UK’s long Covid patients facing postcode lottery for support
Long Covid patients have voiced growing frustration at a “postcode lottery” in clinical support for debilitating symptoms, with some areas of the UK offering no specialist clinics more than a year after coronavirus took hold.
Other sufferers said they were disappointed by long Covid clinics investigating certain symptoms only, with no comprehensive treatment plan.
Official figures suggest there are more than 1 million Britons with Covid symptoms lasting over three months. In October, NHS England announced more than £10m for a network of clinics bringing together doctors, nurses, therapists and other NHS staff to conduct physical and psychological assessments and recommend treatments for long Covid patients.
Additional local funding would also be available to help establish a clinic in every area, the NHS England chief executive, Simon Stevens, said. By December, 69 clinics had been set up in England with a further 12 sites earmarked to launch in January.
But Louise Barnes, founder of the Post Acute Covid Syndrome 19 (Pacs19) patient advocacy group, said a survey of 200 British members revealed about 90% had not been able to access a clinic because there wasn’t one available, their GP could not refer them or they were declined without explanation. Others were disappointed by the type of services on offer.
Barnes said: “Patients in the UK have waited going on a year to get support for the multitude of symptoms they’ve been experiencing. To finally think you are going to get referred to a clinic but your GP tells you they don’t have any information, or you get there to find it’s a ‘respiratory-only clinic’ or only staffed by physiotherapists leaves them feeling despondent. For the most part, sadly, patients are coming away massively feeling let down and with no viable treatment plan offered – even a rudimentary one, whilst a treatment is found.
“We’ve heard very good reports from some of the clinics in Leeds, Leicester, Bristol, and University College hospital (UCH) in London, but there still exist prominent geographical inequalities regarding access with many patients in Scotland, Wales and Northern Ireland unable to access them at all – likewise in Devon and other areas. Some patients are unable to travel and no transport has been offered.”
Lisa Milburn, 51, from Wakefield, remains signed off work because of the “sloth-like” fatigue and brain fog she’s been suffering since developing Covid a year ago. She lives seven miles from the Leeds long Covid clinic but cannot access it because it falls under a different hospital trust. Her local trust, Mid Yorkshire, is not running a clinic. Her GP referred her for a chest X-ray, blood tests and an electrocardiogram (ECG), which came back normal.
She is fortunate to have accessed private physiotherapy and occupational therapy through her employer but said: “I just want an expert to look at me as a whole person and say this is OK, that’s OK, I suggest we do this because it fits in with how we’ve treated post-viral fatigue previously, and I’ll catch up with you again in three weeks.”
Vicky Naylor, from Wigan, has been told her local clinic is currently only seeing NHS staff. The 55-year-old’s GP referred her to a respiratory consultant due to the shortness of breath and lung pain she has experienced since developing coronavirus in March 2020 but she is waiting to be physically assessed.
She also has extreme joint and muscle pain, brain fog, and rashes and bruises that come and go. “I want to go to a Covid clinic just to see if they can relieve any of these symptoms. I know it’s very new, and nobody really knows what they’re dealing with, but I need to see someone who is doing research into long Covid and has got an understanding of it,” she said.
In Scotland, there are no specific long Covid clinics. Tamsin Stewart, 37, from Balfron in Stirlingshire, has been ill since March last year. “I’ve had basic tests at my local hospital but not seen anyone in person other than a neurologist who suggested I might be imagining it all,” she said. “My GP has been great but can’t do much more for me without consultant help. We need our organs scanned fully and we need to see consultants face to face.”
Even when a local clinic is available, some patients are disappointed. Fin Edge, 58, from Reading, waited months for an appointment at the Royal Berkshire hospital long Covid clinic and eventually had an online consultation with a doctor. “We spoke about my symptoms, and how I was waiting to complete a 72-hour ECG. He said he would be interested in knowing the results of my ECG, but the lion’s share of his focus was getting me psychological help, and getting me to a physiotherapist. He briefly mentioned pacing [a self-management strategy for activity, involving rest periods].
“I’d like them to look at why I am a year on and still unable to walk across the room without becoming dizzy or sick. I’d like them to do a CT scan of my lungs, and some endocrine tests. I don’t have good days. What I want is to be heard, to be assessed, to be supported.”
Dr Amitava Banerjee, a cardiologist at University College London hospitals and Barts health NHS trusts, who has been assessing patients at the UCH clinic as part of a study into the long-term impact of Covid on organ health, said: “It’s not only a postcode lottery, it’s a lottery of knowledge at the moment as well. There are clusters of symptoms but at this stage we don’t know which are the ones to worry about, which treatments work and which forms of rehabilitation work.
Another issue is resources. Banerjee said: “At UCH it’s working, because we’re a big teaching hospital with lots of people … [Elsewhere] you’ve got GPs and specialists struggling with the backlog of clinics, surgeries and so on … Unfortunately the inequalities that you see by ethnicity, by socioeconomic status, by geography, are the ones that are going to be unmasked by this. The scale of this is so big.”
Trevor Wilson, 53, waited six months for an appointment at the Nottingham assessment clinic but has now had an assessment including a CT scan. It identified minor lung damage so he has been referred back to his GP to see if asthma medication could help. Even so, “I’ve had no real answers, and it didn’t feel like I was getting any support. It felt more like a data-collection exercise. And apparently I’m not going to be seen again,” he said.
An NHS spokesperson said: ”We are seeing an increasing number of patients through our network of clinics … and are continuing to learn about the best treatment options for this complex condition. The national guidance is clear that the clinics should offer patients physical, psychological and cognitive assessment and access to a multidisciplinary team, which we will be offering to more patients in the coming months with more clinics set to open.”
A Scottish government spokesperson said: “Our approach is for people to have access to the support they need in a setting that is as close to their home as possible … [supported by] GPs, wider primary care teams and community based rehabilitation services.”
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