Patients being “dismissed and not listened to by healthcare professionals”
Key themes from the session included the desperate need for integrated, multi-speciality, multi-disciplinary care and the importance of acknowledging the sufferings of long COVID patients who often have to “fight their way through the system”. There was strong support for working with patients to co-design services and support research.
Frustrations around the nation’s current lack of support for rehabilitation in general and therefore “inadequate” rehabilitation services were raised. As was the need for mental and physical health to be treated together, rather than in isolation to one another.
The event was chaired by Matthew Wyatt, Consultant Physiotherapist & Clinical Lead (South) Connect Health and Associate Director (Clinical Excellence) MSKReform.
Speakers included Dr Emma Ladds, General Practice Academic Clinical Fellow, Nuffield Department of Primary Care Health Sciences, University of Oxford and Prof Trish Greenhalgh, Professor of Primary Care Health Sciences and Fellow of Green Templeton College at the University of Oxford.
Joining them was Dr John Etherington CBE, ex National Clinical Director for Rehabilitation with NHS England, current President of The Faculty of Sport and Exercise Medicine UK, Medical Director Pure Sports Medicine and Jack Chew, Physiotherapist and Director of MSKReform.
Setting the scene, Dr Ladds gave an overview on what the condition is, the perceived impact on the population and the symptoms of Long COVID. She continued by sharing her views on the implications for primary care, explaining the differences that could be made to support patients and concluding her segment with:
There’s an enormous need that’s going currently unmet.
When asked by Connect’s Matthew Wyatt what her “top tips and advice would be for a consultation with Long COVID patients in primary care,” Dr Ladds highlighted distressing conversations she’d had with patients who felt they’d been dismissed or not listened to by healthcare professionals, including GPs.
One of the challenges is that every patient presenting with Long COVID can present differently. So, really listening to them, hearing their story and not dismissing them is important.
Following the research undertaken with 100 Long COVID patients, Prof Trish Greenhalgh warned that “coming out loud and clear” is that:
“The current services in most places are not adequate to meet people’s needs.”
In consultation with these patients, Prof Greenhalgh explained six principles for a Long COVID service were raised. The A-F principles cover:
- Access to services. How presently, people can’t access some kind of COVID service.
- Burden on the patient. Particularly those having to “fight their way through the system” when there should be a straightforward referral system.
- Clinical responsibility and continuity of care. One person to follow up and take responsibility for that patient’s care.
- Disciplinary in multi-disciplinary care.
- Evidence-based standards.
- Further research.
Based on these principles, Prof Greenhalgh explained that a four-tier services programme has been proposed. The first tier looks at self-management – tapping into existing resources. The second tier is primary care support with community-based rehabilitation. The third tier is specialist assessment and rehabilitation, particularly for patients who have ongoing breathlessness, severe fatigue, and severe interference with daily living. Finally, the fourth tier focuses on the care of those with very rare, but very serious complications.
From our interviews with people suffering from Long COVID, there is a desperate need and an urgent need for a rehabilitation service which operates at various levels, has proper referral pathways, is accessible to patients and where the patient doesn’t have to fight their way in,” Prof Greenhalgh concluded.
With a background in military rehabilitation, Dr Etherington CBE joined the debate advocating the development of a COVID rehabilitation programme and summarised the wide ranging and complex impact of Long COVID on areas including pulmonary, respiratory and neurological health, and mental health.
“We have no culture of rehabilitation in the UK, as far as I’m concerned”, Dr Etherington stated.
To put it in context, in England we have only 950 specialist commissioned beds for rehabilitation and about 20% of those are set aside for trauma. In addition to that, there’s a lack of capacity in the system. We have a commissioning structure that arbitrarily separates specialised commissioning from community services and non-specialised services and, that’s for the same patient on the same pathway. In that context, where we’re not used to rehabilitation to then say ‘well we may have 40,000 – 100,000 people who are requiring rehabilitation for a disease we don’t really understand’, is not getting a lot of traction, I would argue, in the NHS.
“If you look at other countries, such as Germany, there is a better acceptance of rehabilitation being needed for all types of illness and injury. Indeed, there are COVID rehabilitation pathways in Germany which are commissioned through the German health and work insurance, which are being used. I’m not sure we’re in that particular position.”
When exploring what is being done to provide for these patients, particularly in England, Dr Etherington raised the point that £10million has been allocated for post-COVID syndrome assessment clinics. However, he highlighted that it is only for signposting purposes rather than supporting with actual rehabilitation capacity.
Sharing he has found “the last six months very frustrating in terms of having conversations about this within the NHS”, Dr Etherington stressed that “there’s a lot of difference between providing guidance and having support and operationalising any service”.
We need to assess people properly, that will require expertise and equipment and we need to be able to set goals for people and monitor their outcomes and for them to be properly measured. Particularly in the period we’re in now, we need to use occupation as an outcome – getting people back to occupation and to their paid employment, is going to be really important.
Sharing his frustrations that “there’s too much of us thinking about mental health as a separate issue to a physical debility”, Dr Etherington later explained that rehabilitation in the UK doesn’t get the proper recognition it deserves, particularly at this critical time for “managing the health of this nation and our economy and reducing the burden on the economy.”
Explaining that there is a real return on investment for rehabilitation, he cited studies in Germany which highlighted a ratio return of at least 5:1, thanks to improving physical and psychological outcomes which reduces areas including the cost of medical interventions, the demands people place on social benefits and social care costs while increasing tax and productivity. He concludes:
There’s clearly an argument and need to do this and I think the problem is we don’t know who to talk to, to get this to change. Simply putting a bit of guidance on a website and activating assessment clinics, I don’t believe addresses the full needs of the patients we see.
Jack Chew was the final speaker, exploring the role of Rehab Recruits – specifically, the role he played in positioning MSK therapists as efficient and strategic professionals for rehabilitation deployment in the NHS. Jack recalls how he looked at the MSK community and how the professions within MSK could be optimally placed to support during the pandemic – trying to identify in a MSK capacity, what is the skillset and the commonalities that could help COVID patients outside an acute setting. Helping those Jack terms ‘COVID-displaced patients’ for whom their care had been disrupted and their function impaired.
Exploring the questions “What are the common aspects across the MSK professions that we can lean into” and “what can we offer as way of a unified workforce” Jack’s thinktank led on a ‘Rehab Recruits’ policy which resulted in thousands of clinicians agreeing to be deployed within the NHS to help with rehabilitation of COVID patients.
As Jack explained, this ‘Rehab Recruits’ initiative ended abruptly:
It’s not just about what the clinical needs are, or the clinical workforce’s abilities, it then becomes operational and governance based. We encountered the barrier that it was all well and good in theory, but in practice, the application of that workforce and the recognition of that clinical skillset does not necessarily get agreed with by the powers that be. It therefore can’t be implemented, in part because, ‘do the powers that be even comprehend what I’ve just described’, which is scaled-functional rehab being at the heart of, not just MSK care but also just generally what it means for rehabilitation.
Jack concluded that there is a “clear miscomprehension on the utility of MSK professionals,” but that “the MSK workforce is in a very good place to be able to assess and at least triage for the treatment they’re not appropriate for.”
Watch the webinar again, which includes further insight from the speakers including a full Q&A session, and read more about the speakers here: