I was devastated when I heard the news that access to free testing for Covid will end in England on 1 April.
For many people, this will be a minor inconvenience; for others, not even that.
For me and my family, it could be the difference between life and death.
I’m a sibling carer to my brother, Dan, who is 17 months older than me and has Profound and Multiple Learning Disabilities (PMLD). Dan loves music, and getting out and about. He really enjoys trips out to the local swimming pool, the local community garden or Chester Zoo – either with me or one of his personal assistants (PAs).
Wherever we go, we look for sensory experiences. Walking in warm water at the swimming pool is excellent for Dan’s physical health and he loves exploring the sounds of the drains, the spray of the water. Regulars recognise him and smile; he is a part of his community.
For his wellbeing, it’s important for to spend time in familiar places and with people he knows. Dan is a valued volunteer at our local community garden. Here, we help them to make the space more accessible for all and often arrive with a homemade cake to share.
All of these trips out, stopped, of course, when the pandemic hit.
Dan lives in Cheshire with my parents and my house is nearby. Dan is clinically extremely vulnerable (CEV) and shares the same genetic condition, ATRX, as our younger brother Sam, who passed away from sepsis in 2019.
Dan has a severe learning disability and cannot communicate verbally. His sight is severely affected, and he uses a wheelchair outside. We cannot be sure how much Dan understands the world around him but he certainly can’t follow instructions such as ‘wear a mask to keep safe from Covid’.
He has no concept of danger and needs direct support with all aspects of his personal care and daily living.
We know people with learning disabilities are more vulnerable to Covid, and a disproportionately high number of people with learning disabilities have died from it.
Dan experiences the world through touch: he is likely to put items to his mouth, put his face right up to things and sometimes lean his mouth against surfaces. We spray and wipe down everything we possibly can so that Dan can safely continue to explore his environment.
We are living with a heightened state of threat and anxiety. As safety measures like masks and hand gel become less common, every trip out of the house becomes risker.
When I heard free testing would be ending so soon, I knew this could be very dangerous for Dan and so many other people in his situation.
I’ve never been so keen to go down to London and shout at Boris Johnson, though I know I can’t do it that way. For one thing, I can’t get on a train to London.
We’re still taking lots of precautions against Covid-19 and that involves not being in crowded places. So that’s why I launched my petition calling for free lateral flow tests for clinically extremely vulnerable people like my brother Dan, and those around him – whether they are symptomatic or not.
People don’t realise how demoralising it is when they suggest we can solve our problems by shutting ourselves away indefinitely, while everyone else gets on with their lives. I’ve seen this reaction so often on social media, TV and radio – especially when there are calls for certain safety measures like free testing to return in certain situations.
I want to explain that we have shut ourselves away before – a week before the first lockdown, we began shielding as a family for over 100 days. I moved back into my parents’ home, and we put all other PAs on hold.
Dan did not know why his other PAs had left, though we tried to keep in contact online and hoped he could recognise their voices.
In that first stage, dog walks were the only trips out we did, and Dan did not leave the house at all. We simply cannot shut ourselves away forever.
I was humbled by how well Dan coped with all the changes in lockdown. He walked us to the front door and tried to open it to go out. It was heartbreaking not to be able to show him we understood what he wanted.
We eventually established a new routine and headed to the garden (I’m so grateful we had that outside space). We spent our days with musical instruments, sensory play and crafts. I got him an inflatable hot tub, giving him an experience slightly similar to his favourite thing of swimming.
Dan is used to being out and about. It’s really important for him to be part of the community and to be meeting new people and getting used to new situations. I really didn’t want him to lose the social skills he had built up before the pandemic.
Dan and the people around him – his friends, his PAs and his family, including me – all have lives, friends and keen interests, just like everyone else.
And even if we did decide to shut ourselves away, it would still be impossible to fully protect Dan. The PAs come from outside our home, so they need testing.
It’s crucial these tests are available to Dan and people around him before symptoms occur. The suggestion that we might have free tests after symptoms occur is nowhere near good enough.
All PAs supporting Dan feel strongly that we need access to testing. We clearly cannot expose Dan to a virus that is highly dangerous for him. If you’re doing this kind of support work, you want to enable someone to live a full life; the last thing you want is to be a big risk to their health.
Dan is clinically extremely vulnerable and Covid is a serious threat to his life. While of course no one likes being in hospital, we know from experience that Dan finds it extremely traumatic.
As Dan’s communication is non-verbal, he lets people know what he wants by leading them where he wants to go. People who don’t know him would not be aware of this. Dan being in hospital alone is unthinkable.
Without support from people who know him well, it would be dangerous and distressing for him. Any time he is unwell, it can cause him to panic and he is desperate to escape. He would be disturbed by routine procedures, let alone oxygen tanks or ventilators.
Dan can’t pinpoint when he is distressed or in pain. We know that something is wrong, and it’s a process of elimination or a best guess from people who know him well.
Dan’s physical and learning disabilities affect his ability to swallow and mean he can’t follow instructions such as ‘take deep breaths’ if his breathing is compromised.
He had previous admissions for breathing difficulties, which was very scary for him and for those close to him. So far, since the start of Covid, he has not had any acute illness requiring hospital treatment – a huge relief for us.
Some people want to pretend this virus is no longer here. Sadly, that is far from the case. I’m glad the Omicron variant is milder, and that Dan is triple-vaccinated (though I’m aware some people can’t have the vaccine). However, Covid is still a serious danger – not just to Dan but to many others.
Our family and many others can’t go back to ‘normal’. It’s not a case of doing everything or doing nothing. We are going out, but very cautiously. Sometimes, against our instincts, we have to be cautious among lots of people: we wear big yellow hi-vis vests with clear instructions for people to keep their distance. Most people are respectful. Some people take no notice; I wish they did.
As someone living with a disabled person who is clinically extremely vulnerable, it’s a very challenging time and at the moment, we feel forgotten.
I want more guidelines for people who have been shielding. I feel like there should be a central place where people in our situation can go for advice on Covid and seek answers to questions.
People think we can go to a social worker but that won’t happen: a social worker’s expertise is not in Covid and they have neither the time nor the resources to talk to us about this.
I understand people who support my petition, but who wanted to ask for more. I understand the anger in England after the government abandoned any requirement for mask wearing, and, amazingly, mandatory self-isolation after positive tests. However, I feel the government are more likely to listen if I keep my petition focused on my main goal: improving the provision of testing.
Free testing is essential to keep Dan alive, and the same goes for other people who are clinically extremely vulnerable. Please sign my petition. The more signatures we get, the better protection we will have for people like Dan.
Disability charity Leonard Cheshire is supporting Sarah’s petition. Led by people with experience of disability, Leonard Cheshire works with disabled people in the UK and worldwide.
We support people to fight for their rights and live their lives as independently as they choose. Visit: leonardcheshire.org or follow us on Twitter: @LeonardCheshire
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