NHS figures reveal a huge shortfall in long Covid treatment
Only 5,000 people a month are being referred to specialist long Covid clinics each month despite more than a million people having the condition – and a third of those are having to wait at least 15 weeks for their first appointment, NHS figures reveal.
Over the last year the NHS has set up dozens of specialist long Covid clinics in England to assess and diagnose people who visit their GPs with symptoms of the condition.
The Office for National Statistics estimates there are 1.2 million people in the UK – about a million of them in England – with long Covid, meaning they have had symptoms for 12 weeks or more.
But only 4,846 to 5,182 patients a month were referred to the clinics from July to September this year, the first period for which figures are available.
Of those patients who are referred, 33 per cent are having to wait at least 15 weeks to be seen for their first assessment – with another 15 per cent waiting for 10 to 14 weeks, the figures show.
Sarah Woolnough, chief executive of Asthma UK and the British Lung Foundation, said she was extremely concerned by the NHS figures – which tally with anecdotal evidence and her foundation’s own research.
“We’ve heard first-hand from thousands of people whose lives have been turned upside down by long Covid, who have had to quit their jobs and most-loved hobbies as they battle wide-ranging and disabling symptoms like persistent breathlessness,” she said.
“If that wasn’t tough enough, many people are then forced to deal with the debilitating effects of long Covid on their own, because of a lack of support and huge wait times for specialist care,” she added.
“The Government needs to train and recruit more specialist NHS staff, so that people with long Covid can access the specialist care they so desperately need.”
“In the meantime, healthcare professionals need to make sure they’re listening to the experiences of people with long Covid and helping them to access the services they need, wherever possible.”
There are 90 long Covid clinics in England, which are called “assessment services”.
These clinics assess and diagnose people experiencing the long-term health effects of Covid-19 and, where appropriate, refer patients on to existing services for treatment and rehabilitation.
Northern Ireland recently announced it was introducing long Covid clinics. There are no clinics of this kind in Wales and Scotland.
And while the long Covid clinic data relates only to England, the “problem of getting assessment and treatment” is a UK wide issue, said Ms Woolnough.
In August, a survey by LongCovid.org, a support group set up for people with the condition, also found patients waiting a long time for treatment.
“There are clearly vast, vast numbers of people who are not getting help,” said Long Covid Support founder Claire Hastie, who has the condition herself.
“When we looked at this in August, it wasn’t unusual to have a wait of five or six months but I’ve also heard of 10 or 11 months – while some people who first became ill in March 2020 are still awaiting appointments.
“And that’s just to your first appointment. Then from your first to your follow up appointment often you’re waiting three to six months. I don’t want to sound critical as people have worked very hard to do all this – but there’s a skills shortage.”
Health service representatives expressed their sympathy for patients with long Covid, while pointing out that by no means all of the 1.2 million people with the condition need to visit a clinic.
Dr Gail Allsopp, who is in charge of long Covid at the Royal College of General Practitioners (RCGP), said: “It is important to note that not every patient with prolonged symptoms of Covid requires referral to a specialist service.
“Many people with post covid syndrome are cared for by their primary care team accessing investigations, treatment and rehabilitation in the community – so the numbers being referred onward do not give us the full impact of those requiring support from the NHS.”
“The prolonged health effects that some patients experience after contracting COVID-19 can have a terrible impact on their lives – and as GPs, we want to do everything we can to help them,” she said.
The RCGP is calling for more investment into diagnostic and treatment services within the community, including better access to diagnostic tools in the community, so that GPs can rule out other serious conditions and ensure patients receive a timely diagnosis of ‘long Covid’ – as well as more investment into community rehabilitation services to enable treatment to be given close to patients’ homes.
An NHS spokesperson said: “Many people with Covid-19 feel better quickly with most making a full recovery within 12 weeks. But for those experiencing ongoing symptoms the NHS is taking practical action to support them – including setting up 90 specialist clinics covering the whole country, with the majority of patients receiving their first assessment within ten weeks.”
“Anyone who is concerned about long-lasting symptoms should come forward and get checked or go online to the NHS ‘Your Covid Recovery’ website for further advice.”
North-South waiting time divide
While a third of people in England visiting long Covid clinics for the first time in September had waited at least 15 weeks after being referred by their GP, the waiting period varied quite considerably around the country, with a north-south divide opening up.
Almost half (49.4 per cent) of those in the South West had been waiting more than 15 weeks, while in the South East it was 46 per cent and London was 40 per cent.
By contrast, 28 per cent of people in the North East & Yorkshire and the North West had waited that long – while the east of England and the Midlands were lower still, at 26 per cent and 25 per cent, respectively, according to NHS figures.
Garry Loftus is a 51-year-old army veteran and hospital porter. His story demonstrates the negative experiences people can have accessing support.
Garry, a father-of-four, is still experiencing symptoms 10 months after battling Covid-19, including breathlessness and chronic fatigue. He’s been unable to return to work and is worried about the impact this experience is having on his children, who were used to living with an active, healthy dad who walked on average 10 to 15 miles a day and now struggles with the 600m school run.
Garry says that: “Irrespective of my two decades in the military, this is the most challenging thing I’ve ever personally faced.”
Though Garry was initially hopeful when he was referred to a long Covid clinic, he then joined a seven-month waiting list and now feels he’s in limbo while waiting for upcoming tests and test results, including for organ damage and his respiratory function.
“When you’re living in this drawn-out waiting game, it’s just so frustrating. I never expected to get a clinic referral, be given a tablet to take and be totally fine again. But the word ‘clinic’ implies some treatment or at least a face-to-face appointment – all I got was a phonecall and then was signposted out to other services.
“While I wait, I have been piecing my treatment plan together, for example, by doing simple brain-training exercises like thinking of three fruits in the morning and trying to remember what they are later in the day, and trying to pace my physical activity as best as I can. I think self-management is an important part of recovery but I think it’s extremely wrong that I’m having to be so proactive in all of this, with virtually no support from healthcare professionals, when I’m feeling so unwell and helpless.”
Samantha Rodriguez, 55, from Barnet, has had a more positive experience
Samantha caught Covid in March 2020, when she was working as a nursery schoolteacher. She began to feel better after the acute phase of her illness, but about six weeks later she began to experience a number of symptoms including ongoing breathlessness, profound exhaustion, muscle and joint aches, fizzing sensation in body, numbness in feet and an abnormal sensation when walking, irregular heart rate and palpitations.
Samantha has been seen by multiple long Covid clinics, in north and central London.
She said: “Long Covid has changed my life, it’s cut my career short as I’ve had to give up my job that I loved and had been doing for seven years. But I feel lucky that I’ve had a more positive experience of seeking help and support than many others have done.
“When I spoke to my GP, he seemed knowledgeable about long Covid and referred me to my local post-Covid clinic. I did have to wait a few months for the initial referral to come through, but after that I was in regular contact with the clinics physiotherapists, both in person and over the phone.
“The physiotherapists I saw at the first clinic were very supportive and compassionate and I felt so well looked after. We worked on breathing techniques and a programme to slowly increase my activity. These have helped me to slowly build up my levels and I can now manage household duties and a daily 20-minute walk, which is much longer than I could do before I was referred.
“I’ve had a number of tests done, including heart rate monitor, blood pressure, blood tests, chest X-rays, doppler scan, neurology and am awaiting a nerve conduction study.”
The data shows that only 5,000 people a month are being referred to specialist clinics – with a third having to wait at least 15 weeks for their first appointment