Family carers: Doubly disadvantaged?

Featured article - 03 February 2021
By Dame Philippa Russell, Vice-President, Carers UK - and carer for her son Simon

Dame Philippa Russell, Vice-President, Carers UK - and carer for her son Simon

It seems that family carers like myself are doubly disadvantaged.

1. Key workers

Firstly we are in effect key workers, but although personal assistants and the full range of social care staff are specifically mentioned in the Government's National Vaccine Plan, unpaid carers are not! Most of us are now pretty much full time carers as well. Of course we are mentioned (Tier 6) in JCVI guidance and the 'Green Book'. But we are doubly disadvantaged if we (unpaid carers) support someone with a learning disability.

As the CEO of MENCAP said on the television yesterday: What criteria would we use to prove that someone has 'profound or severe learning difficulties'? And why say 'learning difficulties' - which could include dyslexia and a range of special needs which would not constitute significant disability? Public Health England talks about learning disabilities and my son Simon certainly has not only difficulties in learning, but he is also significantly disabled, with a range of co-morbidities.

2. Vaccinations

I also feel very concerned that all the focus has been on vaccinating care homes. Of course residents must be a priority and it is really impressive that so many vaccinations have been achieved. But many people with equivalent high levels of care and support needs (older people and people with learning disabilities) live in supported living, extra care housing etc. They have people going in and out all the time (if they are lucky!). I have had my first jab because of my age but if asked, I would have given it to Simon first.

Thinking of the mantra about saving the NHS (vital of course), I cannot imagine the impact on a busy Covid-19 ward if Simon was admitted. He would not cope without me or another trusted adult and the impact on the staff would be dire. I don't imagine I could be allowed in as a quasi-health assistant so the toll on Simon and the NHS would be huge. (I am pretty sure Simon would be admitted to hospital if he contracted Covid-19 because of his other health conditions). So, thinking of investment, an unpaid care like myself and Simon should be priorities for vaccination; that would make common sense.


And a comment on 'severe vulnerability' and other uses of the word vulnerability. Who defines it for conditions like learning disability? There are no national registers of people with learning disabilities (except in Scotland). Simon's GP does not know him, even in good times they rarely see each other. I think this issue about 'middle or higher levels of vulnerability' and definitions will rumble on and of course it does not only apply to learning disability. We could use the middle or highest levels of Personal Independence Payment as a passport.

Clearly the UK's vaccination programme is on a scale where some 'tweaking' or clarification will be needed as vaccinations are rolled out. But it would be very sad if some carers (paid and unpaid and providing crucial support) missed out on vaccination because they were not registered with a formal provider or agency. Many families are desperately worried about their relatives' vulnerability and it would seem sensible to look at what one of my son's former personal assistants described as 'freelance care and support'.

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