Why is it so hard to get treatment for long Covid? I know this has been a question floated by patients on social media for a while.
But over the past fortnight, I’ve had first-hand experience of just how head-bangingly frustrating it can be trying to find help for this increasingly common problem.
And I’d go as far as to say that in my 15-year career as a GP, I’ve never experienced anything quite like it.
I have a patient who’s been suffering with symptoms since going down with Covid in April last year. Back when he first caught the virus, he went undiagnosed as there was no readily available testing.
It was pretty clear he had it, though. One member of his family was hospitalised with Covid and the other two fell ill at the same time. But while they all recovered, he did not. He’s in his 50s and also suffers from asthma, so is not the most robust of patients.
The decline in his health since then, however, has been shocking. He now suffers from extreme fatigue and a tremendous need to sleep at all times, which makes it nearly impossible for him to get on and do anything as simple as going to the shops.
He has a continuous cough – imagine having a cough for 16 months – as well as breathing difficulties that leave him gasping just climbing a flight of stairs.
All in all, his life has been wrecked by this disease, and in recent weeks he decided to take action. At the beginning of the month, he asked to be referred to a long Covid clinic.
More than £100 million has been put aside to fund long Covid clinics and there are now 89 centres across England
These healthcare hubs were set up with much fanfare from the Government at the beginning of the year. They vary in what they offer. Some are online-only, giving patients virtual consultations with doctors, but others are in-person, providing a space for patients to access a variety of specialists to combat their complex array of symptoms – all under one roof.
They may need a physiotherapist to help them rebuild physical strength, or a neurologist to handle their ‘brain fog’ – the term used by patients themselves to describe difficulties in thinking and concentration that seem to be a characteristic of long Covid.
More often than not, a respiratory consultant is needed to treat their shortness of breath – another symptom often described.
More than £100 million has been put aside to fund long Covid clinics and there are now 89 centres across England. According to NHS guidance, anyone who has suffered symptoms for longer than four weeks is eligible for referral.
Thousands of long Covid patients were questioned by scientists and reported more than 200 different symptoms.
This even includes patients who never tested positive for the virus – a relief for the thousands who suspected they caught Covid early on in the pandemic, such as my patient, when tests were thin on the ground.
When the scheme was first announced, it was a massive boost for patients who felt help was finally available.
If only this were true. In reality, getting into one of these hubs is a total nightmare. To begin with, I had to send my patient to hospital for a series of tests.
At the moment, the closest thing doctors have to a test for long Covid is to rule out everything else first. And so I had to get him booked in for an ECG – a type of heart scan – blood tests and chest X-ray.
The tests have to come back clear of any problems for the patient to be eligible for a long Covid referral. Last week, after the various tests carried out over a day in hospital came back clear, I was finally able to get things under way.
Because the patient’s fatigue is so intense, we decided to do the referral appointment over the phone to avoid another tiring trip out of the house. At this point, I thought the worst of the process was behind us, but I was wrong. There were three further laborious steps – and the whole thing took hours. For one patient.
First, there are two extensive forms which the GP has to fill out, explaining their reasoning for the referral and detailing the medical history of the patient. I had some of the information already, but much of it required me asking him to go over his story again.
Then comes the questionnaire, which the patient has to complete. Six pages of complicated questions, ranging from questions on mental health (‘Over the last two weeks, have you felt little interest or pleasure in doing things?’) designed to flag up depression, to levels of breathlessness and mobility.
I can’t think of another condition that requires something quite as onerous as this.
For my patient, who struggles to get out of bed most days, it was all too much. In fact, he ended up needing a family member, who sat with him at home, to help fill it out. I was on the phone with them, trying to offer assistance.
This form alone took an hour. At one point, my patient said over the phone: ‘I have long Covid, I should be able to go to a long Covid clinic. Why is this so hard?’
I really felt the same. Has the process been made as tricky as possible to put people off asking for a referral at all?
Worldwide, at least 16million people may be suffering from long Covid – and women seem to be affected more than men
Worse, having sent off the forms, all we can do now is cross our fingers. It is entirely possible the referral may be denied.
I’m pretty used to filling out reams of forms to get the simplest thing done. Although irritating, I know this red tape is important for making sure limited services like physiotherapy and psychotherapy are not swamped with patients who don’t need to be there.
But in this case I think it’s unnecessary. I would argue long Covid is a fairly easy condition to spot. I have about 30 patients at the moment who I’d say probably have it. I don’t need pages of forms to make that call.
And because the demand for long Covid treatment is so great, these marathon referral sessions are costing the valuable time of GPs all over the country.
According to the Office for National Statistics (ONS), more than 800,000 people are suffering with long Covid that has lasted for over 12 weeks, while nearly 400,000 have been grappling with the condition for at least a year.
Symptoms vary, but the most common tend to be shortness of breath, fatigue, muscle ache and ‘brain fog’ – which is problems with memory, increased confusion and sometimes mood swings.
More than 600,000 Britons told the ONS their long Covid is so severe their ability to perform day-to-day activities like getting dressed or taking a shower is limited.
And a quarter of these patients aren’t getting the specialist help they need, because their referrals to the clinics are unsuccessful, according to a survey of 900 patients carried out by the campaign group Long Covid Support.
One of the reasons treatment for long Covid is such a battle is because of the air of mystery surrounding the problem. Scientists still aren’t quite sure what causes it, or what it is, exactly.
Experts think of it as a collection of syndromes, rather than one specific disease. But just because it is difficult to tackle doesn’t mean patients won’t benefit from specialist services.
One patient, Gavin Wells, 56, from Tunbridge Wells in Kent, has been suffering with long Covid for 15 months. Gavin, an ex-soldier who now works in finance, spent six weeks in ICU after catching Covid in May 2020.
In the months after he left hospital, he says, he was unable to ‘walk, sleep, or do anything. All my joints hurt, my hands were constantly swollen and I was breathless every time I went upstairs’.
When Gavin first visited his GP last summer, he was told there wasn’t a long Covid clinic nearby that he could be referred to.
‘I had to do it all myself,’ he says. ‘I have seen a nutritionist, a physio and an osteopath. I’ve had acupuncture. All at my own expense.
‘These treatments helped a bit, but I’m still suffering.’
Two months ago, Gavin returned to his GP and was told that there was now a long Covid clinic in his area. However, he says the referral process was so complex that it took his GP six weeks to complete.
‘My GP didn’t understand one of the forms at all. Eventually he had to send it to me, and asked me to fill it out for him.
‘After we had sent that off to the long Covid clinic, they responded by sending another questionnaire which I had to fill out. It was basically the same details all over again.’
Luckily, Gavin’s referral was accepted and he is due to visit the clinic this week. ‘I really hope there is something they can do for me. The dream is to find a specialist who can explain it all.’
Long Covid specialists defend the complex referral process, arguing it filters out patients who could potentially be suffering from more serious, life-threatening conditions.
Dr David Strain, senior clinical lecturer at the University of Exeter Medical School, who runs a long Covid clinic in Devon, told The Mail on Sunday: ‘We’ve had a number of patients with undiagnosed diabetes wrongly referred to us. We even had one man who turned out to have cancer.
‘They all displayed fatigue, and this was mistaken for long Covid. So it’s important to rule everything else out.’
I understand this point of view. But I feel it is good GPs and patients who desperately need care who end up suffering as a result. Surely there is a middle ground somewhere?
There’s another disappointment long Covid patients are experiencing. Campaigners tell me that when many patients finally get to the clinics, they receive little in the way of help.
Claire Hastie, of Long Covid Support, said: ‘The clinics are not designed to treat you for long Covid – all they can do is tell you you might have it. But even then, there is still a disparity between clinics. Some do comprehensive assessments, while at others it will just be a phone call that isn’t even with a doctor.’
Catherine Bainbridge, 51, a bank worker from Stoke-on-Trent, caught Covid in January 2020. She says: ‘I thought I’d get better but I didn’t.’ Instead, she continued to experience overwhelming fatigue, brain fog, shooting pains in her limbs and heart palpitations.
Her GP eventually sent her for the prerequisite hospital tests – ECG, blood tests – which came back normal, and she filled out all the required forms.
Thankfully, Catherine’s referral was successful but she says she was taken aback by the experience of the clinic. ‘I thought it would be an actual physical clinic, which you’d go into and see doctors face to face. I imagined I would get several days of care at least and be given some sort of treatment.’
Instead, she says she got a short phone call. ‘It was no longer than ten minutes. The nurse asked me a few questions, told me I had long Covid, then said I was discharged. I thought, discharged from what?
‘It felt good to be validated and she said I would eventually get better, which I needed to hear, but I was expecting more.
‘I still struggle. I’m in work full time and when I come home I just collapse from exhaustion. I have three children and elderly parents who I look after, so I was holding out for the clinic helping. It felt more like a data collection exercise.’
This isn’t the first time I’ve heard these clinics described in this way.
I worry that they are not used effectively and fail to provide any positive support. But it’s in all our best interests for them to be used effectively.
With thousands of new Covid cases being recorded daily, it’s likely the number of long Covid sufferers will grow. GPs do not have the resources to care for all these patients, and they need to go somewhere. Nor do we have the time to deal with a referral process this complex and time-consuming.
For the sake of long Covid patients – and for everyone – we need to simplify the process.