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.
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.