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

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

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

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

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

Here are some of the shocking figures.

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

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

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

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

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

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

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

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

All I have now are questions. WHY and WHAT?

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

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

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

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

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

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

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

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

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

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

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

The brave new world of webinars, podcasts and Zoom

Nothing like a pandemic to shine a light on inequalities.

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

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

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

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

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

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

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

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

PCPLD Network Conference in London (2018)

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

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

Well, how about this.

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

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

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

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

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

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

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

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

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

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

My top tips for webinars

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

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

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

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

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

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

3. Think carefully about your webinar content.

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

We are planning more webinars!

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

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

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

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

So watch this space. And join us!

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

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

We need stories and we need numbers.

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

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

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

Stories plus numbers should lead to action.

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

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

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

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

That same catastrophe also threatens people with learning disabilities.

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

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

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

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

Vulnerabilities

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

People with learning disabilities:

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

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

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

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

Testing please

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

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

Numbers please

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

The LeDeR programme

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

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

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

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

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

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

The Care Quality Commission

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

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

NHS Covid-19 daily deaths

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

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

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

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

Moral of this blog post:

  1. Tell the stories.

  2. Count the numbers.

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

  4. Start working out what it all means, and

  5. Take action, based on all available evidence.

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

  1. STAY ALERT.

  2. CONTROL THE VIRUS.

  3. SAVE LIVES.

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

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

Nothing like a pandemic to shine a light on inequalities.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So, the whole nation is learning fast.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Coronavirus and people with intellectual disabilities

The coronavirus is turning our lives upside down.

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

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

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

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

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

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

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

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

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

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

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

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

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

                 

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

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

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

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

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

The Clinical Frailty Scale

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

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

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

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

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

People with learning disabilities and end of life decisions

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

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

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

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

L’Arche, Jean Vanier and revelations of abuse: The tasks of mourning

The shock waves are continuing to send ripples around the world.

There are so many people, those who are connected to L’Arche but also those who are not, who have been profoundly shaken by learning that Jean Vanier (L’Arche’s respected, revered, beloved, inspirational, charismatic founder) had been abusing at least six women, sexually and spiritually, as recently as 2005 and stretching back decades.

I lived in the L’Arche London community between 1985 and 1992 and have been a member and close friend ever since, but for many years now I have been quite peripheral. I live fairly nearby but have a job, a family, and many activities that have nothing to do with L’Arche. Sometimes months (and dare I say years) go by without being very much in touch with my friends there.

So the level of my distress and exhaustion is taking me by surprise.

I haven’t been in my L’Arche London community since last week, so haven’t witnessed the most recent reverberations of the sledgehammer-level-shock, but I know I am not alone in this.

This is the #MeToo era in which we are, thankfully, much more aware of how widespread sexual abuse is, how it can (and does) happen anywhere, how at risk people are of being abused, how dangerous it is to have power and to sit on pedestals. But somehow, Jean Vanier always seemed to be a sign of hope in a difficult world. And as my 16-year-old daughter said, when all this exploded two weeks ago: The brighter the light, the bigger the shadow.

It helps that the world beyond L’Arche seems to agree that this is, indeed, Big and Bad. That validates our shock. I’ve had lots of supportive comments following my previous blog posts, and in particular following last weekend’s interview on BBC Radio 4 Sunday programme (if you missed it, here is the sound clip).

Even better, listen to the people from the L’Arche Toronto community, in particular Stacy Gilchrist who said:

He touched women’s bodies. It was wrong. He was very bad, and he was naughty… I got so angry about him. I’m not going to talk about him again.

I have been pondering the analogies with death and bereavement, and that continues to help us.

This is as bad as a death, I thought.

Or is it worse??

As is so often the case, it was someone with intellectual disabilities who hit the nail on the head when the two of us talked about this. We were remembering the times when one of our friends had died, and we all got together on the evening of the death, to share our shock and distress. Wasn’t it good that we could get together like that, that Saturday afternoon when we heard the bad news about Jean Vanier? He said:

Well yes, BUT… at least when Michelle died, we could say nice things about her. And have good memories.

And that’s just it, isn’t it? He is right. Jean Vanier’s death last year was easier, because we could celebrate his life. We lost the man, but not our relationship with him, not our memories, not his legacy. Now, it seems, we have lost all of that.

When Michelle died (and some of you may have followed the story of how we coped with her death last year) we could mourn and yet celebrate the wholeness of her life.

Mourning Michelle’s death together (February 2019)

Now we can only mourn, because how do you celebrate broken pieces?

The tasks of mourning

I don’t really know how we are going to get through this, but perhaps it will help us to take some further cues from the analogies with bereavement. As it happens, last month I wrote about Helping people with profound intellectual disabilities cope with bereavement.  I just re-read it, and I am struck by how useful it might be to think about all this as Grief Work (now wonder we’re exhausted! It’s WORK!) and the Four Tasks of Mourning.

These four tasks were described by William Worden in his book Grief counselling and grief therapy. It was first published in 1983 and has gone through several adjustments, but I still find it very useful and relevant. So I’m going to share it with you again and think aloud about how it might help us now, in L’Arche.

Remember, grief is unique to all of us and will be different in all our different communities. Remember, too, that there are many theories about grief and how to help. This is just one of them – you can take it or leave it.

I am going to take it as truth that our L’Arche communities have suffered a loss and are mourning.

Worden suggests that there are four tasks that we must work through and accomplish, before mourning is completed and an equilibrium is re-established. (Hard to see now what kind of equilibrium that might be, but it is quite clear that we have work to do!)

Here are the four tasks.

  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

These are in no particular order, although there is a bit of logic to the way this list is arranged. As you will see later, it will be quite hard to find a new and enduring connection with Jean Vanier, unless you have started to accept the reality of the loss. And we may need to go back to the tasks over time. Grief is not a linear path. It’s more like a labyrinth.

Here are my reflections on how this might apply to our situation in L’Arche, where we have to come to terms not with the death of our Jean Vanier, but with his fall from grace and the shattering of our founding story.

Task 1: Accept the reality of the loss

On one level, this is fairly simple. We need to tell each other the news, as clearly and simply as possible (which is exactly what we did when the news broke). We need to repeat it. We need to talk about it with each other, with our friends, even with strangers. It needs to sink in. We need to begin to understand it. Those of us who can read, have not only read and re-read the 11-page summary report but also the articles, blogs etc. that have been shared online. All this is helping us to realise: This Has Really Happened.

(I’m not saying “accept” yet, but before we can accept it, we have to believe it.)

As an example: It is surprisingly helpful to explain the whole difficult story to people who know nothing about it. I’ve done it quite a few times now, and each time I’m telling it, it becomes more real. I am slowly getting used to the story.

On another level, this task is complicated. Because what is it, exactly, that we have lost? What is the significance of the loss?

We may be inclined to diminish it (He was only one man! L’Arche is bigger than its founder!) or we may diminish the importance and relevance of Jean Vanier in our own lives.

I find myself doing both: “I never did get through any of his books. I believe in the founding principles of L’Arche, the stuff around equality, but always found the whole spiritual explanations of it quite difficult. And anyway I didn’t know Jean very well, personally. So what does it matter?”

Yet I know, on a profound level, that I have lost something. Understanding what that is, is part of the task I’m working on at the moment.

We will have to do some of this together (because some of what we have lost is true for all of us), but we also have to find, name, accept what each of us, individually, has lost. This can be wide-ranging. A loss of trust. Of innocence. Of aspects of our spiritual lives and understanding, perhaps even of faith. For some, perhaps, especially those who have suffered abuse themselves, a loss of certain coping strategies (maybe trying to forget or block out the demons of the past). For some, especially those who counted Jean as a friend, a loss of love and a tainting of memories.

Blimey, this is going to be hard.

Task 2: Working through the pain of grief.

We’ve definitely started work on that one. The “pain of grief” will mean something different for different people, and there is no right or wrong here. Put simply, this is allowing ourselves and each other to feel all the different feelings associated with grief. This can range from feelings of anger, despair, sadness, loneliness and fear to feelings of shame, blame, guilt, or relief. It’s a long and non-exhaustive list.

The best thing we can do is to acknowledge these feelings. Talk about them. Share them. Create space for them. The worst we can do is to try and move on as quickly as possible, or to put a time limit on them. I don’t want anyone to say, in six months’ time: Surely you must have got over it by now? Isn’t it time to move on? The pain of grief never completely goes away. It’s OK to feel pangs of it, even years and years later.

The least helpful thing someone has said to me in this past week was what I heard (rightly or wrongly) as: How on earth can you be so extremely upset about this? Shouldn’t you know better? Why does this come as such a surprise?

The most helpful have been those who have listened, and nodded, often in silence: Yes, of course. I can see that this is deeply upsetting. You are right to be upset. (That includes many of you, reading this. Writing these blog posts, I realise now, is one way of sharing the pain of grief.)

People who are working through the pain of grief need no explanations, no justifications, no efforts to try and make things better.

Task 3: Adjust to a world without the Jean Vanier that we knew

This, too is going to be hard. Thinking about it at the level of local, national and international L’Arche communities, it means that we have to understand what the relationship was with the founder, and how this affects the way we live now. We need to understand not only what we have lost, but also what we have NOT lost… and even what we have GAINED.

I really believe that there is hope here. It may seem strange to talk about gain, and I don’t quite know or understand what it is – I think it will be a while before we can even start focusing on this task – but I can smell it. How else to explain the fact that I have never, in all my 35 years as a member of the L’Arche London community, felt as much unity, as much being part of the community as I do now? Not just our London community, but our communities worldwide? It is a unity I feel even with people outside L’Arche, people in my choir, in my local church, at work, strangers responding to my blog posts: I am convinced there is something we will find, and move forward with, that does not need to include the charismatic founder. Perhaps it is better without him, even.

In task 1, it is unhelpful to say that L’Arche is bigger than its founder. Here, in task 3, it might be extremely helpful indeed.

This task also includes adjusting to a new spirituality, a new vision, a new way of understanding why we live the way we live. We need to find confidence in a new way of understanding our world, and that has many different levels: spiritual, practical, individual, collective.

It also must, absolutely and without question, include a new openness and honesty. About sexuality, about abuse, about power, about the connection between spirituality and daily life. And it must include the most stringent safeguarding procedures and practices that we can think of. I’m glad that L’Arche International has already started serious work on this aspect of task 3.

Task 4: Find an enduring connection with Jean Vanier

For many of us (including myself) this is almost too difficult to contemplate right now. We may not be ready to work on it for a long, long time. Yet, if Worden is to be believed (and I think I do believe him), we cannot find our new equilibrium unless we find peace with the memory and legacy of Jean Vanier. Before we can do that, we have to truly accept the terrible things he has done, as part of our founding story. We have to understand how it has been possible for L’Arche (much of which really is very good) to grow from such a terrible story. We have to accept, really deeply accept, that our true founding story is far from charming. That there is no pedestal. We have to let go of the saint and welcome the sinner. And a terrible, terrible sinner at that.

This task is quite difficult to get our heads around (and it is the one that Worden himself kept re-phrasing and re-framing in the different editions of his book). But the crux of it is that the relationship between L’Arche and Jean Vanier, and between individuals and Jean Vanier, was so important that we cannot move forward and live well unless we give that a place in our lives, and in the story of our communities. We cannot, and should not, erase Jean Vanier.

But I don’t quite know how to do this, and perhaps it is too early. Some people in our community (and this includes people with intellectual disabilities especially) have found it in their hearts to pray for Jean Vanier. Perhaps forgiveness comes into it. But I can’t do that yet, because I haven’t even started properly on task 1 (remember? Accepting the reality). And nobody should be “taken to task” on this one.

Especially not the victims of abuse.

Please don’t take any of this as guidance (and definitely not as gospel truth).

I have, quite literally, been thinking aloud. I’ve written this without thinking it through. You can use it as something to think about and perhaps talk about. I would be really interested to hear your thoughts and your suggestions. Let’s keep sharing the many different ways in which you (and your communities) are coping with all this.

We are gathering to support one another: Coming to grips with news of Jean Vanier’s sexual abuse

This is what we did yesterday, us shell-shocked people in L’Arche London.

We gathered. We heard the news again. We talked about how we were feeling.

And we ate pancakes, as is traditional in England on the Tuesday before Ash Wednesday.

I have been utterly taken aback (and heartened) by the response to my previous blog post.
How to break bad news of sexual abuse by someone you trusted?

It seems that the analogies with death, and how we process things when someone dies, has struck a chord with you all. So, in the spirit of learning together, let me continue to share what is happening within our L’Arche London community. What worked for us might also work for you, or it might help you to think what the best way forward is for your own groups and communities. Or it might simply help you to be part of our London community, and communities across the world, struggling to cope with it all. This is too big to cope with on your own.

It seems that the simplest of scripts have the most powerful impact and the widest resonance, not just for people with intellectual disabilities, but for all of us.

We used the same script as we did on Saturday, but we did add something to it. In the past, gatherings like this (bad news, people upset, etc) has been about death, and some people with intellectual disabilities may have wondered who died. So, the community leader started thus:

We have some important news to share with you.

Nobody has died. Nobody here has done anything wrong. The news is about Jean Vanier.

Some people will have heard the news already. That’s OK. We will say the news again. You can hear it again. Some people have not heard the news yet. That is also OK. We will tell you the news.

Quite a useful script, I now realise. Because likewise, you (reading this) may have heard the news already – or perhaps this blog post is the first time you’re hearing and reading about it. Both are OK: I’m telling you again. (You can also read my previous blog, of course.)

Jean Vanier was the person who started L’Arche. He did many good things and we are grateful for that. Last year he died.

We have now learnt some things we did not know about him.

Six women told us that Jean Vanier has hurt them. These women said that when they were meeting Jean Vanier alone, to talk about their spiritual life, he touched them in a sexual way. He abused them.

They did not want this. They did not like this. It upset them. (…) This news shocks us.

We had two meetings yesterday (to make sure most people could attend at least one of them) that were open to everyone, regardless of how long they’d been in L’Arche, or indeed what their relationship with the community was (parents, friends, neighbours, as well as current members, with and without intellectual disabilities).

We had thought that we should, perhaps, explain a bit more about the news this time. After all, most people had heard it three days earlier. We’d had that extraordinary meeting on Saturday.

So we wrote a longer script, kindly sent to us by another L’Arche community. This explained everything in 25 easy sentences (it had pictures as well; we printed it out so people could follow it on paper). We used it for the first of the two meetings.

It didn’t work. Even that easy-read version was just too much information. It tried to do too much:

  • Explain that there has been an investigation
  • Explain the history of Jean Vanier with Fr Thomas, with whom he started L’Arche in 1964
  • The Catholic Church had investigated allegations of sexual abuse by Fr Thomas
  • The Church believed them, and banned Fr Thomas from any kind of ministry
  • This inquiry was partly to investigate how much Jean Vanier had known about it
  • Then more women came and said that Jean Vanier had done some of the same things as Fr Thomas in private prayer meetings
  • L’Arche believed them.

Etc. Are you lost already? Is your brain working to take all this in? We found it was just too much to get our heads around. I found myself listening but switching off halfway through, whilst the community leader herself struggled to get through it all. Many of us needed to know these details, and that included some people with intellectual disabilities; but they needed more time and space (and perhaps in a smaller group, or simply in pairs) to read and hear and think about the details.

So, in the second meeting we went back to our initial script, which was based on this question we had asked ourselves:

What exactly is the bad news here?

All breaking-bad-news conversations should be based on that question. What is it, precisely, that makes this bad news for anyone? What is it about this long and terrible story that people most need to know?

For us in London, it was this:

Jean Vanier, a man we admired and loved and trusted, has sexually abused women. That is really, really bad and wrong. It is shocking and upsetting.

This affects us in all sorts of different ways. The triggering of people’s own stories of abuse. The breaking of trust. Our own self-image: something we have believed so strongly to be true, something we may have based our lives on, turns out to be wrong and false. Or we may simply be concerned about the future of the L’Arche community, or the tarnishing of spirituality and many people’s connection with their church.

It was also important to make it very clear that L’Arche believed the women and wanted to support them.

Underlying message: It doesn’t matter how important or powerful people are; if they do bad things, we need to stop them.

Again, as at our first meeting last Saturday, the community leader said the news twice. Slowly. This means I (and many others who made it to all the meetings) have heard it six times now.

It’s amazing how helpful that is. For something this shocking, it takes such a long time to sink in. It also helps us to SAY it to each other, again and again: This is what happened. How awful. Listen to this:

Six women told us that Jean Vanier has hurt them. These women said that when they were meeting Jean Vanier alone, to talk about their spiritual life, he touched them in a sexual way. He abused them. They did not want this. They did not like this. It upset them.

And again, listen everyone:

Six women told us that Jean Vanier has hurt them. These women said that when they were meeting Jean Vanier alone, to talk about their spiritual life, he touched them in a sexual way. He abused them. They did not want this. They did not like this. It upset them.

And again. And again.

The analogies with death are so strong.

How many of you have this experience? You have heard that someone you loved has died. Then you have to tell the news to someone else. Saying “My friend has died” is incredibly hard first time round, because it makes it real.  You have held yourself together (just), but when you tell someone else, it hits you hard. You may not even get to the end of your short sentence without crying. By saying it out loud, you make it true. Every time you say it afresh, it’s a little bit more true.

He has died. He really has died. It really happened. I can’t believe it. He has died. He has died.

We cry when we say it, but that’s exactly why we need to say it. That’s how we make sense of things.

I am full of admiration and gratitude for our young community leader, who had to do this: read it six times, slowly. Hearing terrible news spoken out loud, in the simplest possible way, was so important. I am grateful for the presence of people with intellectual disabilities in the group, because they forced us to simplify the message, and that helped all of us. It’s so easy to get caught up in complex thoughts, rationalisations, trying to find answers, but really, we first need to acknowledge the ESSENCE of the bad news, at the simplest level, which is also the deepest.

We then had a minute or two of silence, to stare at a candle flame and think about what we had heard.

This was extraordinary. The second meeting was the busiest, because people had finished their work and other activities, so many people with intellectual disabilities were able to come, as well as many assistants and friends. There must have been around 60 people in the room. And it was… silent. The quality of that silence was profound.

Imagine that: a large group of people, including people who find it very hard to be quiet. People who don’t use words and would not have understood what had just been said, who would usually be loud with excitement because they like it when everyone is together; people who find it hard to sit still and are often noisily anxious: all of us were quiet.

It was an almost physical sensation of bad news sinking in just that little bit further.

The next thing we did was split up in small groups of around six people.

We made sure these were as mixed as possible; each group should have people with intellectual disabilities, new people, and people who had been around a long (often very long) time. In these groups, we took it in turns to answer the following question:

How does the news about Jean Vanier affect me personally? How does it make me feel?

This was something the Canadian communities had shared with us, because it had worked well for them. (Quite marvellous how strong the sense of international unity is at the moment, with communities across the world trying to cope with this and sharing their hints and tips.)

I’m told this is based on Restorative Justice techniques. It worked like this:

  • Sit in a circle of 15 people or less.
  • Each person in turn shares as little or as much as they like, or they can choose to remain silent.
  • Others simply listen. No questions, no comments. Then the next person shares.

Because I went to both meetings, I did this twice. I thought the mixed groups were extraordinarily powerful.

Earlier, we had also gathered with around 20 long-term assistants, where we did something similar (so in fact I did the sharing-in-a-circle three times), and that too was powerful, because of the painfully (sometimes tearfully) honest sharing of raw feelings.

But I liked the mixed groups because of the strong sense of sharing this with the entire community, and the affirmation that there really is no hierarchy of distress. We cannot assume that new, young assistants who never knew Jean Vanier and have never read his books, are less upset or affected than the rest of us. They too are allowed to cry, and did, for various reasons that may not have been clear even to themselves.

And how about understanding? It was so clear that many people with intellectual disabilities were able to understand. Some people understood the detail and were deeply distressed by it, but also displayed extraordinary maturity. Their comments were to-the-point.

What on earth did he do that for??!!

That just about sums up the total bewilderment we all feel.

I talked to him! I sat next to him! I can’t think of that now! Why did I do it!!

So very important to stress it again: YOU did not do anything wrong.

They weren’t alone in thinking like this. We are all questioning ourselves. We loved Jean, in different ways – the person; the writing; the teachings; the example. Were we wrong? How could we be so very wrong?

Then there were people who didn’t speak, but who comforted us. One woman went round distributing hugs to those who really needed it most (the community leader, the people carrying the burden of supporting others). I didn’t know her very well, but she singled me out for a wonderful back rub. I hadn’t quite noticed how much my shoulders were hunched and aching, and how much of a burden I was carrying, but she had.

I cannot share in detail with you what people said in those groups, but the source of people’s distress was wide-ranging. Listening to each other was partly devastating, partly reassuring. I am not the only one. Me too, me too. YES! Now that you are saying it, I relate to that too.

The nightmares people described. Falling off cliffs, repeatedly. Being stuck in mud, unable to move your feet.

The stomach cramps, painful shoulders, headaches.

Let me just invite you into the circle and share with you some of my own feelings and reactions.

Being busy, thinking and talking through how to manage the situation, helping to plan these meetings, even writing this blog: call it a coping mechanism. At least something I can feel in control of. I thought I was doing OK.

Then, on Monday night, I went to the weekly rehearsal of my chamber choir. Great, I thought, that will be good, a bit of singing, good for the soul, it’ll take my mind off things. No such luck. This term’s repertoire consists of French songs, including several devotional songs about the Virgin Mary. It was when singing about Mary and Jesus, in French, that I was hit unexpectedly by a wave of nausea and unwelcome, intrusive images of the abuse suffered by the women. Snippets of the Summary Report that were so terribly devastating, the voices of the victims:

  • He said: “This is not us, this is Mary and Jesus. You are chosen, you are special, this is secret.”
  • When I expressed my astonishment saying (…) how could I manifest my love to Jesus and to him, he replied: “But Jesus and myself, this is not two, but we are one. (…) It is Jesus who loves you through me.”

I had to run to the toilet for some powerful retching. There is no way I could stay for singing Sainte Vierge Marie, priez pour nous. (Dear choir master, if you read this blog: I apologise for my sudden, unexplained departure and can only hope that you have your alto back in time for the concert.)

What is shocking to me is the strength and physicality of that response, from me, someone who has never been abused – sexually or otherwise – and who only knew Jean marginally. My heart bleeds for the victims, for all victims of abuse. I am devastated for you all. I am furious with Jean.

I am also furious, absolutely furious, with him for ruining my love of that sacred music. I am furious for the way in which thinking about Jesus and Mary now leads me to think of his manipulative abuse.

Thank you, I said to the man who had exploded in anger on Saturday. Thank you for saying those swear words. Because it made me feel that it was OK for me to think them, too.

And I do, oh I do feel them.

The parallels with death really are strong.

As several people said: Jean died last year, but this is like a second death. And this is worse, in so many ways. Because we have not only lost the presence of the person we loved and admired, but also our image and admiration of him, and our love. Last year you could be forgiven for thinking we buried a saint. This week, we are wondering how on earth to bury the broken pieces. The saint has well and truly crashed down from his pedestal, and shattered, and we are staring at the pieces in absolute bewilderment.

What we need to find out over the coming weeks, months and years (I’m sure it will be years – grieving is long-term work) is this:

  • What exactly have we lost? What do we need to bury?
  • And what is it that we have NOT lost? What is L’Arche? What can we hold on to? What is our truth?

There is a silver lining to all this. Or at least I hope there is. I can see a glimmer of it, and it is this: the opportunity this gives all our communities to grow up. To see that L’Arche is bigger than its founder. To be stronger, and to survive, and not to be dependent on any one person. To understand much more profoundly the power we have over each other, and how dangerous that can be if it goes unchecked. How dangerous it is to put people on pedestals.

I am also heartened and hopeful, because paradoxically, in all my decades in L’Arche, I have never felt the strength and unity of our communities as much as this week. Plus, the support and encouragement received from people outside L’Arche has been so amazing. The recognition that yes, we have lost something huge, but we have not lost ourselves.

As some people so helpfully said (and these are all words from people with intellectual disabilities):

I love L’Arche. We have to remember all the good that L’Arche has done. All the good people who have been in L’Arche and then gone and done other things all over the world, good things. Lots of good things and good people have come out of L’Arche.

Thank goodness for our diversity.

Some of us respond with our heads first, some with our hearts, some with our bodies. If you are out there, struggling, confused, angry, sad, whatever: Welcome to the club.

How to share bad news of sexual abuse by someone you trusted?

Here is some seriously bad news. A man who was loved by thousands, respected by millions, a man who has inspired people across the world and who has articulated values that so many people (including myself) have taken to heart – that man turns out to have been a serial sexual abuser.

Jean Vanier (1928-2019)

Jean Vanier was the charismatic founder of the L’Arche communities (1964), where people with and without intellectual disabilities share their daily lives in a spirit of friendship and recognition of each person’s unique value. He died last year at the age of 90. His funeral was broadcast across the world.

Jean Vanier was a universally respected leader whose example, teachings, talks and books about community, disability and inclusion transformed lives. He was a spiritual man who was welcomed, celebrated and loved everywhere – from popes and queens to people with profound disabilities. It wasn’t long after he died that there was talk of canonisation. Saint Jean.

So when news of his sexual abuse hit the headlines yesterday, it hit us – members of L’Arche communities all over the world – like a ton of bricks. The detail is distressing.

To its enormous credit, L’Arche International had commissioned an external agency to conduct a thorough and independent investigation. Yesterday, L’Arche International released their comprehensive summary report and unequivocal statements of shock and condemnation. I won’t repeat it all – you can click on the links yourself – but it does not make for pretty reading. The evidence is strong and compelling, leading L’Arche to affirm a number of things, including these horrific facts:

The inquiry received credible and consistent testimonies covering the period from 1970 to 2005 from six adult women without disabilities… The women each report that Jean Vanier initiated sexual behaviours with them, usually in the context of spiritual accompaniment. Some of these women have been deeply wounded by these experiences. Jean Vanier asked each of the women to keep the nature of these events secret. They had no prior knowledge of each other’s experiences, but these women reported similar facts associated with highly unusual spiritual or mystical explanations used to justify these sexual behaviours. These actions are indicative of a deep psychological and spiritual hold Jean Vanier had on these women.

This news affects us profoundly.

Many of my friends (including people with intellectual disabilities) have known and loved Jean Vanier, some for many decades. I respected him. I didn’t know him well (although I once co-facilitated a retreat on Death & Dying with him, in the tiny French village of Trosly-Breuil, the first L’Arche community).

Learning of Jean’s sexually and spiritually abusive behaviour makes us feel deeply betrayed, sickened, confused, ashamed (how could this happen under our noses? Are we ourselves tainted by implication?). Distressed beyond words for the women who suffered.

I can tell you much more about this, but what I really want to focus on is Breaking Bad News. How do you share this news with everyone?

It should be my comfort zone. Haven’t I written a book called How to break bad news with people with intellectual disabilities? The leaders in L’Arche London, who had been given the news in advance of the press release so they could prepare and support their communities, certainly thought so. A few days ago, they asked my advice.

This was going to affect so many people in so many different ways. The shock and betrayal. The breaking of trust. But also the echoes: many people in L’Arche have themselves been victims of sexual abuse. As with a death, when painful memories of previous losses are forced to the surface, news about sexual abuse is bound to evoke people’s own memories of being abused.

Do we tell everyone together? Individually? Separate meetings for those with and without intellectual disabilities?

And crucially: how to explain? What words to use? How much detail?

It was clear to us that NOT talking about it was not an option. As with death and dying, a conspiracy of silence (for whatever reason, including He won’t understand  or It will be too upsetting) would not only be dreadful; it is exactly the conspiracies of silence that make it possible for abuse to continue. So, yes, we need to talk about this with everyone. Including people with intellectual disabilities.

But nobody knew the script. There was a letter and video from the international leaders, which was very good and honest and painful – but rather wordy (and partly in French). Suitable only for those of us who understand long words (and even then, it was hard to take in at first). There was a series of 18 graphic drawings, trying to explain the investigation and its findings in easy-read format. Whether we used these resources was up to us.

In the end, this is what we did…

(And I’m sharing this here, because I think it was the right thing to do, and it might help other people and other organisations.)

I had no idea how to break bad news of sexual abuse by someone we admired and loved. But one thing I do know: L’Arche deals with “death and dying” better than most. (In fact I can’t think of anywhere or anyone doing it better.) When somebody dies, we have a pattern, rituals, ways of sharing and talking and experiencing that has developed over decades, and it is brilliant. It is open, honest, direct, both about the facts and about the emotions.

Could we harvest that wisdom now? I found that we could. Here was some really, really serious bad news that most of us had not expected, and that affected us deeply. What would we do if somebody had died? This:

We all gather together immediately, on the day of the death. We share the news simply. Our friend has died. We are sad and upset.

We think about the friend. We cry. We can’t believe it. Crucially, this is a community event, and no-one is excluded. Not everyone understands what death is, but that doesn’t matter. We all understand distress. At that first gathering, we share and absorb the shock together. This is not the time to start explaining exactly what death is, or how our friend has died (although if anyone wants to know this, we tell them).

So that’s what we did. We simply called everyone together, so that we could be hit by the bombshell together. We did not exclude people with intellectual disabilities from this, because if you tell the assistant teams first, you deprive people of the chance to see how upsetting this is for everyone, and of the chance to be supported AND to offer support (as you will see later).

We decided against using the video and the 18 pictures. As with a death, that first meeting is not the time to start explaining (in simple words, pictures or otherwise) what sexual abuse is. If people don’t understand this, they do not need to understand it immediately. What they need to know is that something upsetting has happened, something serious, that affects and upsets everyone around them – including those that help them in their daily lives. Those who do need to know more (and many did; there were many questions) were given the full report afterwards; some of us watched the video together afterwards.

Unfortunately, the news got to the press earlier than anticipated. It hit the headlines yesterday morning (Saturday), unexpectedly. We thought this would happen on Tuesday, so that’s when we were going to have our big bombshell meeting.

More phone calls. What to do? It’s the weekend! Should we meet with everyone on Monday?

Again, it helped me to think through the analogies with death. What would we do if there was an unexpected and sudden death? On a Saturday morning?

We needed to come together immediately. We did not want people to hear this, and wonder about this, and not be able to share it together for several days.

The community leaders told all their members, current and past, and some important long-term friends, to come along for an important meeting in a couple of hours’ time. I was on a rare weekend away with my husband, but jumped on a train back to London. As you would when somebody has died. It was as big as that.

A few hours later, I looked around the packed meeting room. Like me, others had dropped everything. There was the founder of this L’Arche London community, along with other founder members who have been around for over 40 years. There were the newest members. The local priest. Our long-standing neighbour and friend, now in her 80s, who recently buried her husband and had asked the mourners to make donations to L’Arche. A few parents of people with disabilities. People who don’t understand words, and people who do. For late-comers, it was standing room only.

That is the one positive element of my sorry tale. I looked around the room – we all did – and we knew exactly what our community leader meant when she said: This is community. I LOVE this community!

This is what the community leader said at the meeting.

I can tell you verbatim, because we made a script. This was too difficult, too unprecedented, to do off the top of your head.

We have some important news to share with you. The news is serious. You may find it difficult. Would you like to take a minute to look around you and make sure that there is someone near you who can support you? – someone you feel comfortable with. I am going to wait a minute to give you some time to make sure you have someone to support you next to you. You can move around and sit near someone who can support you.

She waited for people to do this. Then she said this, slowly.

The news is about Jean Vanier. Jean Vanier was the person who started L’Arche. He did many good things and we are grateful for that. Last year he died.

We have now learnt some things we did not know about him.

Six women told us that Jean Vanier has hurt them. These women said that when they were meeting Jean Vanier alone, to talk about their spiritual life, he touched them in a sexual way. He abused them.

They did not want this. They did not like this. It upset them.

L’Arche says very strongly that what Jean Vanier did was wrong. Our community says that what Jean Vanier did was wrong. We say that what Jean Vanier did was wrong.

L’Arche International is working to make sure everyone in l’Arche is safe. Our community is working to make sure everyone here is safe. We are working to make sure that nobody will sexually abuse anyone. We all need to be safe. Safe and respected.

This news shocks us.

And then she said exactly the same words again. Hearing it once is not enough.

We took some time to talk to each other in pairs, in small groups. We came back to the big group and some people shared how they felt. There were tears.

I was deeply moved by the response of some of the people with intellectual disabilities. Whilst many of us tried to process the news in our heads, one man articulated his feelings more accurately than anyone else. When he heard the news, he exploded. Both his shoe and his chair suffered some light damage.

He’s a dirty old bastard! I thought I could trust L’Arche!

He wasn’t sure whether he wanted to stay in L’Arche now, because if you can’t trust the great Jean Vanier, then who can you trust?

But sharing all our distress together helped him not only to process the news, but to show maturity:

He is a dirty fucking bastard… But I’m glad I’m in L’Arche. We need to look after each other.

And turning to a long-term assistant:

How are you? You knew him for so long. This must be really hard for you.

This is also one of the positives of my sorry tale. The confirmation, yet again, that we do not just support people with disabilities: we all support each other, and they need to be able to support us. We were not alone in our anger and in our questioning. The long-term assistant could tell him that she, too, was furious with Jean.

We took some time to be silent. We said some prayers, sang a song (what to sing? Honestly, we could all do with a proper script for this kind of thing!)

Then we drank tea and ate biscuits. Some of the long-term assistants stayed to talk and share some more of our feelings. A few people who couldn’t make it had joined the whole thing via video-link.

And we decided that on Tuesday, we will meet again as planned, and we will do the whole thing again. Quite a few community members couldn’t make it; they need to share in this. And many of us who were there, wouldn’t mind hearing it all again. Difficult news doesn’t sink in all at once.

I don’t know what will happen next, or how we are going to work through this.

There will have to be many more meetings, together and in small groups. We will need to look at the detail, understand it, absorb it. That takes time.  I’ve read the report three times now, and each time I am even more deeply shocked, because the gravity of what has happened is sinking in.

We will need to come to terms with a new version of our history, and for many of us, with memories of abuse.

But I do know that the best thing, the only thing, is to be utterly open and transparent. To look at painful dark things, examine them, expose them. I am relieved and impressed with L’Arche, nationally and internationally, for its determination to do this. There should be no more secrets. It must have been so hard for these six women to share their experiences, and we are devastated for them, and grateful to them.

I am grateful for the determination of the L’Arche international leadership, who said in their letter:

The words of those who have testified bring to light a troubled part of our history, but they give L’Arche the opportunity to move forwards with a better understanding of our history and, ultimately, better equipped to face the challenges of our time.

Let’s hope so. When I first heard the news, I despaired. But I looked around at all these people yesterday, who had gathered at the drop of a hat, and I have real hope there is a future for our communities.

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.

©booksbeyondwords.co.uk 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: https://whatmattersdorset.org/projects

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!