Sussex ME Society calls for more funding for services as long Covid cases rise

The Sussex ME Society is receiving a “significant number” of calls each day from people who have not fully recovered from the virus and are suffering with long Covid.

Symptoms can range from extreme tiredness and a shortness of breath to chest pain, memory problems and dizziness.

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Colin Barton, chairman of the Sussex ME Society, is worried NHS services “will not be able to cope” with the increasing demand for support and said the government should provide more funding to existing services.

He said: “The situation people will end up in is very similar to those people suffering with myalgic encephalomyelitis (ME).

“We’re taking calls from people with long Covid and we’ve got good lines of support available, but we’re now experiencing a significant number of calls which have increased in just a few weeks.

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“Patients are getting referrals from their GPs and they’re looking for support in how they can manage the fatigue.

“It’s worrying as we don’t know for sure how many people will develop it – we think about ten per cent – and whether our NHS services will be able to cope.”

The Sussex ME Society helped to set up the county-wide Chronic Fatigue Syndrome (CFS) and ME Service in 2004, which is based at Haywards Heath Health Centre.

The specialist service, which currently has seven members of staff, is receiving an increasing number of referrals for long Covid patients.

Colin said: “They’re very concerned.

“We’re actually very fortunate in Sussex as we have this service already set up – it just needs extra funding to expand.”

Brighton Pavilion MP Caroline Lucas, is calling on the government to go further and also fund greater research into long Covid, as well as providing a compensation scheme.

Ms Lucas, who is a patron of the Sussex ME Society and a vice-chairwoman of the Parliamentary group on coronavirus, said it had been “heartbreaking” to hear stories of people suffering with the condition.

She said: “Tens of thousands of people, children as well as adults, have already been affected, many for months, with symptoms sometimes growing worse over time.

Caroline Lucas MP (Image: Caroline Lucas)

“Some are well supported by their GPs, others less so. There clearly needs to be much more understanding of and support for this awful condition.

“There must be more money committed to research into this condition and better reporting so that employers and the welfare system recognise how prevalent long Covid and how debilitating it is for many sufferers.

“We need a national register to record the number of people living with long Covid.

“If they’re unable to work, or do only a fraction of the work they did previously, they need to be properly supported, beyond the derisory statutory sick pay which is not enough to support someone for a week, let alone several months.

“And for those who contracted the virus and developed long Covid because of their role as a frontline worker, there should be a long Covid compensation scheme set up and funded by the government.”

A spokesman for the Department of Health and Social Care said: “We are acutely aware of the indiscriminate and lasting impact Covid-19 can have.

“We are working with the UK’s leading scientists on an ongoing basis to improve our collective understanding of the knock-on effects, including the impact it has on all ages for people with long Covid and to make sure we have the best treatments available.

“New specialist long Covid NHS clinics have opened across the country, providing assessment for adults, children and young people alike.

“These clinics will be play an invaluable role by helping medical experts to assess, diagnose and treat thousands of people suffering with the debilitating long-term health implications of this virus.”