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LongCovidSOS Respond to the NHS 5 Part Package of measures to help Long Covid patients

You can read about the measures here


This feedback has been shared with NHS England



Thank you Professor Powis for responding to the Open Letter we sent in July and inviting us to work with NHS England to help draw up guidelines for people suffering from Long Covid, resulting in the 5 part package announced last week.

We launched the LongCovidSOS campaign in June to advocate for those people who did not recover in the standard 14 days and who were until recently the forgotten victims of the Covid-19 pandemic. One of the requests in our open letter was for all practitioners be empowered to treat Long Covid patients appropriately. We ran a survey in early September to capture people’s experiences with their GP, and found that many had been unable to obtain any practical advice or diagnostic tests. Some were told that they were suffering from anxiety or met with disbelief that they had ever had Covid-19. Only a quarter managed to secure an NHS referral to secondary care and the pathway was mainly through respiratory clinics despite diverse symptoms. Although some sufferers felt supported by their doctor, many felt they were being ignored and dismissed, so we are very pleased that the package includes NICE guidelines for assessment and clear referral pathways for Long Covid sufferers.

The whole-body nature of this disease requires a multidisciplinary approach. Early results from the COVERSCAN trial suggest that 40% have an injury to at least one organ and some have damage to multiple organs. The announcement that designated Long Covid clinics will be set up across England couldn’t come soon enough.

However we are unsure how the Your Covid Recovery service will complement these clinics and would be grateful for more information. During our meeting with Professor Singh it became clear that patients would not be eligible for any ‘rehabilitation’ services until serious pathologies are ruled out, and we support this approach; we understand that the prevalence of heart damage in Long Covid patients could make classic rehabilitation risky. Also, the relapsing and remitting nature of Long Covid doesn’t lend itself to graded exercise and goal-setting which is probably more appropriate for those who have been in hospital, and need to build strength for a gradual return to activity. Recovery is not linear and putting pressure on patients to reach targets could risk precipitating relapses.

So we see the new Long Covid clinics as the best solution for this condition, and hope that they will follow what we consider the ‘gold standard’ template set by UCLH. We hope that CCGs will not mandate fulfilling special criteria before allowing GP referral: rehab guidance published by NHS Improvement London includes a variety of referral pathways. We feel strongly that there should be no barriers to these clinics for patients suffering ongoing symptoms, and that they should be truly multidisciplinary in a one-stop shop format.

NIHR research described in the package is currently only for those who were hospitalised, whereas the majority of Long Covid sufferers were not. Evidence from China suggests symptoms and pathologies differ between these two groups. In order to examine the evolution of Long Covid it is imperative that funding is provided for research on community patients and that longitudinal studies are carried out; importantly we still lack a definitive answer to the fundamental question as to whether prolonged symptoms are due to residual viral activity or a prolonged immune response.

Demographic research is also urgently needed: we must now establish how many people have Long Covid in the UK and what proportion suffer for weeks, months or longer - something that we assume the ONS could provide. Symptom study apps have their limitations, and estimates vary by a factor of 10 – if we have hundreds rather than tens of thousands of sufferers then the potential impact on service provision is huge and the £10M investment will be inadequate.

A cohort this size of previously active contributors to the economy cannot be ignored. An unpublished survey of 1570 long haulers across a wide age band found that only 7% have been able to return to full time work without compromising their recovery. A third cannot work at all. Given recent infection rates we risk continued disruption to the workforce with a significant economic impact. Provisions need to be made for long-term sick leave and benefits: we have heard from people who have lost their jobs or are being forced back into work and risking further ill health.

To sum up: it goes without saying that the NHS England plans must be extended to cover the devolved health authorities. LongCovidSOS are working closely with the WHO to help them formulate guidance for countries where Long Covid remains unacknowledged. We are translating our film, which has been viewed over sixty thousand times and featured in news broadcasts around the world, into other languages to spread awareness across the globe. Activism in the UK and this positive response from government and the NHS has presented an opportunity for the UK to be world leaders in the management of Long Covid and if these plans are followed through it may be a response to the pandemic that we can be truly proud of.

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5 Comments


Ondine Sherwood
Ondine Sherwood
Dec 02, 2020

Hi steve_dutch - £20m of funding for research into non-hospitalised patients was announced last month - bids are going in right now and there will be some very big research projects starting in the new year

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Unknown member
Dec 02, 2020

It is infuriating, frustrating and debilitating that 'NIHR research described in the package is currently only for those who were hospitalised, whereas the majority of Long Covid sufferers were not'. I count my 'Day 1'of infection as the 8th March and I am still suffering, although, mercifully, (fingers crossed) not as badly as earlier on or for as long. Also, the periods in between of relative 'wellness' are longer.

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Unknown member
Oct 15, 2020

Like so many I had Covid in March when little was known and testing was not available to those who managed at home. I have now been off work for nearly 2 months, I managed to get a thoracic CT scan that has shown some lung damage but am struggling to get seen in secondary care. We are ahead of what could well be a tidal wave of similarly affected individuals over the coming months and years.

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Unknown member
Oct 14, 2020

I tested negative for covid, buy my original test was lost and I believe that I was probably clear by then. However, I suffer from myalgic encephalitis and fibromyalgia amongst other health issues, and have been ill for most of this year, especially with exhaustion. I also suffer with nausea, dizzy spells, aversion to sound and light, and several other ailments. I have also had extremely painful joints and terrible pains throughout my body. I don’t know if this is chronic fatigue syndrome or symptoms of long covid but I understand that there are many similarities. Keep up the good work!

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Unknown member
Oct 14, 2020

I'm so pleased we are now being listened to

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