Helping people to take part in funerals. (There will be no funerals.)<\/p>\n
Helping people to visit sick relatives, to help care for them, to say goodbye. (There will be no visits.)<\/p>\n
Getting together to share the grief together. (There will be no getting together.)<\/p><\/blockquote>\n
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.<\/p>\n
For example,\u00a0Beating the virus<\/strong><\/em><\/span>\u00a0is an excellent new set of pictures from Books Beyond Words<\/a> for example, which tell the story of a woman who is ill with the virus and coping at home. You can download it here<\/a> 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.<\/p>\n One of the pictures in “Beating the virus”\u00a0<\/em>\u00a9BeyondWords<\/span><\/p><\/div>\n Let me keep you posted about things that I have been involved in. Here are two, for starters.<\/p>\n This is an article I wrote for Open Future Learning, drawing on my experience of “breaking bad news”. You can find it here.<\/a>\u00a0 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.<\/p>\n 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!).<\/p>\n The article was written in response to the publication of NICE guidance on clinical decision making<\/a> in hospitals (which COVID-19 patients should be referred to critical care?).<\/p>\n 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.<\/p>\n Janet<\/strong> lives on her own, but needs a bit of help with finances, transport, heavy housework and medications<\/em>.<\/span> She also needs a little help with shopping and meal preparation<\/span><\/em>.<\/span> Janet loves her hard-won independence.<\/p>\n Harry<\/strong> lives with a friend. He needs help with all outside activities and keeping house<\/em>.<\/span> His bedroom is downstairs because he has problems with managing the stairs.<\/em> <\/span>He also needs help with bathing and minimal assistance with dressing<\/em>.<\/span><\/p>\n Alison<\/strong> lives with her sister and is completely dependent for personal care, because of both physical and cognitive<\/em><\/span> 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<\/em>.<\/span><\/p>\n 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 <\/a>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 (\u201cfor example, CFS score of 5 or more\u201d), a decision should be made about whether critical care is appropriate.<\/p>\n The minimum CSF score is 1 (very fit) and the maximum is 9 (terminally ill). A score of 8 means \u201ccompletely dependent, approaching the end of life\u201d.<\/p>\n 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\u2019t 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.<\/p>\n Harry would score 6 on the CFS, and Janet would score 5. The text in red<\/span> is taken directly from the scale itself.<\/p>\n![\"\"](\"http:\/\/www.tuffrey-wijne.com\/wp-content\/uploads\/2020\/03\/Virus-Storyboard-B-16-717x1024.jpg\")
1. How do you talk about COVID-19 to people with intellectual disabilities?<\/h2>\n
2. Covid-19: \u2018The Clinical Frailty Scale is not suitable for use with people with learning disabilities\u2019<\/h2>\n
\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 <\/strong><\/h3>\n
Let me introduce three people with a learning disability: Janet, Harry and Alison.<\/strong><\/h3>\n
The Clinical Frailty Scale<\/strong><\/h3>\n