Designing an NHS that’s #ThereForME

Reflections from a former health professional

Today’s post is from a former health professional with a master’s degree in clinical research —who is writing for us anonymously. She worked for over 15 years in the NHS, developing Long Covid and ME in 2021. She is not currently well enough to work. Her previous hobbies included cycling, running marathons and long hikes in the countryside. This post builds on many of the themes raised in our recommendations and views from the community on the forthcoming Delivery Plan for ME.

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In January 2021, I caught Covid-19 while working at an NHS hospital. The infection was picked up on weekly screening before any symptoms appeared and I hoped to be asymptomatic. Two days later, I became more unwell than I ever had before, but even after months without relief it didn’t occur to me this could turn into something chronic lasting years. I was young, fit and led an active lifestyle. Four years later I still don’t feel well. I continue to experience excessive fatigue, headaches, light sensitivity, nerve pain and post-exertional malaise (PEM—a worsening of symptoms after exertion). Like countless others I am unable to do simple day-to-day tasks without exacerbating symptoms, never mind enjoy previous hobbies.

When I first became ill, I naively assumed there were established clinics to investigate and deliver treatment for people who don’t recover from viruses. In reality, my first appointment at the Long Covid clinic involved routine bloods, a long afternoon beyond my activity tolerance and some leaflets. Months later there was a telephone follow-up, and I was discharged despite being relentlessly unwell. A couple of years later, I was eventually referred to a persisting symptoms clinic, where I was seen by a psychiatrist, told I met the criteria for an ME diagnosis, offered Cognitive Behavioural Therapy (CBT) or exercise, and then discharged.

The disappointment and frustration have been enormous. Most disturbing was learning what existing ME patients experienced before the Covid pandemic, why specialised medical services are lacking and how comparatively underfunded this field has been for biomedical research. For many other conditions, modern medicine has seen advances over time in knowledge of underlying mechanisms and treatments. Meanwhile post-viral conditions, including ME, have seen little progress to services or effective treatments. Instead, there continue to be ingrained biases, a culture of disbelief and a lack of understanding about the seriousness of the symptoms.

Without significant change ME patients will continue to be left behind. After 15 years working in the NHS and as a current patient, the following are my suggestions on why education of healthcare workers is important and what could be done to improve services.

Education to improve services

A key factor in improving patient services is education of healthcare workers. Despite ever-growing research published before and since the Covid pandemic, demonstrating pathophysiological changes in patients with both Long Covid and ME, outdated views around psychosomatic illness still exist. Like many, I was simply not listened to, my ongoing illness dismissed as burnout or stress.

While PEM is not a new phenomenon, doctors were unaware of it and how this differentiated my condition under the umbrella term of Long Covid. I have received responses from healthcare workers ranging from confusion and disbelief, to omission of Long Covid and ME from my notes. Recently, a doctor declared that CBT and Graded Exercise Therapy (GET) are effective treatments, that I wouldn’t get better if I didn’t want to and that by following advice against GET from the patient community I would never recover. This was alongside an admission they were not an expert.

As a trainee physio in the mid-2000s I had lectures on pathophysiology and rehab on a wide range of often less-debilitating conditions, affecting fewer patients. I have no memory of teaching on ME. If patients are to see change to biases, and ultimately effective treatment, education of trainees in university programmes and of existing healthcare workers is essential. This should cover up-to-date knowledge on the latest biomedical research, the impact of symptoms, infection control requirements and input from patients/carers on management strategies.

Online mandatory training was recently introduced on autism. Mandatory training and continuing professional development (CPD) modules could similarly be rolled out on ME and related post-viral conditions to address a widespread lack of understanding in the NHS.

I deteriorated due to outdated views and dismissal of the relevance of Long Covid and ME as co-morbid conditions when needing treatment for another problem. To ensure safe, accessible healthcare services, all health professionals across all disciplines need education on ME so that it is also safely managed as a comorbidity with the same seriousness as any other condition.

Actively educating trainees and staff could improve patient experiences and may also garner greater interest in the topic for future researchers and specialists.

What would a healthcare service that is #ThereforME look like?

As well as improving education, we need nationally revamped ME and post-viral services, under an appropriate specialism, using service models seen in other specialisms like cardiac care or cystic fibrosis. This requires far greater investment per patient to address historical inequality in funding for services and research. We need more opportunities for staff in both clinical and research positions. Multi-disciplinary teams (MDTs) and co-ordinators are needed, allowing clinical services to integrate research and focus on treatment delivery, including rehab (when appropriate and within a patient’s energy limits) and assistance with navigating benefits.

Setting up specialist centres and shared-care arrangements with local hospitals could ensure local provision where possible, support local teams and create designated ME leads within hospitals outside of specialist centres. Given the energy-limiting nature of ME, specialists could attend local clinics to reduce travel requirements for patients and help ensure accessibility. A sub-speciality is needed for severe ME, with flexible home-based care to make services accessible for this group. GP practices could also have a designated ME lead.

Patients, carers and charity representatives should be involved in how services are developed. Individual patients should be given choice and control over the structure of appointment days and the number of visits appropriate to their symptom management. We need to integrate specific testing protocols and assessment tools to build objective evidence, utilising existing knowledge and new research findings on potential biomarkers, and we need investment in home-based assessment.

To protect ME and Long Covid patients from further disablement we need mitigation against airborne infection. Clean air infrastructure within specialist clinics should be standard. Healthcare workers should be educated to recognise and understand infection control requirements, using masks to reduce risks.

Why change is needed

Despite a surge in patients with ME-like Long Covid, there’s been no obvious change or urgency to improve the health and lives of this historically neglected group. ME is a hugely complex, disabling condition. I am young, too ill and disabled to work, but not under any specialist care. We need significant change to knowledge and understanding among healthcare workers and radical change to our services, so ME and post-viral illnesses do not continue to be left behind.

We need an NHS that’s #ThereForME!