As the sister of someone currently living in a UK care home, I wanted to lay out a few #COVID19 worries. My sister is severely disabled, and was hospitalised with pneumonia last year. She is currently in a 'locked down' care home.

1) It's thought likely that she would not be offered an ITU bed, or, in fact, any bed in hospital if she gets Covid. Lots of leaked documents support that fact. And yet there seems to be no guidance about what care she should have instead. 2) Her care staff do not have proper PPE

3) Her care staff are not trained nurses (obviously) and yet it seems they would be required to attend to her if she was poorly. 4) The GP surgery have said they would not be able to send a doctor or a nurse to help the carers if she was sick. Phone or vid calls only.

5) So - what end of life care / other treatment could my sister and others like her expect? I have no idea. Would they get her oxygen? Antibiotics? Morphine? 6) If my parents decided to bring her home instead of keeping her there (which I would support) they would most likely

catch it too. They are both over 70, and my Dad has diabetes. No-one would come to help them, as far as I understand it. So then both my parents and my sister could potentially have Covid, and be very very sick, stuck at home with no help. This possibility keeps me awake at night

What would I do? Most likely, leave my kids and my husband and go to try to help them all. But if there was a proper plan for care of our vulnerable in care homes, with proper shielding and PPE, this scenario might not come to pass. I pray a plan is put in place, and people like

my lovely sister, Clare (who is only 39), are not forgotten. #disability #Rettsyndrome Laura Kuenssberg #carehomes Hugh Pym

Rett UK Mencap I have responded to Victoria. Hope that they all reached her. I have tried to be as honest and frank as I can. It is all concerning and all these issues need to be addressed, and preferrably collectively.

Health Minister Edward Argar says he and Helen Whately MP will look into the report on #BBCBreakfast that shows there have been nearly three times more deaths in care settings, where people with #learningdisabilities may live. Watch the full report here: bit.ly/2Lqvg9x

‘We have been given a glimpse over these last few months of what it is like for people with disabilities’ – actor Rory Kinnear channel4.com/news/we-have-b…

No it’s not right. And where are children with complex health nerds mentioned? #vax4vulnerable

Open letter to Matt Hancock, please prioritise children, young people and adults with complex health needs at increased risk of mortality! @ReverseRett BDFA Sense Embracing Complexity #Vax4Vulnerable @BnsJaneCampbell and NHS England rettuk.org/open-letter-to…

Hard indeed but I think very wise

This note, written by 8-year-old me (ish) pleading for the toothfairy to give my disabled sister Clare a raise, made me well up a bit when Mum sent it to me yesterday. #siblife #rettsyndrome #disability

This is Clare, she's a legend! I'm preparing a case study about the work we've done together to keep her well for Rett UK conference. I'll be publishing the video in the spring after the conference. linkedin.com/posts/midwinte…

Regular reminder for journalists that some disabled people live in care homes too, and people with learning disabilities were one of the biggest victims of the pandemic death toll. If you’re only talking about Hancock failing older people, you’re missing part of the scandal.

Really quite extraordinary to hear two medical professionals discussing what they learned from reading a novel you wrote. So glad you picked it, @codebluenursey! Recommended listening 😀

N.B It is NEVER, EVER, the role of medical staff to make a judgement about someone else's qualify of life, particularly if they'd spent about two hours with them. If they're not verbal, ASK THEIR LOVED ONES. I will not apologise for shouting...