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Official statistics indicate there are currently hundreds of thousands of people living with Long Covid in the UK. Many of those who contracted Covid-19 at the start of the pandemic are still experiencing significant symptoms almost a year on from their initial infection; some have already passed that grim milestone.
Meanwhile, we can expect case numbers of Long Covid to rise significantly as people continue to become infected; recent data shows that at least 1 in 10 people still experience symptoms 12 weeks after initial infection.
The implications of Long Covid for individual patients, our health service and wider society are multifaceted, complex and likely to be long-term. There has been some progress to put in place support for people with Long Covid, but many are yet to receive help.
Patient Safety Learning and patient group Long Covid Support are calling for an urgent and significant increase in the scale and pace of the response, and a coordinated, multi-stakeholder approach. We are calling for this to be set up and led by a dedicated Minister for Long Covid, responsible for:
Patients living with Long Covid have been left ‘joining the dots’ to try to understand how they can access safe, quality care and what they can do to improve their health. Their physical and mental health, employment and economic circumstances have, in many cases, been affected by the barriers they have faced.
Those living with Long Covid have highlighted a number of concerns, from which we have identified eight key themes:
1) Inconsistent care and contradicting advice
2) Employment and welfare
3) Children with Long Covid
4) NHS workforce and resource planning
5) Knowledge gaps among health professionals
6) Data, research and insight gaps
Including, but not limited to, the following:
7) Public health messaging not reflective of Long Covid
8) Communication and engagement gaps
We are calling on the Prime Minister to appoint a Minister for Long Covid. This role would be responsible for coordinating a UK cross-government task force, accountable for broad oversight and action relating to the Long Covid crisis. This multi-stakeholder approach would go far beyond the remit of the current NHS England Task Force for Long Covid.
To respond to the broad spectrum of issues, we would anticipate that this Task Force would involve collaboration between officials from departments across the government, including:
There is an urgent need for a Long Covid communication and engagement strategy, to include information and updates for patients, clinicians, relevant organisations and the public.
This needs to be a genuine two-way process with proactive action to inform, support and educate, and to obtain feedback from all relevant parties. The effectiveness of these communications must be monitored to ensure that key stakeholders are receiving the information and guidance they need to support people living with Long Covid.
Patient engagement is proven to be a key factor in designing effective services and improving clinical outcomes; it should never be viewed as ‘nice to have’ or applied in a tokenistic way. Those with lived experience of Long Covid must be seen as partners at every step of the response, with a clear involvement strategy to ensure that decisions ‘about them’ are not made ‘without them’. To undervalue this input would be incredibly short-sighted and would contravene NHS policy.
The Task Force should be responsible for delivering the communication and engagement strategy to help address the concerns we have outlined in the eight themes. Engaging with organisations outside of the Cross-government task force will be essential and should include:
More must be done to ensure that people living with Long Covid are able to access safe, quality care and that every effort is made to empower those around them to support their recovery.
We believe that a multi-stakeholder approach, led by a dedicated Minister, is key to responding to, and planning for, the growing challenges of Long Covid. The current absence of oversight and accountability poses a risk to patients and must be addressed urgently.
 Office for National Statistics, The prevalence of long COVID symptoms and COVID-19 complications, 16 December 2020. https://www.ons.gov.uk/news/statementsandletters/theprevalenceoflongcovidsymptomsandcovid19complications
 Torjesen, Ingrid, NICE cautions against using graded exercise therapy for patients recovering from covid-19, BMJ 2020; 370:m2912. https://www.bmj.com/content/370/bmj.m2912
 Health and Service Executive, Long Covid and the Workplace: What does the evidence support in terms of intervention, 13 January 2021. https://www.contractsfinder.service.gov.uk/Notice/bcb0ea50-41c3-4d19-a4e1-9d1d1a429359?utm_medium=email&utm_campaign=2021-01-14&utm_source=SavedSearch
 Torjesen, Ingrid, NICE backtracks on graded exercise therapy and CBT in draft revision to CFS guidance, BMJ 2020; 371:m4356. https://www.bmj.com/content/371/bmj.m4356
 #ME Action Network, Long COVID Patients Warned Of Damaging Exercise Programme, 3 November 2020. https://www.meaction.net/2020/11/03/long-covid-patients-warned-of-damaging-exercise-programme/
 Tuller, David, Trial By Error: Professor Paul Garner’s BMJ Blog Post on His Powerful Cognitions, 28 January 2021. https://www.virology.ws/2021/01/28/trial-by-error-professor-paul-garners-bmj-blog-post-on-his-powerful-cognitions/
 The Guardian, Many ‘long Covid’ sufferers unable to fully work six months later, 5 January 2021. https://www.theguardian.com/society/2021/jan/05/many-long-covid-sufferers-unable-fully-work-six-months-later
 People Management, Should HR be worried about long Covid?, 28 January 2021. https://www.peoplemanagement.co.uk/long-reads/articles/should-hr-worried-long-covid?fbclid=IwAR3CSblxfQYrhdyXc0oRgU_DJsztoaDUEsLpz2OuRMOaHJ1Rq-QEHp3XFQQ
 University of Cambridge, Video: Long Covid Kids – 5 News, 24 November 2020. https://paediatrics.medschl.cam.ac.uk/blog/2020/11/24/video-long-covid-kids-5-news/
 NHS England and NHS Improvement, NHS to offer ‘long covid’ sufferers help at specialist centres, 7 October 2020. https://www.england.nhs.uk/2020/10/nhs-to-offer-long-covid-help/
 Royal College of General Practitioners, Management of the long-term effects of COVID-19, 30 October 2020. https://elearning.rcgp.org.uk/pluginfile.php/149508/mod_page/content/72/V2GA%20for%20publication%20updated%20Management%20of%20the%20long%20term%20effects%20of%20COVID-19_formatted_29.10.20.pdf
 The BMJ Opinion, Counting long covid in children, 16 October 2020. https://blogs.bmj.com/bmj/2020/10/16/counting-long-covid-in-children/
 NHS England and NHS Improvement, NHS England Patient and Public Voice Partners Policy, July 2017. https://www.england.nhs.uk/wp-content/uploads/2017/08/patient-and-public-voice-partners-policy-july-2017.pdf