A panel of experts joined Connect Health’s latest Change webinar – entitled Long Covid Rehab – the long road to recovery? – on Wednesday (29 September), to discuss the current challenges facing healthcare providers in supporting those experiencing persistent, debilitating symptoms following COVID-19 infection.
The session underlined a need for greater understanding towards sufferers and a holistic, personalised care approach – within a challenging, evolving landscape of limited research and resources.
Personal experience and anecdotal evidence discussed during the session suggests that Long COVID sufferers can feel that their symptoms aren’t always acknowledged or validated by friends and family – sometimes told ‘it’s all in their heads’. This can be exacerbated by the fact that diagnostic tests, when offered, often don’t provide an explanation for symptoms such as breathlessness and fatigue.
The debate therefore pointed to an urgent need for care plans to be individually tailored to patients, taking into account the unpredictable nature of Long COVID. Physical exercise, for example – often seen as a positive step in improving health after illness – can trigger relapse in some sufferers, resulting in recovery setback.
Panel member Karen Bradbury, Regional Clinical Lead, Connect Health Pain Services, also suggested that a national reform of sick pay could be necessary, flagging that typical, short ‘phased returns’ to work after illness need to be re-assessed for Long COVID sufferers:
it’s not a case of three days or three weeks, it’s more like three months [the time period of a phased return needed after COVID].
A recent study indicated that almost half (45.2%) of people with Long COVID require a reduced work schedule compared to pre-illness, and around a fifth (22.3%) have to stop work completely due to ongoing ill health.
Alongside Karen Bradbury, the panel featured Rachael Moses, Consultant Respiratory Physiotherapist and President-Elect, British Thoracic Society; Dr James Hull, Consultant Respiratory Physician, Royal Brompton Hospital; Dr Razia Bhatti-Ali, Consultant Clinical Psychologist, Connect Health Pain Services and Steve Tolan, Allied Health Professions Lead and Long COVID Programme Lead for London Region, NHS England & NHS Improvement.
The webinar – which was the most subscribed of the Connect Health Change series to date, attended by around 400 people – was chaired by Dr Ian Bernstein, Director of Medical Education, Central London Community Healthcare NHS Trust, MSK Physician Connect Health.
Rachael Moses gave an overview on the current status of Long COVID from a clinical physiotherapy perspective, with a focus on fatigue. She highlighted the recent data that showed that fatigue, malaise and cognitive dysfunction are the most common symptoms of Long COVID sufferers, and that relapses are highly common. Discussing the data, she said:
86% of respondents experienced relapses – primarily triggered by exercise, physical or mental activity and stress.
While large numbers of people will return to normal activities within a short period of time post COVID-19 illness, a number may take longer to recover. Rest has been proven to support recovery and while keeping active is really important so is pacing to avoid overexertion and relapses. Asserting that “a real multi-system, holistic assessment is essential” for patient recovery, Rachael highlighted how exercise should only be recommended as a rehabilitation intervention for people not experiencing fatigue (and/or an exacerbation of symptoms post-exertion).
Dr James Hull discussed the prevalence of breathing problems and breathlessness in Long COVID patients, explaining how patients are often left searching for answers about their “unpredictable and devastating” condition.
There is a disconnect between people’s breathlessness and what you might find on objective tests…the individual who is struggling is repeatedly told that the tests don’t show any abnormality and that this should simply be enough to reassure them, when of course it isn’t.
Razia Bhatti-Ali spoke of her own experience of living with Long COVID. Razia and her daughter both contracted COVID-19 at the start of the year. She developed ‘flu-like’ symptoms but seemingly recovered well, until she began experiencing blurred vision, fatigue, anxiety, low mood and body aches. Razia feels that support for Long COVID sufferers is lacking, and that her own recovery may have been quicker if she’d been more open with others and had support outside of her immediate family.
She said:
I’ve always seen myself as a healthy person; I told myself that I should have recovered by now. I realised I need to be kinder to myself.
Some patients [I’ve spoken to] were aggrieved that they were not getting any help from their GP…and that [they were advised] the virus needed to run its course. Some patients said their families were telling them ‘it’s all in your head’. Many patients said they were being dismissed with a label of anxiety; they felt unvalidated.
Steve Tolan spoke of the national challenge of delivering Long COVID support, giving an overview of the complex network that was initially launched in its set-up phase in September 2020.
He said in an emerging and changing picture, the biggest challenge of operational delivery was workforce capability and capacity:
The opportunity is to use some ingenuity and use the wider workforce, community assets, patient groups [and] digital resources as well.
Additional challenges in providing the right support include having a limited research base. Steve outlined how patient self-reporting is largely digital, excluding many, and that there’s also a risk of ‘diagnostic overshadowing’ – where Long COVID symptoms may not be recognised because of other health or social conditions.
Karen Bradbury was the final speaker of the event and outlined her work in developing and delivering a community Long COVID support programme, focusing on self-management.
She said:
As there is no diagnostic test for Long COVID…we took an alternative approach and built our service from the bottom up, speaking to patients, colleagues with lived experience and others…to get a real understanding of the issues patients were facing and agree on appropriate referral criteria. We asked people how we could help them – overwhelmingly, fatigue was the main issue but adjustment to life after COVID was a big struggle.
The main theme [of patient issues] was being believed and being listened to, dealing with health professionals and with work – and having a real plan to recalibrate life, both in the short term and long term.
Karen added:
Every case is individual; we cannot prescribe ‘one-size-fits-all’.
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