Thousands of Covid-19 survivors ‘can’t access NHS rehabilitation services as no proof they were infected’

A doctor at an NHS Covid-19 rehabilitation clinic in Surrey – Victoria Jones/PA Thousands of

A doctor at an NHS Covid-19 rehabilitation clinic in Surrey - Victoria Jones/PA
A doctor at an NHS Covid-19 rehabilitation clinic in Surrey – Victoria Jones/PA

Thousands of coronavirus survivors claim they are unable to access NHS rehabilitation services because they have no proof they contracted the virus, an investigation by The Telegraph can reveal.

Patients suffering debilitating symptoms over many months say their GPs are reluctant to test their blood for signs of previous infection or refer them to specialists, dismissing their concerns as “anxiety and mass hysteria”.

They are also concerned that antibody tests, which are not yet widely available through the NHS, will come back negative given the time which has elapsed since they believe they were infected.

The Post Covid-19 Syndrome Support Group, which has more than 3,000 members, is now petitioning Matt Hancock, the Health Secretary, for rehabilitation clinics to be set up across the UK for those experiencing long-term effects of the virus but have no evidence they contracted Covid-19.

They want people who believe they had the virus to be able to self-refer themselves to specialists without the need for either a GP referral or positive antibody test.

Symptoms reported by the group, who call themselves ‘long tailers’, include significant hair loss, incontinence, rashes, breast lactation in both men and women, slurred speech, and disruption to women’s menstrual cycles.

Louise Barnes, 46, who founded the group, told The Telegraph that many members feel let down by the NHS, as they themselves reduced the burden on the health service by isolating themselves when they had symptoms but are now being deprived of the support they need.

“We are feeling abandoned and helpless – we are fast becoming the forgotten victims of Covid 19,” she said.

“We don’t understand how, when we present to a GP with an array of symptoms that match those of positive tested long tailers, why we cannot get the medical help we need.

“We are trying to reach out at a grassroots level in a constructive fashion to get us ‘untestables’ the help we so desperately need. This is not a blame game nor should it be turned into a political issue, but we do feel we are getting nowhere.”

Some 250,000 people in the UK experience symptoms of Covid-19 for 30 days or more, according to a study by King’s College London.

Ms Barnes said many sufferers are keen to make use of the ‘Your COVID Recovery’ service, launched by the NHS last month to expand access to rehabilitation treatments to those who have survived the virus but still have problems with breathing, mental health problems or other complications.

However, while advice is free for all users, personalised care packages are only available to those who have a referral – either from the hospital they were treated at, or their GP.

“Many of us still are showing profound and debilitating effects of the virus months after being infected,” Ms Barnes wrote in her petition to Mr Hancock.

“We are not recovered – we are very sick and are needing help and support right now.

“Our GPs don’t know what to do with us and there is nowhere for many of us to turn for treatment.”

An NHS spokesperson said: “The NHS nationally has introduced a new online rehab service, with advice for everyone and personalised care plans to be available either through a GP or hospital referral, while local teams are expanding community rehab services to meet the needs of their local communities, including through Seacole style centres.”

The ‘forgotten victims of Covid-19’

Steph Parker, 33, lecturer and chef from the West Midlands

Steph Parker
Steph Parker

Ms Parker believes she contracted Covid-19 in March when her colleague returned from Italy with a cough. Her symptoms included chest pain and vomiting blood. She said her GP promised her a swab test to see if she had contracted the virus, but it was cancelled – which felt like a “lifeline” being snatched from her, as she could have now proved she had the virus and access the treatment she needs. Seven weeks after her symptoms first emerged, she said her GP dismissed her concerns that she was suffering long-term from Covid-19, telling her he had only seen patients showing symptoms for up to four weeks after infection. “I am deteriorating – it’s mentally draining being ignored,” she said. “Every symptom I was complaining about is now every long tailer’s nightmare, not just mine. They’ve continually left me pleading for help. It’s mentally drained me and physically I’m unsure if I’ll ever recover. I don’t have time to be this ill and I certainly don’t want sympathy. I just want help to get some liveable life back.”

Beth Bolitho, 46, child and adolescent psychotherapist from London

Beth Bolitho
Beth Bolitho

Ms Bolitho’s 11-year-old son was hospitalised for a few days with a fever and a rash, which she believes is due to him contracting Covid-19 from her. She said doctors refused to acknowledge his symptoms could have been directly caused by the virus and described it as “post-viral dermatitis” because he tested negative for coronavirus antibodies. She said his rash has since spread and seems to get worse with physical exertion. Her confidence in doctors to provide effective treatment for her son has been shattered. “Unless you are dying they just won’t take what you are experiencing seriously – they seem unable to link things up, to make connections,” she said. Ms Bolitho said she also suffered from a rash and feeling faint six weeks after she believes she contracted Covid-19. She said it took weeks before her GP finally referred her to a specialist, who advised her to take an antibody test. She decided not to, convinced that a negative result would be “another reason” for her concerns about being a  long tailer were dismissed.

Louise Barnes, 46, retired, founder of Post Covid-19 Syndrome Support Group, from Suffolk

Louise Barnes
Louise Barnes

Ms Barnes believes she contracted Covid-19 during a hospital visit in March. Her symptoms included loss of smell and taste, fever, persistent cough, fatigue, diarrhoea, abdominal pain and loss of appetite. After undergoing tests in hospital, she was told there was no more treatment available to her and was sent home. “I wrote my will and put my affairs in order by Easter weekend as I was sure I wasn’t going to make it – it was a terrible experience having to organise my own funeral and inform my family,” she said. She has taken antibiotics and steroids to alleviate her symptoms, but is frustrated at not being able to access specialist treatment for Covid-19 survivors. She set up the Post Covid-19 Syndrome Support Group and said many of her fellow members are alsoencountering a “wall of silence” from medical professionals. She said many feel regretful they didn’t go to hospital when they had the chance so they could get tested for the virus and prove they are a sufferer now to access support services. “What is perhaps the saddest aspect to this is that many members ironically didn’t go to hospital to put pressure on the NHS,” she said. “They did the right thing at the time and now consider themselves to have shot themselves in the foot.”

Source Article