought about this (Carlina’s parents did). If the death of a parent happens at the same time as a move into another home, there are so many changes and losses to cope with at the same time. Sometimes this is unavoidable, but it really is worth planning for change.

If the change is unplanned, then try and see if people’s routines or familiar surroundings can be maintained at all. Would it be possible, for example, for the person to stay in the parental home, at least for a while, perhaps with carers moving in? It’s also worth planning for difficult times, such as birthdays and Christmas.

4.      Find an enduring connection with the person who has died

People with profound intellectual disabilities need help in accessing memories. I’ve heard some inspirational stories and innovative ideas of helping people with this.

Turning a dead father’s favourite jumper (which still smells of him) into a cushion; the son often cuddles it, and seems comforted by it.

Or how about a group of proactive parents who are audio-recording their voices so that this can be used to ‘talk’ about them after they have died? I think that’s brilliant.

In fact I wish my own mother, who died five years ago, had done the same… I would love to hear her sing the songs of my childhood. Initially, it would have made me sob. But now it would make me smile. Our connections with the people we love do indeed endure beyond death.

And when it comes to grief, really, we all need the same things.

© When Dad Died

Helpful resources

[1] This is a concept used in bereavement counselling. It comes from J. Worden (2009) Grief counselling and grief therapy (4th edition). London: Routledge

End of life care planning and people with learning disabilities (PART 3: a guide)

What does good end of life care planning look like?

What should you talk about and when should you talk about it? Big questions. As I have discussed in my previous blogs, it’s hard enough for any of us to plan for our time of declining health and dying. Much harder, still, for people with learning disabilities.

There is a danger that we talk about it at an unhelpful time or in an unhelpful way. This danger is greatest if there is a tick-box approach to “End Of Life Care Planning”, where the focus is on completed paperwork rather than on communication – something the Royal College of Physicians and other national organisations have been warning against for years.

Nightmare scenario 1

(fictional but based on real life, alas)

George, a healthy 28 year old, moves out of the family home and into supported living (a group home) for the first time. He has autism and moderate learning disabilities. In his first week there, the manager sits down with him and his mother and asks them, pen poised, What are George’s wishes for end of life care? Would he like to die here, or at home, or in a hospice? And would he like to be resuscitated, yes or no?” The question comes out of the blue. George is terrified. His mother is deeply distressed.

But the other danger is that we don’t talk about it at all.

Nightmare scenario 2

(also fictional; also based on real life)

Fred, an increasingly frail 58 year old with severe learning disabilities, also lives in a group home. He is close to his sisters, who visit often. Over the past year, he has had several chest infections. Each time he recovers, but is weaker and less able to do the things he likes. He can no longer feed himself or walk independently, and his seizures have also increased. His sisters are convinced that he is in considerable pain but the care staff are reluctant to give pain medication, as they feel it makes him drowsy. The care staff want him to maintain his hard-won independence, so they encourage him to keep trying to walk. When Fred goes into hospital with yet another chest infection, the home manager says they cannot have him back until he is better; currently, his physical needs are too great. There is nowhere else to discharge him to, so Fred stays in hospital whilst his sisters try and find a suitable nursing home. He dies in hospital two weeks later, alone and probably terrified. His sisters are deeply distressed but not surprised. His care staff are shocked – they hadn’t expected Fred to die.

So, how should we approach end of life care planning?

Let me talk you through my top tips.

I have to stress that I haven’t tested my tips or asked what families, carers and people with learning disabilities think about them. (If you’d like to do this, I would be delighted!) This blog is based on what I’ve learned from my clinical and research experience, and from reading other people’s stories, guidelines and tips. First of all:

What is end of life care planning?

In a nutshell, it is planning ahead for the last year, months or weeks of life so that there are as few surprises as possible; everyone is prepared for what might happen; and the care someone gets is based on their values and preferences.

I’m calling it end of life care planning because then everyone knows what we’re talking about, but you may also hear the term Advance Care Planning. This is a wider term and includes three things (I’m talking about the UK here – it might be different if you live elsewhere):

  1. What you want to happen. These are statements about the person’s goals of care, and their personal values. It could be about medical treatment (“I want to be fed by tube if I can’t swallow anymore”) or about place of care (“I don’t want to go into hospital”) or about social aspects of care (“I only drink coffee out of my red mug” and “George is my best friend and I want him to visit me”). These can be recorded, or they can just be discussed. They are NOT legally binding – although any decisions (including best interest decisions) should take them into account.
  2. What you don’t want to happen. This is also known as Advance Decision to Refuse Treatment (ADRT). It is a legally binding statement about specific medical interventions that you don’t want. This is where resuscitation statements come in (e.g. DNACPR).
  3. Who will speak for you. This is also a legal document, appointing a Lasting Power of Attorney (LPA). This is useful for people who have capacity. They can nominate a person to speak on their behalf, once they lose capacity.

If you want to find out more, there are lots of helpful websites and other resources, e.g. here and here.

When should you start discussions about end of life care planning?

Bearing in mind that you want to be prepared for the worst even when you are hoping for the best, there are some specific situations that should trigger discussion. Here’s a list.

  • The person, or their family, starts the conversation. (Pick up the clues! Create opportunities for discussion, e.g. when famous people, people in soaps on TV, or friends/family are dying)

  • There is a new diagnosis of a progressive life limiting illness, or a new episode of an existing life limiting illness. (Many people with learning disabilities also have life limiting conditions, e.g. tuberous sclerosis. Make sure you review their situation regularly. Is there a change? Would you be surprised if they died within the next 12 months? If not, start the conversation: “What if…”)

  • They have a diagnosis of a condition with a predictable trajectory, which is likely to result in a (further) loss of capacity, such as dementia. (It’s important to make sure that you know what the person’s values and wishes are, before they lose capacity to make this clear.)

  • A change or deterioration in condition.

  • Frequent hospitalisations. (See Fred’s chest infections – they should have triggered “What if…” discussions)

  • A change in a patient’s personal circumstances, such as moving into a care home or the death of a family member. (But be sensitive… see below my further thoughts on George)

  • Routine clinical review of the patient, such as annual reviews.

  • When the previously agreed review interval has finished.

  • The answer to the Surprise Question is “no”. (“Would you be surprised if this person were to die in the next 12 months?”)

Of course it is possible, and perhaps even desirable, to give everyone (regardless how young or healthy they are) an opportunity to start these discussions. They key is that they are sensitive discussions and they respect people’s values.

In the example of George, where the home manager wanted to be prepared for all eventualities (I’m giving him the benefit of the doubt, and won’t assume that he simply wanted to complete his tick box exercise), a better way of approaching the issue might have been:

George, we’re delighted that you are living with us now. Some people want to live in this home for the rest of their lives, and if that’s what they want, we try to make that possible. We hope that you live for a very long time, but here’s a question we ask everyone… If the worst were to happen and you got very ill, or you were going to die, what would you want us to do? Do you think you might want to stay here, or be back with your family perhaps? It’s not something you need to decide now, but if we need to make such big decisions, who should we talk to? Who would help you decide?

It might still not be appropriate to ask George this (and, as the CQC confirmed, there is no actual requirement to do so), but with sensitivity and in the right context, it might help both George and his family to know that his new carers are supportive and able to listen, and think ahead with realism.

What should end of life care discussions be about?

I’ve said it before, and I’m saying it again.

End of life care planning is not so much a question of where and how do you want to DIE? but where and how do you want to LIVE until you die?

This is not so much to do with OUTCOMES (Did he die in the place he said he wanted? TICK! Did he record his funeral wishes? TICK! Was he free of pain? TICK!). Targets like these may have their place, but they can have an adverse effect, if we focus on the targets rather than the person.

I really like the following ideas, which I have stolen from Saskie Dorman and her colleagues from Dorset End of Life Care Partnership (with permission – thank you Saskie!). Rather than talk about TARGETS, they talk about the CORE CAPABILITIES needed by health and social care staff to improve end of life care support for everyone.

What do we need to be really good at, consistently, to make sure that everyone has as good an experience as possible in the last year of their life? THIS:

  • We recognise when you may be in the last months of your life.

  • We all understand what really matters to you and your family, and focus on this together.

  • You are supported to live well in your own way, as part of your community, finding moments of joy where possible.

  • You are supported to anticipate what may happen towards the end of your life.

  • Your wishes are shared as appropriate (with your consent) so that you are supported through times of illness in a way which feels right to you.

  • You are as comfortable as you want to be, including in the last days of your life.

  • Those close to you feel supported, including after your death.

    Taken from:

Your end of life care planning discussions should help you to achieve all of these.

If you are a manager in any service that may support someone with learning disabilities at the end of life, ask yourself: Would we be able to do all of the above? Consistently? If not, what do we need to do to improve?

Doing this well needs a diverse team. Doctors may be better than care staff at recognising the last months of life, or anticipating what may happen. Those closed to the person will understand what matters most to them. Care staff are well placed to help people live in the way they want, even in declining health.

So, don’t worry too much about these questions…

  • Where would you like to die?
  • What kind of funeral would you like?

Instead, start asking really specific questions, tailored to the person’s situation. Like these…

  • Now that you only have 2 hours of energy per day, what would you like to spend it on? (Fred might have chosen to spend it on quality time with his sisters, rather than attempting to walk.)
  • When you can’t manage the stairs anymore, would you rather stay in your upstairs bedroom all the time (and have your meals there, and your visitors, but never go out), or would you prefer to move somewhere else with a bedroom on the ground floor, or a lift, so you can still go outside in a wheelchair? (Quite hard if there is no option of a downstairs bedroom in someone’s current home, but it’s a situation I’ve come across more than once. Plan ahead!)

Good luck everyone!

End of life care planning and people with learning disabilities (PART 2)

“Where would you like to die?”

This question is standard on most easy-read end of life care plans. It’s a very good question, but how useful is it to record someone’s choice well ahead of time?

It is not good enough to simply state “Irene wants to die at home”. It’s important to know why Irene wants to die at home, what aspects of “home” matter most to her, and how her needs and wishes might be met if home is not an option.

Perhaps she should be asked: “How do you want to live? How do you want to spend your final weeks/days/hours?”

Should all people with learning disabilities have an end of life care plan?

That’s the question I asked in my previous blog. Remember, we’re talking end of life care plans. We’re not talking funeral plans. (They are important too, but it’s a different discussion.)

Of course all people with learning disabilities should be involved and prepared for death and bereavement, where it affects them. (In fact that goes for all of us – you, me, the postman and the prime minister.)

The last thing you want is panicked decisions because you’re all taken by surprise. Or, worse, decisions that go against what the person would have wanted, if they were able to say. But end of life care plans should be tailored to the person and their circumstances. They should be useful and used. They should be working documents.

What isn’t particularly helpful, in my view, is trying to industrialise this. I am particularly bothered by reports of “All people in that service had an identical end of life care plan in their files.”

It’s not so much the plan itself that is most important, but the people who the plan is for, and the people who work with the plan.

Let me illustrate.

Here is what happened to 11 people with learning disabilities who took part in my very first big study. It’s over a decade ago, but still relevant. All were terminally ill with cancer. I spent a lot of time with each of them and talked with those who could talk (not all could; some had severe learning disabilities and communication difficulties). They all died during the study. Four people lived in their own flat at the time of diagnosis and seven lived in staffed residential care homes, where they had typically been for around two decades.

If they had been able to say, several months before they died, where they would like to be cared for and where they would like to die, I’m sure most (if not all) would have said “Here, where I am living now.” In fact two men, John and Richard, explicitly stated this wish.

But it can be difficult for people with learning disabilities, their families and care staff to imagine the physical and emotional changes that come with advanced illness and approaching death.

In the end, only three people died in their usual place (two in their care home; one in his own flat – unfortunately, he was alone and probably frightened). For the others, the transfer to a nursing home, hospice or hospital was mostly appropriate.

One woman, who lived in a residential care home, was confused about being at home. “I have pain,” she kept saying. “I should be in hospital.” She was transferred to a hospice and loved it there. Unlike in her own bedroom, there was space for the hoist and wheelchair she needed, her pain was better controlled, and her family, care home staff and friends could visit whenever they liked. “It’s handy,” she said. She was clear that she wanted to stay.

Both John and Richard changed their minds when they became more ill.

John recognised that the care he needed was so complex that his family could not manage to support him. He loved the care and attention he received at the hospice. John died in a nursing home where his family could visit without worrying about his physical care.

Richard, who shared a flat with his friend Charlie (with support workers coming in every day), had been fiercely independent and resisted any suggestion of residential care. When I asked him what it would be like if he became too weak to stay in his flat, he said, “That would be awful.”

There were no standardised end-of-life-care-plan-documents in those days, easy-read or otherwise. But if there were, Richard would undoubtedly have ticked the MY OWN HOME box. The people who supported him held lots of worried meetings to think about how on earth to make that possible. But a year later, Richard surprised everyone by deciding to move into a nursing home. He had become concerned about the burden on Charlie. “What would Charlie do if I had a fall and couldn’t get up?” Richard said. “I can’t be in my own flat. So a nursing home is better. I wouldn’t want to go back to my own house, because I would worry what happens when I am weak. It’s much better like this. I am well cared for. I feel comfortable and safe in the nursing home.”

It is for exactly these reasons that I, myself, do not have an end of life care plan that specifies where I want to be cared for in my final months, weeks, days. I have seen again and again how people’s choices and priorities change when they approach the end of life, in ways that are not always predictable.

Good end of life care planning allows for this. It involves thinking ahead to what physical changes and needs are most likely (so you need to work with doctors and nurses experienced in that kind of thing), and trying to match that with what is available and possible (so you need to work with the person’s usual care and support staff) and what matters most to the person (so you need to work with the person themselves, and their family and others who know and love them). How you record all these discussions doesn’t really matter – as long as it is recorded somewhere, and everyone involved knows what’s what.

Let’s say it again…

End of life care planning is not so much a question of where and how do you want to DIE? but where and how do you want to LIVE until you die?

What is most important to you in your final months? Your final weeks? Your final hours?

The multi-disciplinary team around Richard did a great job. They knew what Richard wanted, but they also knew that his physical condition would change, well before Richard himself truly understood this. The key thing was to establish what mattered most to Richard. In his final years, this was “being independent”. But as he gradually lost his independence, this changed to “not being a burden to Charlie”. Crucially, Richard’s decision to move into a nursing home was, in fact, honouring his desire for independence. It was his own decision.

Image taken from Ann Has Dementia (Books Beyond Words)

This blog was going to be a quick guide to good end of life care planning (when, who, how) but as usual, I have been side-tracked into story-telling. Oh well. There’s always a next time. Keep the discussions going!

PS The stories in this blog are told in this article and (if you want the full works) this book

End-of-life care planning and people with learning disabilities (PART 1)

Hands up. How many of you readers of this blog have an end-of-life care plan?

Hm. Thought as much. How about a written-down funeral plan?

If your answer was “no”, you’re not alone. When I ask this question in groups of people working in learning disability services, I can usually count the hands on one hand.

If you didn’t raise your hand just now: WHY do you not have an end-of-life care plan handy and waiting in your kitchen drawer? Is it because:

(a) You don’t like to think about death and dying. Let’s pretend we are all immortal.

(b) You are nowhere near the end of your life. You’re fit and well and you’re hoping to live another 30 years. Plenty of time later. No need to get ahead of ourselves.

(c) You have no idea what your end of life will look like, where you’ll be, what you’re going to die of, what your needs will be – so really rather tricky to make a detailed plan.

(d) All of the above.

Let me come clean here: I hadn’t raised my hand either. My reason (if you’re interested) was (c).

I don’t even have a funeral plan. I did in the past (occupational hazard – hospice nurses were sent on courses where you had to visualise your own death and plan for it) but I no longer like the music I liked then, plus I’ve acquired a husband and several children who might want to have a say in the matter. I probably should get a bit more concrete about this though – perhaps the reason for my lack of a funeral plan is a little bit of (b), mixed in with a concern that by the time my 30 years are up, yet another hymn will have become my favourite, so I’d rather not commit to Mozart’s Ave Verum Corpus quite yet.

(Quite fancy the cardboard coffin though. Decorated by my family. Let me put it on the record. Saves me writing it down and sticking it in the kitchen drawer.)

Now, here is the question this is all leading to.

Should ALL people with learning disabilities have an End-of-Life Care plan? Or a Death Plan?

I mean all of them. Young and old. Healthy and ill. Regardless of whether they want one or not.

This question has raised its head repeatedly over the past year. Here is an email I received from the mother of a young man with a learning disability and autism.

What I am concerned about is that the residential home he is living in wants me, his mother, to fill in a form for a “death plan”… The manager said all residents are filling these forms in and it is important to get this in place in the “care plans”. Could you please tell me why there is so much emphasis on this “end of life” stuff, as the majority of these people are still young?

Not surprisingly, both the mother and the son were rather distressed by being asked to plan for death.

Then there are the questions I get from learning disability service providers. Here is an email from someone who works at a large UK-wide organisation. A few of their services had recently been inspected by the CQC. That’s the Care Quality Commission, responsible for regulating and inspecting health and social care services. Inspectors will come round to your care home, look at everything from paperwork to paintwork, talk to anyone from manager to staff to people-who-live-there, and then publish their verdict: Outstanding, Good, Requires improvement, or Inadequate.

The email said:

During the initial feedback, the inspectors have commented about how we haven’t explored end of life with everyone we support and that we haven’t documented their wishes. I feel extremely uncomfortable with these comments – some of the people we support are my age and I would be very insulted/upset/angry if anyone tried to have a discussion with me about what casket I would want if I died.

Another manager I spoke to recently said:

Our service has produced easy-read end of life plans for people. We discussed them in a home where six people with learning disabilities live. Two people wanted to do the plan, but the other four didn’t. When the CQC inspectors came, they marked us down for only having an end of life plan in two people’s files, not all six.

A student learning disability nurse told me a couple of weeks ago:

On one of my placements, ALL residents had an end-of-life plan in their personal files. Put there by the manager, presumably. They all looked identical.

Oh dear. What is going on? It’s no wonder that the most frequent question I get from learning disability services is “Do you have an easy-read end-of-life plan that we can use?”

As it happens, there are plenty of templates around. The PCPLD Network has collated some of them on this page. But I feel uncomfortable with all of them, because of two fundamental problems.

Problem 1: If you standardise personalised care, it is in great danger of becoming impersonal.

If I were an inspector of a home of six people with learning disabilities, and they all had an identical-looking end-of-life plan in their notes, I would hear alarm bells. Documenting someone’s end-of-life wishes should come at the end of a process of discussions and explorations, and it should be regularly reviewed. The format of documentation should fit the person. A document, easy-read or otherwise, is not the starting point. It’s the end point.

Problem 2: Most of these documents are not End of Life Plans. They are Funeral Plans.

Nothing wrong with having a funeral plan, but don’t call it an End of Life Plan. And definitely don’t call it an End of Life Care Plan. The trouble is that I’m not sure what people actually mean when they talk about “end of life care planning”. (And with people, I mean everyone. Families, service providers, inspectors.)

Confusion reigns…

CONFUSION: What is (and what isn’t) an end of life care plan?

What should go in it? When should it be made? Crucial questions. I’ll try and answer them in my next blog post.

CONFUSION: With regard to end of life care and planning for the end of life, what exactly are the CQC requirements?

What is expected of services that provide day-to-day support for people with learning disabilities of all ages (including residential care)? This one was intriguing, so I did a bit of digging. First, I looked up what the CQC inspection criteria actually are. I found that for adult social care services, there is indeed this inspection question (see p.17 of this document): 

But whilst most other “key lines of enquiry” apply to All Services, this one applies only to Services that provide care to people at the end of their lives.

I searched on. What do they mean by “the end of their lives”? I could not find a description of this anywhere in relation to adult social care services, but this is how “end of life care” is defined in relation to hospital services (and it’s a good definition, used widely):

End of life care involves all care for patients who are approaching the end of their life and following death. (…) The definition of end of life includes patients who are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes patients whose death is imminent (expected within a few hours or days) and those with:

  • advanced, progressive, incurable conditions

  • general frailty and co-existing conditions that mean they are expected to die within 12 months

  • existing conditions that put them at risk of dying if there is a sudden acute crisis in that condition

  • life-threatening acute conditions caused by sudden catastrophic events.

The hospital inspection criteria include the following questions:

Perhaps the CQC confusion arises from the fact that many learning disabilities aim to provide “homes for life”, so in theory that includes caring for people at the end of their lives. And yes, I agree that all services should know how to spring into action when the people they support do indeed reach the end of their lives. And, as the CQC rightly points out, timely recognition that the end of life is approaching is a sign of outstanding care.

(Quite how you do this is a different question altogether, that would turn this blog post into a book, but I’ll give you the conclusion: “More research is needed.”)

So… does it mean that all people with learning disabilities should have a personalised end-of-life support plan, ready to go? Or only those who are actually approaching the end of life?

I decided to go straight to the horses’ mouth, and got in touch with the Regulatory Manager at the CQC.

Which particular services, exactly, does the R3 requirement apply to? This is what they said (via email, so I’ve got it in writing):

Interpretation of whether R3 applies or not depends then on a combination of inspector judgement and provider positioning – a ‘hard and fast rule’ is counter to CQC’s general approach which focuses on outcomes for people.  I would say that in the general course of things, R3 would apply more typically in hospice and palliative care environments rather than general learning disability provision per se.

Does that mean that the CQC inspectors got it wrong? The ones who marked down a service for not having end-of-life care plans for all six residents with learning disabilities? I don’t know enough of the details, but it’s certainly worth debating. This is what my CQC Regulatory Manager went on to say (and I’m quoting a large chunk of email here – the red italics are mine):

I think in summary I would want to say that in my view there is no blanket requirement for providers to have in place an end-of-life plan of care for a person with a learning disability. If such a person is known to be in the end stages of their life, R3 would be engaged in adult social care services, and R2.8-R2.10 in hospital/healthcare CQC registered settings. For staff to discuss a person’s wishes upon their illness or death does not necessarily presuppose the need to have a detailed plan for it. I would agree that there needs to be nuance and personalisation in how these matters might be discussed with people and their families, and that it would not be appropriate or needed in all settings at all times.

They end the email with this invitation (do take them up on it, if you feel the need):

It is open to providers to discuss with CQC during or after the inspection if they think that CQC have misinterpreted the needs of people being met at a particular services.

So there you have it. By all means, talk about death and dying with everyone.

And by all means, if a person with learning disabilities is interested in thinking about their funeral and documenting their wishes, support them. Find a personalised and meaningful way of thinking and talking and documenting this together. Who knows, someone may have strong views on whether they’d like the mourners at their funeral to have tea or coffee.

(Personally, I don’t care, and I wouldn’t wish to document it. What if I specify tea and cakes, but my children are longing for a whiskey and crisps? So I’m a bit puzzled by some of the easy-read “end-of-life plans” I’ve seen that focus on those kind of choices. If I needed to present someone who needs decision-making support with a list of possible choices, their post-funeral refreshments wouldn’t be top of my list. How about helping them choose what refreshments they themselves would like to have right now?)

An end-of-life care plan is something quite different.

It is a dynamic plan that should be put in place for anyone who fits the “approaching the end of life” criteria I described earlier. Of course the difficulty is that death is so unpredictable. Who knows? The best I can give you is what is known as the Surprise Question in palliative care:

Would you be surprised if this person died within the next 12 months?

That person may or may not have a diagnosed terminal illness. But if your answer to the Surprise Question is No, actually, I wouldn’t be that surprises, then it is time to start planning. As they say, “Hoping for the best, preparing for the worst.”

To be continued.

PS Unless I’ve missed something, there is no CQC requirement that All people with learning disabilities must have a funeral plan in their files.

And another PS… In our GRASSroots group of people with learning disabilities, who have been meeting monthly for the past four years to talk about dying, we have an annual vote on what the group would like to do. These two choices have been consistently voted down, so we haven’t done them. Not sure what the moral of that story is.

Pondering the D-word… Dementia, Disability, Dying and DIGNITY

Let’s think about dignity.

I was at my Pilates class recently, trying to concentrate on my stomach muscles, when talk in this group of women of a certain age somehow turned to dementia.

What I fear most, one woman said whilst reaching for her toes, is losing all your dignity.

Yes! Yes, me too! said the others, before asking me, How about you? Aren’t you worried about that?

I thought about this, and I said no, I am not worried about losing my dignity.

Why not? Because I don’t believe I will lose it.

To me, dignity means being seen and valued as a human being. Being loved. Having the opportunity to do what I can do (whether that is looking after myself, making choices, maintaining relationships…) and help with what I cannot do (whether that is looking after myself, making choices, maintaining relationships…)

There was a time when I was unable to walk or feed myself. I had double incontinence and needed to be cleaned up several times a day. I was unable to form a coherent thought, let alone speak. Yet I didn’t feel undignified, and I’m 100% certain that nobody else would have said I lacked dignity.

That’s because at the time, I was a baby.

Yes, that’s me with my mum. I was 10 months old and really quite dignified.

Dignity is a relationship thing.

We give it to each other, by recognising each other’s worth and beauty, and the contribution we all make to the world simply by being in it. It has nothing to do with my ability wipe my own bottom, or to speak in full sentences, or to understand how the washing machine works. It has everything to do with other people understanding that I can’t wipe my own bottom, and doing it for me, along with my washing.

When I was a baby, my mother gave me dignity by loving me and caring for me.

When she was an old woman with dementia, I gave it back to her. When she was dying, she needed help with everything (yes, that included help with cleaning up after bowel movements and doing her washing). But she was never undignified, because she was always my mum.

With my mother in 2014, a few months before she died. Always dignified, despite her dementia.

Isn’t that life’s natural cycle? We need help when we start; we learn skills and use them; and we decline, losing those skills and needing help again. Some of us may need more help than others throughout our lives.

Loss of dignity is not related to disability, or dementia, or dying.

It seems to me that it is exactly the diversity of life that makes it so beautiful.

I know many people with profound disabilities who have never been, and never will be, able to wipe their own bottoms – yet they are profoundly dignified. (They might lose their dignity if there is no-one to wipe their bottom. That is a political point: there must be enough support for families, friends, carers and staff who are needed to help us all keep our dignity.)

Stephen Hawkins’ life was dignified, because people respected and valued him. They understood the things he couldn’t do for himself and helped him with those things.

In my line of work, people talk about “dying with dignity”. It crops up in the highly complicated debates on assisted dying.

I’d like to challenge you to think about this.

What does dying with dignity mean to you?

Does it mean being autonomous until the day you die, being able to do everything for yourself, being fully in control of every aspect of your life (and your death)?

Or do you think it is possible to live your final years in a dignified way, and die a dignified death, whilst needing help with things you can currently do for yourself?

If I live long enough, there is quite a good chance that I will get dementia. It runs in the family. My answer to the Pilates women is this:

I don’t fear losing my dignity.

What I fear is that I will be seen as a nameless Woman With Dementia, rather than Irene Who Happens To Have Dementia. It’s happened before – not the dementia bit, but the bit where you feel you are seen as a nameless patient, not a person. (In my case, a cancer patient. If you’re interested, you can read about that here.)

What I also fear is that I won’t be able to accept life’s cycle; that I’ll rail against it; that I’ll find it difficult to accept my limitations and difficult to accept help. It’s much easier for me to pretend to be Superwoman than to admit to myself that I’m not. (Quite a learning curve it was, my experience of being a Cancer Patient.) The way to help me (and you may interpret this as my Advance Care Plan) is to support me without fuss, and never to stop seeing me as Irene, however incapacitated or confused I might be.

A time may come when I might not recognise my son and daughters, but I hope I’ll still recognise their love. As long as they recognise me, and love me, I will have my dignity.

How to talk to people with learning disabilities about death (and why you should)

This blog post was first published by Marie Curie, see here.

Some of the challenges people with learning disabilities face when it comes to death and dying are hard to fix, but it seems to me that some solutions are outrageously obvious. Talking openly to people about death, and involving them in everything – including shared rituals of grieving – is one of them.

My friend Pete, who was terrified of death

Let me share the story of a good friend of mine. I’ll call him Pete. Pete had severe learning disabilities and he was terrified of death – perhaps because he watched his father die a painful death at home when he was a child. Or perhaps because when his mother died, Pete was on holiday. He wasn’t told that his mother had died until well after the funeral. Pete came back from holiday and found himself having to move, completely unexpectedly, to a residential home full of strangers.

Pete’s mother died decades ago. I keep hoping that Pete’s story is a history, but sometimes I still hear similar stories of exclusion.

A conspiracy of silence

When I was a hospice nurse in the 1990s, many of my patients had adult sons or daughters with learning disabilities, yet they rarely visited. My suggestion that they should was often met with alarm. Like Pete, many of the relatives with learning disabilities had not been told that their parent was ill, and certainly not that they were expected to die.

“She couldn’t possibly understand!” people would say. Or, “I don’t know how to tell her.” Or, “It will only upset him. What’s the point of doing that?”

Later, when I started doing research into all this, my co-researcher Gary Butler (who has learning disabilities himself) used to get particularly angry about this. “Of course he is going to be upset!” he’d say. “His father is going to die! Why aren’t we allowed to be upset?”

He’d go on to explain, “I know why. It’s because people don’t know how to cope when people with learning disabilities are upset.”

What should we be doing?

But talking openly about death and dying with people with learning disabilities is important. Most people cope best with difficult changes in their lives if they have some way of preparing for it, and if they are helped to understand what is happening. This includes telling people that someone close to them is likely to die, because otherwise, the death will be experienced as an unexpected, sudden death – which is much harder to cope with. Knowing that a loved one is going to die is sad, but sadness is not, in itself, a good enough reason to withhold such knowledge.

Picture taken from Books Beyond Words: “Am I going to die?”

How to talk about death and dying with people with learning disabilities

  • Use simple words. Most people with learning disabilities I have spoken to about this, tell me that the best word to describe death is “DEAD”.
  • You can also use the person’s own vocabulary about death. Just make sure it’s their jargon, not yours.
  • Check with them what they think those words mean. If someone says “Mum’s gone to heaven”, ask what they think heaven is. It’s also worth checking their understanding of death. Do they think mum will ever come back from heaven?
  • Beware of euphemisms! “We lost dad” (why don’t we go looking for him then?). “He has gone to a better place” (Sounds nice. Why can’t I go there too?). One man I knew was excited about going to Devon for a holiday, as he thought it would be a chance to meet his friend who, he’d been told, had “gone to heaven”. A classic case of mishearing the words.
  • Some people don’t cope well with uncertainties (such as not knowing exactly when the person is going to die). This is particularly true for people with autism spectrum disorders. Think carefully about how to talk with them about what will happen in the future. It may help, for example, to go through a script (“We don’t know when Dad will die, but when he does, this and this and this will happen”). This can help in preparing someone to cope with what will be an upsetting time.
  • Talking is not the only way to explain what is happening. Visiting the ill person or, better still, involving the person with learning disabilities in caring for that person, can be extremely helpful. It can also give comfort after the death.
  • Remember that many people with learning disabilities will not initiate conversations about death, but that doesn’t mean they don’t want to talk about it. You can help by talking about the ill or deceased person in day-to-day conversation, helping people to share memories, etc.

Have a go. In the words of one of my advisors with learning disabilities:

“Tell the person the truth. Even if it’s bad news. Don’t be frightened!”

If you want more tips and advice, visit my website on How to break bad news to people with intellectual disabilities.


“Our hypothesis was wrong”: How people with learning disabilities can become great researchers

“I am a man with a learning difficulty. When I was about five or six, the headmaster at my school said that I couldn’t be taught.”

Now here is Richard a few days ago, the man who couldn’t be taught, having successfully completed our 8 week “How to do research” course for people with learning disabilities. At a university, no less. (Yes, he said, do put my picture on the internet.)

Ten students had come faithfully for two hours every week. We were blown away by their commitment, enthusiasm, questions and ideas. There were lots of punch-the-air-in-triumph moments over these past few months. For me, one of those was when a student said exactly this:

“I found that my hypothesis was wrong.”

Now that’s a result. The students had come up with their very own research questions. Here’s the long list:









And, following a process of voting by the students, the winning topic was “Employment, jobs and benefits”.









Their research question boiled down to this:

“Why don’t more people with learning disabilities have good paid jobs?”

So, we split the students into three groups, each focusing on a different methodology. Three students worked on a questionnaire, to be handed out to their fellow students. None of these three students had paid jobs, so they worked out questions about this. To their surprise, they found that most of the respondents did have a paid job. Hence the student’s observation that his hypothesis (“People with learning disabilities don’t have paid jobs”) was wrong.

The students fill in the questionnaire

Another group of students worked on doing a one-to-one interview. They selected me as their participant. Their questions were brilliant (“What does this university do to support the employment of people with learning disabilities?”). Their interview skills were pretty good too, considering they’d only had a few hours to plan and practice.

Three students hold a face-to-face interview

(“Irene couldn’t really answer our question,” one student explained to her family afterwards. Because they don’t employ people with learning disabilities at the moment.” Indeed we don’t. All my research funding applications over the past few years, that have included paid co-researchers, have failed.)

The third group of students worked on planning and facilitating a focus group. They, too, wanted the participants to be people with the power to decide whether to employ people with learning disabilities. Three of us (myself, a tutor and one of the students’ support workers) took part. Again, amazingly good questions, facilitating an excellent group discussion. (“What do you think makes a good employee? What stops you employing people with learning disabilities?”). 

Three students facilitate a focus group

This course was an experiment.

I’ve wanted to do it for years. I’ve worked with people with learning disabilities as research advisors and co-researchers. It took me an entire decade to learn how they can truly contribute to and improve our studies, and what adjustments we had to make to ensure they can participate in a meaningful way. Research funders now require “user involvement” in research, but there is little guidance on how to make this happen in practice. Too often, the way we do research remains unchanged, with the Advisors With Learning Disabilities simply sitting in meetings that mostly go over their heads. As one of our contributors once said:

I don’t want to be there just because you want bums on seats.

I have gone a step further and worked with people with learning disabilities as co-facilitators of focus groups. We’ve also had co-researchers with learning disabilities help us interpret the data. But this takes time, and what we never had time for was to teach people properly. I, and most of my research colleagues, have had years of research training; but we somehow expect people with learning disabilities to join us and contribute, without any training at all.

How on earth are they supposed to know what research is?

What is the difference between a Research Question and any old question? What research methods to you choose, and why? What are the difficulties and the possibilities with each method? What makes a good interviewer? What do you need to think about when you run a focus group? What is the difference between open questions and closed questions, and when or why would you use them? How do you make sense of data?

I wondered whether we could really teach those skills. I wondered whether anyone was interested.

We applied for a small amount of grant funding from the NIHR Clinical Research Network, and received £3,000. This just about paid for Claire, my excellent research assistant, to prepare and deliver the course. I threw in my time for free, and two colleagues came to help out for a couple of the sessions. It enabled us to run the course free of charge for students. We reckoned we could accommodate ten students. We’d run it as a trial course.

Where to find these students? Would anyone be interested? I tweeted the information once and was inundated with interested people and organisations. In the end, we had 25 applications and selected 10 students at random. I had not foreseen the heartbreak for people who didn’t get in. One unsuccessful applicant telephoned me within minutes of receiving the email, telling me how hard it is to be always, always turned down for things.

I also hadn’t foreseen how much it would mean to the selected students, who (as we heard from Richard) have often been told that they were no good at school, to come to a university. My sister goes to university, one of them explained. And now I’m going too.

We treated them seriously, and they rose to it. Their confidence soared. Even the very-very-shy student stood up and spoke at the final session this week, presenting their work to family, friends and colleagues. Afterwards, their families and support workers told us that at home and in their jobs, too, their confidence had rocketed. For some students, who work for Mencap, it has already led to new research-related duties at work.

The students always arrived early, homework done, eager to start. And they were simply fabulous. Every week, I’ve been suprised by their insights and their ability to grasp quite complex concepts.

And we’ve had such fun!

They wept with laughter at the session on “Interview Skills” (and, more importantly, they remembered and incorporated those skills when they conducted their own interviews a few weeks later). Claire and I had role-played a very bad research interview, and got the students to hit a buzzer (making rude animal noises) every time they had a tip for me on how to improve my interview skills. Without us telling them anything about what makes a good interviewer, they came up with a pretty comprehensive list (all in the space of 15 minutes):

  • Eye contact!
  • Don’t talk about yourself all the time!
  • You’re putting words into her mouth!
  • Don’t look at your watch, or your phone!
  • This is not about you, it’s about her! If you make yourself look so important, it makes her feel bad!
  • If you’re asking a sensitive question, you have to explain why!

We filmed that session – you can watch it here.

What strikes me, watching it again, is that every single student contributes something useful at some point, from the most vocal to the most shy. For those students to tell me that I’m pretty rubbish and should do better, had the added benefit of giving them confidence that they can talk to a Learned Professor, and even correct her.

We sent them home that week with the instruction to hold a five minute interview with someone (on the same topic as our role play) and then come back to us with a list of Suggestions for Interviewers.

No need for us to write the Research Handbook. The students wrote it themselves.

Similarly, the focus group week was impressive and fun. We’d grabbed a couple of colleagues in the office, to form a focus group for the students to practice on. (Our brief was that they’d been commissioned by a bus company to answer this research question: “Why do or don’t people take buses?”) The students soon discovered that facilitating a good discussion, where everyone contributes, is hard work. They noticed that one of the focus group participants talked too much about irrelevant stuff, whilst another said nothing. They took it in turns to try and do something about that.

(We’d been a bit sneaky, briefing our colleagues beforehand to give the students these challenges.)

Two of the students practice running a focus group, with the rest of us observing (and students taking over the “interviewer hot seat” if they had a suggestion for improvement)

The course finished this week. So what’s next?

I have already received enquiries from researchers who need people with learning disabilities to be co-researchers or advisors on projects they are planning. Would our students be able to do this? (Most students are interested in hearing about these kinds of opportunities, so I’ll pass it on to them).

In the autumn, we will write an academic article about the course. More or less all of the students want to come back and help us with that, so it will be a co-authored paper. We are also hoping to put together a short video about the course.

And we will make the course content available to others, so if you are interested in running a similar course, do get in touch. We’re happy for you to use our materials as long as you attribute it to Kingston & St George’s University. The more people with learning disabilities are trained in research, the better.

But really, what we should do is run this course again. And again.

There is clearly a need out there. All I need is someone to fund it. (We don’t want people with learning disabilities, who are usually on benefits or low incomes, to have to pay for such a course.)

I’d also love to expand. These 8 weeks have shown us that people with mild and moderate learning disabilities really can be taught research skills, and that they are keen. We could only scratch the surface on this course. For those who discover that they really like research, it would be brilliant if we could run a longer, more in-depth course that would equip them to be great researchers. They could do it.

It has made me even more excited about possibilities for working with co-researchers in the future.

I have no research funding at the moment (as I said, I’ve failed spectacularly in recent years, with most of our grant applications turned down), so all I can do is dream… If only I could let funders understand that including co-researchers will make for the most brilliant research.

These students are not stupid. They really can learn, and they did. It’s just that they had never had an opportunity like this before, to learn complex skills in a serious but accessible way. They are rightly proud of their success, and we congratulate them.

I hope Richard’s headmaster, if he is still alive, reads my blog posts. I think he will find that his hypothesis was wrong.

Richard, if you are reading this: It wasn’t you who couldn’t be taught. It was the headmaster who couldn’t teach you.



The asylums where society sent its “inadequates”

Picture this, if you can bear it.

It is the 1980s. A woman in her 50s screams as two strong men hold her down so that a nurse, who is 23 years old, can put a tube into the woman’s nose, all the way down into her stomach. She will be given an artificial feed.

The woman tries everything possible to resist. She doesn’t want to eat.

She hasn’t eaten for months. I don’t think anyone has tried to figure out why not. In any case, the woman never speaks.

This procedure happens twice a day. The place is a very large psychiatric hospital in the Netherlands, on a long-stay ward for the mentally handicapped. The burly men are a senior manager and a strong nursing assistant.

The young nurse is me.

I don’t remember the woman’s name. All I remember is that she had Down Syndrome.

Looking back three decades later, it is blindingly obvious that this was nothing short of ABUSE. If we heard of anything like this happening today, we would demand that the hospital was investigated and the nurse was dragged in front of a disciplinary panel, and possibly struck off the nursing register.

How on earth did I get to that point, the point of not only tolerating but taking part in abusive practice?

I was full of ideals. I had spent almost two years in the L’Arche Community in London, where people with mental handicaps (as it was then called) had become my friends. During my nursing training a few years earlier, I was told that I was paying too much attention to the young men and women in the institution where I was sent for my Mental Handicap Placement – it was a bad idea to become attached, bad for the “patients”, bad for me.

But now, in L’Arche, I had experienced our common humanity: the absolute importance of seeing each other as unique and important individuals.

Sharing a cuppa with Keith Lindsay (L’Arche London, 1985)

So, when I went back to the Netherlands and joined a nursing agency, I asked them to send me to work with the mentally handicapped (people weren’t yet called “people” in those days). The experience of not just spending time but sharing time with people with intellectual disabilities had been transformative. I wanted more of it. I wanted to share it with everyone.

I wanted to change the world, so that everyone would know everyone’s value.

It was a culture shock, to say the least, to find that people with intellectual disabilities lived in places that could not be called “home” in any way, shape or form. Where people were lined up naked in the corridor, waiting for their turn in the shower, never mind the builders and repair men walking past. (I was utterly horrified, but what do you do? How do you change it, as a young and unimportant agency nurse?)

It soon became clear that the ward staff, who prided themselves on being a wonderfully tight and supportive team, were supportive of each other, rather than of the people who lived on that ward. Those were not really people. The staff had built walls.

As the new person on shift, I wasn’t aware of those walls at first. I soon found myself on the wrong side (or, as I saw it even then, the right side).

There was the meal, shared around the table with some ten people including myself and another staff member. A particularly nice pudding was communally admired by sending it around the table, everyone taking a bite. Me too, when it was passed to me by the person I was sitting next to. My colleague was horrified, trying to save me from disaster by calling out “No! Don’t eat that, the patients have eaten from it!”

“Then why can’t I?” I said, and took my bite.

(What did she think I might catch? The Mental Handicap Virus?)

Then there was the trip to the swimming pool with the communal changing room. Together with another colleague, I helped three women to change into their costumes. Then I changed into my own. My colleague tried to stop me from the indignity of displaying my birth suit (“The staff changing rooms are over there!”) but I didn’t want to go there: “If they can change in here, then surely so can I?” People’s nakedness would only be undignified, I reckoned, if we made it so, by hiding our own nakedness in the staff changing room.

This was a temporary job. I couldn’t have lasted in that team. I would have been an outcast. It was hard, but my small acts of defiance, of trying to turn patients into people, kept me vaguely sane.

But then came the episode with the woman who was refusing to eat.

This was the real reason they needed an agency nurse. Putting in a nasogastric tube was a job for a trained nurse. It was the one thing I was required to do, which couldn’t be done by anyone else, because there were no other trained nurses on that ward. Articifial feeding was necessary, important, part of the plan for this woman. I wasn’t asked to do it; I was told to do it. By the most senior manager, no less, who came out of his office specifically to assist with the unpleasant task. Refusing to do this would mean I’d lose that job, and not only that, but my nursing agency would have been told that I was no good. End of career.

I didn’t think any of that through, though. I simply went with the flow. I did what was expected. I did as I was told. Clearly, everyone thought this was OK, so who was I to dispute it?

But coming home from those shifts, I cried and cried.

Day after day, I cried. It just didn’t seem right. I was devastated that the woman had to be treated in this way. There was no-one I could talk to about this. I probably couldn’t even explain why I thought it was all wrong. Weren’t we helping to keep this woman alive, by feeding her? What was the problem?

I was perhaps even more devastated that I couldn’t save the world. I thought I could live my ideals, living and working in a way that I knew was right, anywhere. But I found that I couldn’t. Faced with an overwhelmingly large institution, where staff were utterly institutionalised and patients were dehumanised, I had two options:

  1. Let my ideals go, and become part of the system
  2. Leave

Readers, I left. Around that time, someone from L’Arche London telephoned me. The new home they had been renovating would soon be ready to welcome its first residents, and would I be interested in becoming House Leader? I didn’t need to think about it. I said yes on the spot. Some months later, I moved back to London and started visiting insitutions, just like the Dutch one I had escaped, to meet the people who would become our first residents. Including Carol Bell, who had grown up in such an institution. She was part of the (hopefully) last generation of men and women living their childhood and adulthood as patients rather than as people.

The reason I’m telling you all this now is that I have just forced myself to watch an old documentary about St Lawrence’s Hospital.

This is one of the asylums where society sent its “inadequates”. This is where Keith Lindsay grew up (the wonderful Keith – see photo above): I spotted him 44 seconds into the documentary. I knew it was a grim film to watch, but I didn’t realise quite how grim. Many of the people I’ve known have grown up here, or in similar places. They were profoundly deprived as children, utterly starved of attention and stimulation. It’s horrific. Carol and Michelle and Keith and so many other friends were, truly, survivors.

This film shows how horrid life was for the patients, but also for the staff, who needed to dissociate themselves completely in order to be able to cope. It’s a culture that turned nursing staff into zoo-keepers.

If you can bear it, do watch this film. It was filmed in 1981. That is very recent history. It is living memory. This is what our society thought we should do with people like Keith and Carol and Michelle.

We have come a long, long way, but we cannot be complacent.

Cultures and deep-seated attitudes are not easily changed, and still linger, as the alarmingly recent Winterbourne View scandal has shown. Cheer on the whistle-blowers, the campaigners, the quiet humanisers. I wish I’d been one of those whistle-blowers at the age of 23. I wish I could have done something better for that woman who was refusing to eat.

I couldn’t help her, but she certainly helped me. She was my turning point, the person who made me realise that I had to live my life differently. Sending me back to England, to be welcomed again by Michelle and Keith and other friends in L’Arche; and in turn, to welcome Carol. It is a tribute to the power of their human spirit that they not only survived the decades of deprivation, but thrived.

So thank you, woman-who-refused-to eat. I just wish I could remember your name.


PS those of you who have followed Carol’s story, and seen her obituary in the Guardian, might like to know about the effort to raise funds for a crematorium plot and simple memorial at the local cemetery where her many friends can remember and mourn her. See here.

The story of Michelle Antia: a eulogy

Here is the eulogy, given at Michelle’s funeral with such eloquence by our good friend Vivienne Frankish. Thank you, Vivienne, for letting me share it here: The story of Michelle’s life.

Vivienne gives the eulogy 

Michelle, our belle…

Can it be that the force of nature that is Michelle Antia has been stilled, and our dear Michelle has completed her life, and that we are giving thanks and saying goodbye?

Michelle, possibly the most passionate woman I have ever known.
Michelle the loving, the hating, darting looks of fire –
Michelle the contemplative, the companionable, the survivor, the learner –

How to pay tribute to you, do you justice? There are so many stories – too many for now, but be assured, all of us who knew you will keep telling your stories for a very long time to come.

Let’s remember the very beginning.

Sadly, when you were born it was difficult for any mother or family to bring up a child with a learning disability. Resources were scarce, and mothers were advised to place their children in a specialist home and to forget them, to get on with their lives. So, as a child you lived in the Fountain Hospital, and as a teenager moved to Southside.

We know hardly anything of these years, just glimpses… Some favourite songs – You Are My Sunshine. Paper Roses. The way you write M for your name.

But signs, too, that people had not always been kind, and you had to find ways of surviving. Ways that challenged us.

There is one thing we do know about. An important friendship.

During all that long time you had a close friend, an inseparable friend – and her name is Janet.

In 1977, when the big hospitals were closing and “Janet” came to live in The Vine (the first house in the newly founded L’Arche community), because you were both inseparable, you came too. Lambeth Council wasn’t happy about it, but somehow our strong founding women, including Therese Vanier, made it happen.

And you began making the hundreds of friends who are remembering you today, here and across the world.

One of the founders of The Vine remembers that when Michelle first came, she loved the food but wasn’t keen on the idea of household tasks. She was outraged at the very thought of helping with the washing up, which she’d probably never had to do before…

Eventually, Michelle saw that her new lifestyle came with benefits. She began to settle in. There is an old Mencap film called A Home Of My Own, and some of it was filmed in The Vine. There we see a young Michelle, slowly, with great concentration and stillness, cutting up a cabbage for supper.

[Irene’s note: if anyone knows where to get a copy of that film, or indeed any old footage of the Fountain Hospital, Southside, or St Ebba’s Hospital where Carol lived, do let me know!]

I met Michelle 36 years ago in 1982. I was a workshop assistant. Michelle didn’t take much notice of me. We would sing along together as we worked. We’d weave little bags, and make tea and eat lunch. Janet and Michelle would play draughts after lunch with a Zen-like focus and I’d watch the checkers migrate off the board and down the table in a sequence of mysterious moves.

Again, in Michelle, that stillness…

Janet and Michelle by now had emerged from their close sisterhood into being their own people.

They each moved from The Vine to found a new L’Arche house. Michelle, together with “Fiona” and Nicki, founded The Sycamore. Others joined them soon after.

Michelle in “The Sycamore” household in 1985, a year after opening. Irene in front row (holding the cat); Nicki standing behind her, alongside “Fiona”. Keith (front row, far right) arranged all the flowers for the funeral; Nicki was there on the day Michelle died and helped carry the coffin; Marie (between Irene and Michelle) had travelled from afar; Fiona half-spoke-half-sang at the funeral service. John and another Keith (back row, far right and far left) have both died.

And this is where Michelle really blossomed and grew into her womanhood. It was a fusion of the right time, the right place, the right relationships.

Michelle became the local ambassador for L’Arche. The people next door held neighbourly gatherings – they were ‘something in the Foreign Office’. Michelle and Nicki were invited. Michelle knew exactly what was required of her as a guest. She was charming. She responded to being treated with dignity and respect by being dignified and engaging. A diplomat among the diplomats. Michelle was instrumental in helping the household establish its place in the street.

And it was while at The Sycamore that Michelle re-connected with her family.

Grandma was a regular visitor. Michelle was fiercely protective of her Grandma, and of Grandma’s handbag (glimpses again of how to keep precious things safe in the institution).

Through Grandma and Uncle, with a fair amount of detective work and inventive enquiry from assistants, Michelle made contact with her mum, who had left the UK a long time ago. When they took the plane and re-connected in Canada, Nicki remembers it was a natural, no-fuss occasion.

“Hello Mum.”

In time, Michelle met more of her family in Canada and the States.  Michelle didn’t ask for much. Knowing that she had a place in her family, her family: that was what mattered.

Michelle was a parishioner here in St Matthews Church. She was confirmed here into her faith. Some of us noticed how Michelle carried a particular love, a devotion for Mary, mother of Jesus.

Michelle as Mary in the nativity story

Michelle had such a capacity for friendship.

She lived attraction and rejection at a profound level, and was vulnerable to falling in love. She longed for that someone special, just for her. She loved deeply. Sometimes she hated you at the same time.

Sometimes she just hated you.
(As we know, hate is not the opposite of love.)

Michelle with Carol

Some she loved passionately. Some, like her housemate Fiona, quietly, steadfastly. She had that ability to be alongside you, companionable and still, engrossed perhaps in her drawing and her writing.

I remember doing a collage with her on a retreat, and her chosen medium was digestive biscuits. We went into a kind of digestive biscuit meditation together. Michelle taught mindfulness classes.

And she could be a minx! The looks – the Who can keep this up the longest? – that often finished with dissolving into laughter.

And the craft workshop! She adored the Stonework. It was dusty work and we had special overalls, but Michelle was a dust magnet. She would be dusty from head to toe. The Sycamore assistants would complain, would make pleas on behalf of her hair care – but Michelle wore her dust with pride.

Michelle in the Stone workshop

She stood up for herself: Stop it. Don’t like it.

Loved doing new things: I’m learning!
When she liked you: Cheeky Monkey.
When she didn’t … Well, there was the kindly helper from a clown workshop who said, Michelle has chosen her clown name. It’s “Bucket”.

Michelle had her health difficulties.

She just got on with it. But the time came when ill health was getting in the way of her living the life she wanted, and so Michelle left her The Sycamore. It is a lovely house and indeed Michelle loved it, but she needed a home where she could move around easily without stairs and landings getting in the way.

So she moved to “Gowrie House” Care Home, and she created another community of new friends.

So many friends…

And we remember:

How Michelle was radiant when she was excited, pleased, happy.
How she loved her families, her birth family, her L’Arche family and her Gowrie House family.
How she created community around her. She insisted on it. When she was in hospital, all the nurses knew her and loved her.

At Gowrie House she would position herself at the hub of things, in the main room sitting next to her good friend Colette, or in the office with the staff, or upstairs with Ann, her favourite staff member, working alongside her.

She was poorly such a lot in these last few years. Each time we thought, This time she won’t recover, and each time she did. She surprised us again and again.

Irene with Michelle in 2018

In the end she surprised us, by dying so quickly, so peacefully, finally letting go.

Her life complete.

Michelle taught us how to see her – and she continued in her teaching even after she died. Helping the staff at Gowrie House, who loved her and cared for her so well, to find a way to say their thanks and goodbyes. And for her friend, Colette, to bless her journey with a prayer.

Michelle: a tempestuous lady, with a quality of stillness, of presence and connectedness.

Michelle, who always stayed true to herself and was not going to be bent out of shape for anyone.

Here I am.
See me as I am.
I am complex, and I am so worth getting to know.

After she died, I and others sensed her qualities of stillness and connectedness there in the room.

Michelle, we thank you. We love you.

You will be in our thoughts whenever we sing Michelle Ma Belle, our beautiful, passionate, compassionate, complex companion and friend.

(Vivienne Frankish)

The story of Michelle’s funeral

For these past few weeks, I’ve been floating in a fog of funerals and farewells from which I’m not quite ready to emerge. Trying to have some rest and restoration this weekend, so I’ll be able to focus on work again on Monday (there’s a research funding bid to write, for starters), I find myself thrown back into the mist every time I try to look into the sun. There are still more stories to tell.

Completing this series of blogs, there is Michelle‘s farewell, and then Michelle’s life to tell you about (I’ll share her eulogy tomorrow).

There may well be postscripts, too. I’ve learned more about life, death and intellectual disability in these past few weeks than I’ve learned in the past few years of research.

Michelle’s funeral was an exuberant, sad, uplifting, publicly intimate affair.

It had something of the home-spun about it. We did it ourselves, said Michelle’s friend Louise, with whom I carried Michelle’s coffin into church. It was a different church from the one where Carol’s funeral was held five days earlier, but here, too, there was standing room only. We sang our hearts out.

Michelle’s friends were many and spanned a lifetime.

Her oldest friend Janet (that’s not her real name) had shared Michelle’s life since they were both little girls. They grew up together in hospital, like sisters. So inseparable, in fact, that it was blindingly obvious to everyone (except perhaps the local council who had to fund it) that when Janet came to live in L’Arche London, Michelle had to come too.

Janet herself is now in the winter of her life, the days closing. It is difficult to know how she understood Michelle’s death (can any of us understand it?), but it was deeply moving to see her stand in front of her soulmate’s coffin, sing a song, say an Amen, then walk away with such dignity.

Janet at Michelle’s funeral

Michelle’s good friend from her L’Arche years, holding up a framed photo when we all gathered for Michelle’s “wake”, the evening before the funeral, telling stories, remembering. Remembering the friendship.

She was the best friend I’ll ever have. I’ll miss her.

Michelle’s friend shows us her treasured photograph

We weren’t sure whether anyone from Michelle’s family could make it, so we were astonished to see Michelle’s mother turn up unexpectedly early for the wake. Hers had not been an easy story. Like Carol’s family, she had to cope with leaving her small daughter in an institution – and then disappeared from the scene completely. In her L’Arche years, Michelle found “mummy” again, now living thousands of miles away. There were several jet-setting holidays to Canada and the States. Today, mummy is in her eighties and frail. To have made it across the ocean is nothing short of miraculous.

One of the friends missing from that evening of remembering was Colette, who had become so close to Michelle during the last few years in the Care Home.

(Colette’s story clearly struck a chord with you all – the blog post describing the conversation I had with her, the day Michelle died, has been seen almost 25,000 times on Twitter.)

I’d telephoned the Care Home several times, urging them to ensure that staff and residents came to this gathering, if not the funeral.

Even if they don’t want to stay, I explained. That will be fine. People will be wandering in and out, making noises, crying or laughing, it doesn’t matter. Please let Michelle’s friends come. Please let Colette come.

But Colette’s family was there. Her sisters, deeply moved by this messy, heartfelt, tender time of sharing memories and belting out Michelle’s favourite songs (Edelweiss! Michelle Ma Belle! You Are My Sunshine!), agreed. Colette should have been there.

They brought Colette to the funeral to following morning.

The funeral was both well-planned and spontaneous, with space for Colette to come forward with her sister. She gave an impromptu speech, with words that were strikingly similar to those of the friend the night before.

She was the best friend I’ll ever have, Colette said to everyone in the church, having wheeled herself right in front of Michelle’s coffin and facing us all. We do colouring together. She was my best friend. Jesus, look after her for me.

Amen, we said to that.

And then Colette’s sister, after sharing a few of her own memories of Michelle in the Care Home, turned to Michelle’s mother (whom she had met the evening before) and addressed her directly.

Now that I’ve met you, she said, I can see where Michelle gets her beauty from. Thank you for Michelle.

Was this the most moving moment of all these deeply moving days? I think it was.

I know how difficult it is, Colette’s sister said, to make the decision to send your child with disabilities to live somewhere else. I’ve seen how hard it was for my own mother to make that decision. The guilt. But look at all these people here. Look how amazing Michelle’s life has been, and how many people love her. That wouldn’t have happened otherwise. So please don’t feel guilty. Thank you for giving Michelle to us.

Michelle’s mother reached for her hanky. So did I. So did many of us.

These foggy days of funerals and farewells can (dare I say it) be a time of healing.

If we look death and loss in the face, if we can share our distress, our guilt, our if-only’s, but also our joy at having known and loved this person, if we dare to sit for a while in the new hole in our lives, then that really helps us. It’s helped me. I’ve explored the hole, so now I can recognise it. I’ll still fall into it, but I’ll know how to get out.

(Finding others who know the shape of that hole too. That’s how I get out.)

It has helped me to understand the lives of my two friends, Carol and Michelle, and to see how much sense those lives have made. How they are complete. Seeing that completeness, and indeed seeing how the very heartbreak of their stories are an essential part of the completeness, has also helped me. It is a comfort.

So I’m on a mission. In our recent Talking About Dying Surveywe asked support staff across the UK whether bereaved people with learning disabilities were involved in funerals.

We found that most people with learning disabilities now attend the funeral of someone close to them, but very few participate in them.

Even if it is the funeral of a parent, say. Very few people were involved in planning it, choosing songs or flowers, saying a few words, helping to carry the coffin. Few people with learning disabilities, it seems, are helped to take their place as principal and active mourners.

If you are not convinced that it is possible to include a very diverse group of friends and family in the rituals of farewell, do watch this short video of Michelle’s wake and funeral. Gloriously, it starts with a very short clip of Michelle herself, singing along to Edelweiss. We have been singing it a lot during these past few weeks…

…may you bloom and grow, bloom and grow forever.