A RECENT announcement of £5 million to tackle ‘Long Covid’ in Wales has been questioned by sufferers of the condition – as they feel it is not being spent on the correct type of treatment.
Long Covid is a debilitating condition which leaves sufferers with various conditions and symptoms following a Covid-19 infection. Symptoms can include – but are not limited to – breathlessness, fatigue, heart palpitations, loss of strength, ‘brain fog’ and kidney issues.
In Wales an estimated 56,000 people are suffering from Long Covid, according to the Office for National Statistics.
Around 1,000 of these are in a group called Long Covid Wales, a support network of sufferers including healthcare professionals.
It is this group who have called for more to be done. “£5 million is not a lot of funding at all,” said Georgia, one of the group’s members.
“In England, they are on their fourth or fifth round of funding for Long Covid support.
“The funding in Wales is going towards GPs to help them with noticing the signs and symptoms of Long Covid.”
When the funding was announced, the Welsh Government said it would go towards:
- Helping healthcare workers develop infrastructure to flexibly deliver services to help people recover from Long Covid.
- Provide high quality, evidence-based training and digital resources to assist in diagnosing, investigating and treating Long Covid.
- Invest in digital tools which will provide data about service demand and capacity modelling and ensure the NHS helps people make the right treatment decisions.
Health minister Eluned Morgan said: “Investing in services and a dedicated support programme for those recovering from the long-term effects of Covid-19 is crucial as we begin the recovery from the pandemic.”
The group have been calling for Long Covid clinics to be set up in Wales which they believe will be beneficial for the diagnosis and treatment of sufferers.
What is England’s stance on Long Covid?
In England, there are a few different treatments for Long Covid, with varying effects.
“There are nearly 100 clinics in England. There are also groups online which provide a more holistic and educational approach,” said Georgia. “However, people in those online groups have said that the majority of what is being taught is common sense and already done by most of them.
“The gold-standard clinic we want the Welsh Government to take notice of is UCLH (University College London Hospitals). It is the best clinic in England for Long Covid support. They run a multi-disciplinary clinic which provides diagnosis of individual conditions which have been brought on by Covid.”
The clinic was started in May 2020 by clinic lead and integrated respiratory physician Melissa Heightman, and between May and October that year, more than 1,000 appointments were carried out. The clinic runs three times a week and includes physiotherapists, respiratory physiologists, psychologists, cardiologists, neurologists and infectious disease doctors.
Ms Heightman said: “We established the service at pace in response to concerns about the clinical safety of patients, given a growing appreciation of early and late post-Covid-19 complications and symptoms.
“We have tried to respond to patient need at a time when it has been difficult for patients to access healthcare and when post-Covid-19 complications were poorly understood.
“From the outset, we have accepted referrals from primary care and we have offered follow-up to patients discharged from our own emergency department. These patients have been assessed in the same way as those who were discharged from our hospitals.
“Wherever possible, we have aimed to offer a one-stop assessment by a doctor and therapist in person, with access to diagnostic and exercise testing.”
Toby Hillman, a consultant respiratory physician at the clinic said: “We have identified a number of post-Covid-19 phenotypes, or symptom groupings, and we are supporting national groups in developing a case definition and approach to investigations.
“We have partnered closely with allied health professionals to understand the nature of support needed by patients and their safety to engage with it. We are increasingly concerned by the severity and nature of prolonged post-Covid-19 symptoms, and we feel the need to understand the mechanism of these and treat them better.
“Patients affected are often of working age and their quality of life has been seriously impacted. Many are NHS staff who have struggled to access adequate care through the usual routes.”
The clinical assessment in the Long Covid clinic at UCLH has physiotherapists assess unexplained breathlessness and fatigue and screen for other rehabilitation needs. The physiotherapy team will treat those with identified breathing pattern disorder after Covid-19 and work closely with community services to develop understanding and link patients to suitable rehabilitation.
Suji Yathindra is a patient who has been through the UCLH clinic and credits them for helping him get back on track. The 45-year-old doctor had been working through the pandemic in an emergency department. He stayed in a hotel away from his family to be able to work without fear of infecting them.
In mid-May 2020, he developed Covid-19 symptoms and was assessed at his own hospital as well as another hospital and the investigations returned normal results. He was feeling a lot of stress as he felt so ill but had no identifiable reason for the illness.
He was having to be off work because he could not perform CPR without being exhausted. The UCLH clinic did some testing and revealed an abnormal physiological response to exercise. He has a rehabilitation plan and further investigations were planned to characterise the condition further.
Mr Yathindra said: “The clinic helped validate my illness. The team understood how frustrated I was and helped me get back on track. They organised an exercise routine and encouraged me throughout my journey back. They continue to organise investigations to look for a possible cure to my ongoing muscle pain and are in regular contact with me with helpful solutions.
“Without the clinic I am not sure I would have been able to return to work.”
The clinic has now expanded into three separate clinics for patients with Long Covid. The main clinic is under respiratory medicine and there is also a specialist clinic for neurological complaints and one for anosmia.
What is Wales’ Long Covid treatment like?
Currently, Wales does not offer any clinics or groups for patients with Long Covid.
According to members of Long Covid Wales, people with the condition are either speaking to their GPs – who may not have the necessary expertise on the topic – are dismissing their symptoms as something else because they may not have been hospitalised with Covid-19 in the initial illness or are just treating the presenting symptoms and not looking at the cause.
Dr Ian Frayling, president of the Association of Clinical Pathologists and honorary senior clinical research fellow, Inherited Tumour Syndromes Research Group, Cardiff University, said of the funding announced for Wales’ fight against Long Covid: “It seems it is all for primary care and they are specifically not funding any secondary care, i.e. consultant clinics or investigations in hospital, which fits their policy of keeping Long Covid out of hospital as, although we are equally deserving of treatment as those with delayed diagnoses of cancer, hip replacements etc, its our bad luck to be last in the queue and they wish we’d go away.”
A number of videos have been produced for GPs giving them guidance, but health professionals in the Long Covid Wales feel that these are not helpful at all and almost dismiss their symptoms altogether.
In one of the videos seen by the Argus, Owen Hughes, a psychologist, describes what the people with Long Covid are suffering from as chronic fatigue, but does not take into consideration the symptoms that are not related to chronic fatigue like myocarditis, endocrine failure and blood clotting.
It is also noted in the video that anxiety and depression may cause a patient to lack motivation to recover. This is disputed by Dr Frayling.
Dr Frayling, who himelf suffers from Long Covid, said: “I can tell you that you dearly want to get better, and that the anxiety and depression is the result of having a misunderstood disease without proper diagnosis or treatment that makes you anxious and depressed, and seeing a good doctor like Helen Davies and being properly investigated and diagnosed really does make it all better.”
Dr Frayling also highlights how because this is a new disease which is not fully understood. He said those who are presenting with hormone and heart problems are not “presenting in a ‘usual’ way for GPs. This is why this policy is phenomenally dangerous and stupid.”
Members of the Long Covid Wales group have met with the Welsh Government but feel their concerns and suggestions were not acknowledged and have since been offered no more meetings.
Would a Long Covid clinic work in Wales?
Dr Frayling saw Dr Helen Davies at Llandough and University Hospital, Cardiff, after seeing his GP relating to his symptoms. He had heard of Dr Davies who had visited and learned from a Long Covid clinic in Leeds and got an appointment with her.
“If I had not had the incredibly good fortune to be seen by a consultant in hospital, I would still be walking around, no doubt like many others, with clots in my brain,” he said.
“What struck my GP and senior neurologist when I told them my diagnosis was that I had not had the ‘red flag’ symptom of headache. I simply had the ‘standard’ brain fog, disturbed sleep and some other neurological niggles, which begs the question of how many others are out there undiagnosed and untreated?
“And moreover, would they not be diagnosed or treated if the policy now in place is adhered to?”
The Stroke Association has been conducting studies since March 2020 relating to the Covid virus and the risk of stroke.
The rate of strokes after Covid is approximately one in 50.
Dr Rubina Ahmed, Stroke Association research director, said: “There is growing evidence that people with more severe Covid-19 infection are at an increased risk of stroke compared to those with a milder case.
“In addition, people that have a stroke and Covid-19 are likely to be younger than expected. This could add up to a lot more people living with the devastating effects of stroke if Covid-19 patients do not receive the right treatment to manage stroke risk.”
The fact that Dr Frayling was able to see a consultant in Cardiff who had knowledge of the Long Covid clinics shows that it is possible that a clinic would work. With around 100 clinics in England, it has proven successful across the border – with some Welsh patients even travelling to take part in trials in some of these English clinics so that they can get some form of diagnosis and treatment.
In England, there is a referral system which is done by GPs but can be requested by the patients themselves when in discussion with their GP. Some also offer self-referrals.
Adopting this policy would not result in very much extra work for doctors as a referral system is in place for GPs to refer to specialists for other conditions.
The issue would be with funding ,and the potential of the NHS being overwhelmed may lead to a shortage of staff to be able to run the clinics.
If some of the £5 million given to educate frontline GPs on the signs of Long Covid is diverted into creating clinics, it will also allow for more in-depth investigation into the onset of the symptoms and the group believe the benefits outweigh the costs.
Georgia said: “GPs have a lot of things to look at in their training so they learn a bit about a lot and will go with what they know. Having a specialist for a specific problem, for example, respiratory conditions, will be able to look in-depth and work out the problems which would mean that more people would be on the road to recovery quicker.”