* Sign the letter & listen to the audio version at the bottom of the page
*Added 24th Feb - Today, the Government announced that some people with learning disabilities would be added to the vaccine priority list. This is progress, but it is nowhere near enough. There are still tens of thousands of people across the country who face far higher risk of severe illness or death than the general population who will not receive priority access to the vaccine - demand action today.
Nadhim Zahawi, MP Parliamentary Under Secretary of State (Minister for COVID Vaccine Deployment) and Matt Hancock, MP and Secretary of State for Health and Social Care
The last year has been an exceptionally hard one for those of us who are disabled or chronically ill. Many of us were given the instruction to shield, and many more made the choice to do so in order to protect our health and others’. We watched as lockdown eased and our friends, family and colleagues went back to work, out for dinner, and visited each other, and while some of us were able to enjoy the same freedoms, many were not. When the R rate started to rise and the obvious danger the country was in became clear, we locked down early and did not make plans for Christmas.
The one shining light at the end of a very dark tunnel was the vaccine. We knew that for once, even though there were business leaders and public personalities calling for disabled and chronically ill people to be locked up even longer and left behind because of our ‘lesser value’ to able-bodied people, we would be prioritised for the vaccine, which would mean our lives could finally start getting back to ‘normal’.
As the roll-out started, however, language around priority levels was suddenly amended, apparently omitting many of us entirely. Suddenly whole swathes of people with underlying chronic health conditions, many of whom have self-shielded all year due to far greater risk of death and side effects from the virus, appeared to have been removed from the vaccine priority list. This terminology change caused real anxiety and confusion to those self-shielding, adding the worry that despite the severity of their conditions and their vulnerability to the virus, they would be made to wait behind those who are at far less risk.
A new concern began to emerge as the roll-out progressed and those shielding began to receive their invitations: many shielders struggled to get on the approved list. The gaps in the system are huge and widely reported, with some rare conditions ignored and those whose GP records say something different from their hospital records being falsely marked down as low priority. Many began to worry that they would be denied vaccines because of the original, flawed system for shielding and found that there was absolutely no-one to call if they needed clarity or felt that a mistake had been made. We heard from people who were being told one thing by their specialists and the opposite by their GP, who advised them to simply wait and see if they received a letter. With 19% of working adults having a disability, there are millions of people who have been left in the dark about their vaccination status. As GP surgeries work round the clock to vaccinate their patients, many of us have been left unable to get through to a doctor. When we do, we are chastised for seeking clarity.
The lack of clear information for those people with rare conditions or allergies has also led to many people being unsure whether a particular vaccine will be safe for them, or how to opt out of the Pfizer vaccine which has caused some anaphylactic reactions. Others undergoing regular treatment or taking specific medication have been told that they may not do so for a period after being vaccinated, and so require enough warning between invitation and vaccination for contingency planning, so this treatment gap does not lead to an otherwise inevitable decline in health and a drastic increase in symptoms. While we appreciate that the speed of the roll-out is fantastic, the lack of time to plan is a barrier to those on treatment waiting lists.
Disabled and chronically ill people are being asked to put absolute trust in a system which left many of us locked inside without support in the early stages of the virus, which issued illegal blanket DNRs to learning-disabled people with no clinical justification and which at every stage has forgotten and omitted many of us whose lives are at greatest risk of the virus. The extraordinary speed of the UK’s vaccination programme has been fantastic - but we must not allow the system to fail those who need it the most.
Therefore we ask you to implement some key policies to make sure that those of us who are vulnerable, either through disability or chronic illness, will not be left behind yet again:
- Provide clear, easily accessible guidance on what process to follow if you have been told to shield by a medical professional (category 4) but are not on the official shielding list.
- Commit to providing financial, practical and employment support to all those shielding, including the almost 2 million shielders added to the list on the 16th February.
- Set up a dedicated number or website where those who have concerns about their condition and the potential risks of the vaccine can find relevant information that is accessible and updated regularly with new findings.
- Guarantee that those with underlying health conditions that are not considered ‘severe’ will be vaccinated ahead of the general public. This category would include anyone who is invited to have a flu jab due to their condition, as initially communicated, as well as those with a serious mental illness, those with mild to moderate learning disabilities, and anyone receiving social care.
- Provide facilities for all vaccinations offered to disabled or chronically ill people to be carried out close to home, if needed. It is simply not possible for many to travel miles to a mass vaccination centre, often on public transport, and stand in line as they wait.
We also ask that as the vaccine is rolled out, disabled people are included in the planning and communication of each phase. It is clear that we have not been considered due to a real lack of any disabled people in decision-making positions.
Freya Papworth, Co-Chair of the Women’s Equality Party Disability and Long Term Health Conditions Caucus
Amanda Carter-Philpott, Co-Chair of the Women’s Equality Party Disability and Long Term Health Conditions Caucus
Dr Hannah Barham-Brown, Deputy Leader of the Women's Equality Party and Committee Member of the Disability and Long Term Health Conditions Caucus
Dr Sarabajaya Kumar, GLA Women's Equality Party Candidate and Committee Member of the Women’s Equality Party Disability and Long Term Health Conditions Caucus
Helen Berrie, Secretary of the Disability and Long Term Health Conditions Caucus
Alison Smith, Secretary to the Women's Equality Steering Committee and Committee Member of the Women's Equality Party Disability and Long Term Health Conditions Caucus
Rebecca Manson Jones, GLA Women's Equality Party Candidate and Equal Health Spokesperson for the Women's Equality Party
Baroness Jane Campbell, disability equality and human rights campaigner and crossbench member of the House of Lords
Sophie Christiansen CBE, Paralympic Equestrian Gold Medalist and disability campaigner
Ann Bates OBE, former advisor to the Department for Transport
Sue Groves MBE, disability rights campaigner
Robin Christopherson MBE, Head of Digital Inclusion, AbilityNet
Andrew Miller MBE, Co-founder, UK Disability Arts Alliance #WeShallNotBeRemoved
Samantha Renke, broadcaster and disability campaigner
Ruth Madeley, actor and disability campaigner
Rosie Jones, comedian
Athena Stevens, Olivier-nominated actor and playwright
Dr Frances Ryan, journalist
Rachel Charlton-Dailey, journalist
Tracey Lazard, CEO, Inclusion London
Linda Burnip, Co-founder of Disabled People Against Cuts
Kirsty Hoyle, CEO, Transport for All
Katie Pennick, disability activist and Campaigns Lead, Transport for All
Maria Grazia Zedda, Accessibility Lead, HS2
Anthony Jennings, Campaign for Level Boarding
Sunil Rodger, Campaign for Level Boarding
Chris Stapleton, Campaign for Level Boarding
Doug Paulley, disability activist
Ginny Butcher, disability activist
Sarah Rennie, activist and lawyer
Shani Dhanda, disability specialist and speaker
Shona Louise, disability and theatre blogger
Jessica Kellgren-Fozard, social media personality
Cathy Kamara, social media personality
Joe Wells, comedian
Carrie-Ann Lightley, disability blogger
Heather Lacey, disability rights activist, D&I writer, speaker and consultant
Liz Devlin, disability campaigner
David Alexander Williamson, sportsperson and fundraiser
Dr. Katherine Deane, Senior Lecturer in Healthcare Research, University of East Anglia
Rick Hulse, Chairman of the Board of Trustees, The National Association for Bikers with a Disability
Marian Nicholson, The Shingles Support Society
Ernie Boddington, Chair of MKCIL
Tim Davies, CEO of Camphill Communities Milton Keynes
Cathy Maker, Chief Executive of RUILS
Mandu Reid, Leader of the Women's Equality Party
Helen Pankhurst, Convenor, Centenary Action Group
Clare Walton, CEO Community Action MK
Mark Fowles, MD, Nottingham City Transport
Richard Solly, Diversity Officer, TVP
Alexa Wilkinson, Chair, Works For Us
Marion Cole, CEO, Works For Us
Sue Payne, Secretary, Soroptimist International MK
Gillian Bryan, MK Fawcett Society
Jane Whild, MK WEP Branch Leader
* N.B. We appreciate that key workers such as those within the NHS, carers, supermarket workers and refuse collectors are at a higher risk due to their occupation and so do not consider these people to be in the ‘general public’ category.