This week, I want to address the issue of vaccinations for people with Fragile X and their families. I know this is something that many of you are very worried about and I need your help to raise your concerns with the Government.
I would like you to e-mail me and share your experiences of Covid, the impact of shielding and the lack of certainty over a vaccination date.
I will be writing to Matt Hancock the Secretary of State for Health and to Nadhim Zahawi (Vaccines Minister).
Sharing your stories and anecdotes (with your permission) will enable me to make a much stronger case. And now is the time to act.
I very much want to lobby and show support for you as the Fragile X Community.
Last week, I had a really positive conversation with Kemi Badenoch (Minister for Women and Equalities) about Fragile X and how the government can do more to help us.
I genuinely believe that more needs to be done. Whilst the current news agenda is focussing upon the success of the vaccine roll out programme with 15 million people vaccinated in the UK, many of you still face an anxious wait, with some timescales suggesting Easter as a realistic aim.
So why aren’t people with learning difficulties being prioritised?
According to the Joint Committee on Vaccination and Immunisation (JCVI), an independent expert advisory committee that advises UK health departments on immunisation, evidence suggests that risk of serious Covid-19 disease is strongly related to age, and risk of Covid-19 mortality is low in those aged under 40 years, even for individuals with clinical risk factors.
But this is only half the story.
Evidence shows that the current crisis has disproportionally impacted those with learning disabilities, with a recent governmental review* finding that people with learning disabilities were 3.6 times overrepresented in the Covid-19 death rate compared to the general population.
Furthermore, disproportionate rates of infection and mortality haven't been the only issues that have affected people with learning disabilities during this pandemic. As many of you will already know support networks have been disrupted, Government guidelines have remained inflexible, and there has been a scandalous use of Do Not Attempt Resuscitation orders. These have all contributed to a sense of isolation from the services which are meant to provide us all with support and care.
As a sector, Charity Leaders are taking action. Wendy Burnt and Jordan Smith, co-Chairs of Learning Disability England, wrote to Helen Whatley, Minister for Care at the Department of Health and Social Care, asking that further consideration be taken as to the priority of people with learning disabilities and also for those that support and care for them – such as friends, family, and workers assisting them.
Gary Bourlet, one of Learning Disability England's Membership and Engagement leads said: "People with a learning disability often rely on natural support, such as from family, friends and neighbours as well as paid support. We do not want people to be at risk or have to live restricted lives for longer than is absolutely necessary. Prioritising vaccination for people with a learning disability will help to address this higher risk of death from Covid and help people to access the support they need and be an active part of their community."
As The Fragile X Society, we will add our voice to the growing call for change.
On a more personal level, anyone who does have a worry or concern regarding the wellbeing of a family member should contact their GP. Particularly now, as GPs should have more discretion around vaccination following a letter they received (Vaccination of JCVI cohorts 5-6 and additional funding for vaccination in residential settings) which resulted from positive conversations with Mencap.
If you struggle to get hold of your GP, please do not be put off and try talking to your practice manager. Every one of you deserves the best possible care and support that the NHS can provide.
Stay safe and well.
*Research and analysis; COVID 19 deaths of people identified as having learning disabilities: summary. Published 12 November 2020
The following links provide some further information: