At Action for Pulmonary Fibrosis, we pride ourselves on being an organisation led by patients, for patients. Today, we stand with 18 other charities across the UK to warn the Prime Minister of the risks for immunocompromised people if his plan for “living with COVID-19” goes ahead.
Steve Jones, Chair of Trustees at Action for Pulmonary Fibrosis:
“I have been locked down since 4th March 2020. Since then my wife and I have not been inside any building except our house and the hospital/GP.
We were very close to our grandchildren (all under 5) before the pandemic, but it’s difficult to explain to little ones why you suddenly cannot play inside with them or cuddle them.
“It’s better in summer, when we can play in the garden, but grim in winter with adverse impacts on mental health. Freedom Day last year was lock down day for us! We need prophylactic monoclonal antibodies and anti-virals to put us on a par with the rest of the population, as well as ready access to anti-virals if we do become infected.”
PRESS RELEASE STARTS:
There is no end in sight
A coalition of 18 health charities* supporting over 500,000 immunocompromised people has issued a stark warning to the Prime Minister that, despite the vaccine programme, COVID-19 continues to pose a serious threat to this group of people.
The government’s plan for living with COVID-19 is due to be released on 21 February. Ahead of that happening, charities including The MS Society, Blood Cancer UK and Kidney Care UK, have outlined the ‘5 key tests’ the plan must pass to ensure it supports those most at risk from COVID-19 now, and in the future.
The charities highlight how severely immunocompromised people do not get as much protection from vaccines, and many are more likely to suffer severe illness if they catch COVID-19, compared to the general population. The five tests focus on how this group of people, including the clinically vulnerable or clinically extremely vulnerable, who are among the most acutely affected by the pandemic, can be supported by the government to manage their risk. The five key tests are:
1. Directly address the concerns of people at highest risk and commit to improve communication with them
2. Smooth, timely access to COVID-19 treatments
3. COVID-19 tests to remain free for all
4. Improve employment protection and support
5. Set out a plan for the use of preventative COVID-19 treatments and prioritise further research into treatments and vaccines
Last week, the Prime Minister announced that all COVID-19 restrictions in England – including the legal requirement to self-isolate – will end a month early. Despite the removal of these measures, the government has yet to explain the scientific basis for this decision or how immunocompromised people will be supported to remain safe. The latest guidance for immunocompromised people was quietly published online at 6pm on 24 December 2021.
Sarah Hemmings, 34, lives with highly active relapsing MS and is from Norwich. The mum-of-two is on the disease modifying treatment (DMT) ocrelizumab to manage her MS symptoms, which include fatigue, sensory issues, and speech and concentration difficulties. Due to the pandemic, Sarah is currently on an extended career break from teaching. She says: “It seems that the safety and freedom of immunosuppressed and other vulnerable people has been sacrificed in the interest of those who already have lower risks. We are a significant and diverse group who were living full and meaningful lives; to an extent, mask wearing, social distancing and isolation periods were enabling us to continue at least some vital interaction with others. Now, I feel I am the most restricted and least free I have been in my adult life. Instead of returning to the career I love in teaching, I find myself cautious in hugging my own child as she returns from a school where case rates have exploded.
“It feels as though, despite their rhetoric, the government feels that only some of us should have to learn to live with the real ramifications of coronavirus. It makes me feel angry and ignored. There is no end in sight. The risks must seem low to those who don’t have to take them.”
Fredi Cavander-Attwood, Policy Manager at the MS Society, says: “As a coalition of charities supporting those who remain most at risk from COVID-19, we’re urging the government to stop ignoring the reality of our communities. The Prime Minister must directly and immediately address their concerns as we move to this new phase of the pandemic. It is not our goal for blanket restrictions to be reinstated – we simply want all 500,000 immunocompromised people, including some with MS, to be protected and supported to manage their risk so they can live normal lives.
“That’s why the government’s plan must include sensible, simple measures, like maintaining free testing, strengthening employment protections for people at risk, making sure they get treatment quickly if they get COVID-19 and having a plan for the use of preventative treatments. We must all be able to live alongside COVID-19 – and that can’t happen if the government continues to leave the most vulnerable behind.”
Helen Rowntree, Director of Research, Services and Engagement at Blood Cancer UK, says: “While we understand why the Government wants to lift restrictions, this needs to be accompanied by a plan for how they will protect those who are still at risk from the virus. Throughout the pandemic, the huge anxiety our community has faced has been made worse by the poor government communications, and the Government needs to set out how it will make sure the immunocompromised are not left behind as the pandemic’s forgotten victims as the country returns to normal.”
Fiona Loud, Policy Director at Kidney Care UK, says: “We are worried about the government’s plans to remove Covid-19 self-isolation rules. We urge the government to show some commitment to 500,000 immunosuppressed people by sharing their plans, and the evidence for this decision. Abandoning all measures without preventative treatments, free lateral flow tests, and a duty not to expose immunosuppressed people to Covid unnecessarily risks making us into second class citizens. Despite Omicron being a milder illness for the general population, there remains uncertainty about future variants, further impact on higher risk groups; with a record of really poor communication this will make things harder and increase anxiety for people with kidney disease who have already spent two years under Covid-19 stress.”
ENDS
Notes to editors
For press enquiries please contact: Samantha Banks, MS Society PR Manager. E: Samantha.banks@mssociety.org.uk T: 07825 441208
References
* Muscular Dystrophy UK, Kidney Care UK, Motor Neurone Disease Association, Rare Autoimmune Rheumatic Disease Alliance, Scleroderma and Raynaud’s UK, Action for Pulmonary Fibrosis, Blood Cancer UK, The Arthritis and Musculoskeletal Alliance, Anthony Nolan, Macmillan Cancer Support, Lupus UK, Parkinson’s UK, Crohn’s & Colitis UK, Versus Arthritis, Asthma UK & British Lung Foundation, National Rheumatoid Arthritis Society (NRAS), Kidney Research UK, MS Society.
About multiple sclerosis
• Over 130,000 people live with multiple sclerosis (MS) in the UK
• MS damages nerves in your body and makes it harder to do everyday things, like walk, talk, eat and think
• It’s relentless, painful and disabling
• Research has got us to a critical point. We can see a future where nobody needs to worry about MS getting worse
• Our Stop MS Appeal needs to raise £100 million to find treatments for everyone with MS
About the MS Society
• The MS Society is here to make life better for people with MS, through research, campaigning and support
• For information about MS or to donate visit www.mssociety.org.uk