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