When the first vaccines were announced last winter, I remember dancing around my room with excitement, shut my eyes and started to picture myself getting my jab.
I have triplegic cerebral palsy, a neurological condition which means I am classed as clinically vulnerable and at higher risk of coronavirus. Like many other disabled people who had been shielding since March, the vaccine rollout felt like a glimmer of hope.
Things didn’t happen as I imagined. Despite being clinically vulnerable, I did not receive my vaccine invitation weeks ago, as I should have at the same time as the over seventies. By mid-February I still hadn’t been contacted, despite consistently reaching out to my GP for weeks. In late February, I was finally booked in for a vaccination appointment – because of my persistence, not policy.
Although I am thankful my nan has been fully vaccinated, my granny and my dad who works in healthcare have quickly received their first dose before me – despite the fact I am at significantly higher risk. In the winter months I have always struggled with cold, flus, tense muscles and chest infections. In March 2017 I caught a serious virus that left me staying overnight in hospital – as a result I endured months reduced mobility in which I could no longer walk with my crutches. I know from my serious medical history Covid-19 would significantly worsen my disability. I could likely die.
For that reason, knowing I’m clinically vulnerable, many people assumed I must have already received the vaccine. If even casual acquaintances knew I needed the vaccine, why couldn’t my GP surgery?
Getting the vaccine that will protect me from a life-threatening virus should be a smooth systematic process, not a postcode lottery.
I will admit it has hurt to watch friends with cerebral palsy in other areas of the country get shielding letters and vaccines, while my concerns and emails were ignored. Getting the vaccine that will protect me from a life-threatening virus should be a smooth systematic process, not a postcode lottery. Based on my friend’s experiences I would have received my first dose around a month earlier if I lived in London.
Although some might argue this is due to the different rates of supply, I think it’s down to different medical professionals and the personal choices they are allowed are make through individual assessments. Like me, a lot of young disabled people cannot get an assessment with their GP, making this system an unfair postcode lottery.
Vaccine rates amongst younger people classed as clinically vulnerable have also varied across the UK due to unclear government policy on what condition is in what the different categories.
According to recent ONS data, disabled women like me are 3.5 times more likely to die of coronavirus than others, yet still I was ignored. My GP surgery insisted I was part of category six as I am a young disabled person with a neurological condition. However, others I know with my condition were openly told they could be vaccinated in category four, thanks to government advice which gives medical professionals have the power and discretion to prioritise at-risk patients like me.
As reported in the Guardian, however, many GPs do not realise they can prioritise disabled people using their own judgement. They do not understand their own power. My GP practice has been a revolving door of locums, meaning I have never had a consistent doctor with a good understanding of my medical history. This inconsistency means I did not have a trusted GP who could easily vouch for me and my need for a vaccination.
For me, this is a relief after such a long battle – but it is not the end of the war for many.
Most areas of the country, thankfully, have now moved into vaccinating category six patients, meaning young disabled people should be vaccinated soon if they haven’t already.However they should not have to fight for the vaccine, but rightfully receive it. It should never be this hard.
Shielding has been tough – I haven’t been able to even go around my block, and have to watch from my window as my neighbourhood is busy with daily walkers. I was of course excited to receive my first dose – It means in just over twelve weeks I will be able to re-enter the outside world, even if that just means going to my local shop. For me, this is a relief after such a long battle – but it is not the end of the war for many.
Young, disabled people like me deserve the vaccine, without a fight. We are, statistically, at higher risk than non-disabled people in their middle ages. The vaccine is vital for both our physical and mental wellbeing. This week the government added 1.7 million people to their new shielding list as an attempt to improve the way people are prioritised for the vaccine, but this feels too little too late.
Francesca Hughes is a freelance journalist. Follow her on Twitter at @franariella
Have a compelling personal story you want to tell? Find out what we’re looking for here, and pitch us on firstname.lastname@example.org