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NHS to offer ‘long covid’ sufferers help at specialist centres

Updated: Oct. 8, 2020, 10:24 a.m.

People suffering ‘long covid’ symptoms will be offered specialist help at clinics across England, the head of the NHS announced today.

Respiratory consultants, physiotherapists, other specialists and GPs will all help assess, diagnose and treat thousands of sufferers who have reported symptoms ranging from breathlessness, chronic fatigue, “brain fog”, anxiety and stress.

Increasing medical evidence and patient testimony is showing that a small but significant minority of people who contract Covid cannot shake off the effects of the virus months after initially falling ill. Some estimates suggest that 10% of Covid patients may still be experiencing symptoms more than three weeks after infection, and perhaps 60,000 people could be suffering from long covid symptoms after more than three months.

Speaking at the NHS Providers conference today (Wednesday), NHS chief executive Sir Simon Stevens will announce that £10 million is be invested this year in additional local funding to help kick start and designate long covid clinics in every area across England, to complement existing primary, community and rehabilitation care.

Sir Simon said new network will be a core element of a five-part package of measures to boost NHS support for long covid patients:

  1. New guidance commissioned by NHS England from NICE by the end of October on the medical ‘case definition’ of longcovid. This will include patients who have had Covid who may not have had a hospital admission or a previous positive test. It will be followed by evidence-based NICE clinical guidelines in November on the support that long covid patients should receive, enabling NHS doctors, therapists and staff to provide a clear and personalised treatment plan. This will include education materials for GPs and other health professionals to help them refer and signpost patients to the right support.
  2. The ‘Your Covid Recovery‘ – an online rehab service to provide personalised support to patients. Over 100,000 people have used the online hub since it launched in July, which gives people general information and advice on living with long Covid. Phase 2 of the digital platform being developed this Autumn by the University of Leicester will see people able to access a tailored rehabilitation plan. This will enable patients to set goals for their mental and physical health, provide peer to peer support through social community forums, offer an ‘ask the expert’ facility for patients to contact their local rehab service, and allow patients to be monitored by their local rehab teams to ensure that they are on track with their care.
    This service will be available to anyone suffering symptoms that are likely due to COVID-19, regardless of location or whether they have spent time in hospital. It is most likely that patients will access the service through their GP, but they could also be referred through another healthcare professional following assessment.
  3. Designated Long Covid clinics, as announced today. This will involve each part of the country designating expert one-stop services in line with an agreed national specification. Post-covid services will provide joined up care for physical and mental health, with patients having access to:
    – A physical assessment, which will include diagnostic testing, to identify any potential chronic health issues.
    – A cognitive assessment, to assess any potential memory, attention, and concentration problems.
    – A psychological assessment, to see if someone is suffering potentially from depression, anxiety, PTSD, or another mental health condition.
    Patients could also then be referred from designated clinics into specialist lung disease services, sleep clinics, cardiac services, rehabilitation services, or signposted into IAPT and other mental health services.
  4. National Institute for Health Research (NIHR) funded research on long Covid which is working with 10,000 patients to better understand the condition and refine appropriate treatment.
  5. The NHS’s support will be overseen by a new NHS England Long Covid taskforce which will include long covid patients, medical specialists and researchers.

NHS chief executive Sir Simon Stevens said: “While this is still a relatively new virus, we are learning more about covid with every passing week. It is now clear that long covid can have a major impact on the lives of a significant minority of patients weeks or months after they have contracted the virus. So just as the NHS quickly put in place specialist hospital care for acutely ill Covid patients at the start of the pandemic, now we must respond sensitively and effectively to these new patient needs.”

Professor Chris Brightling, Professor of Respiratory Medicine and Consultant Respiratory Physician University of Leicester and UHL NHS Trust, said: “Following Covid-19 infection, some people have persistent and debilitating symptoms including fatigue and breathlessness known as long covid. Sufferers need a coordinated approach to their care and rehabilitation so this proposed plan is most welcome.

“Long covid research studies are essential in understanding the reasons for the variable consequences of the disease to identify those at risk and to test new treatments.”

The new services will follow the launch of the long covid clinic at University College London Hospital earlier this summer where they have treated over 900 people with long Covid symptoms, including those who were not admitted to hospital with the illness. Patients at UCLH may also be given Cardiopulmonary Exercise Testing (CPET), a 40 minute test which includes patients performing graded exercise on an upright bicycle breathing into a mouthpiece to test lung strength.

UCLH Chief Executive, Professor Marcel Levi, said: “The UCLH post-covid clinic has seen 900 patients since mid May. We support moves to increase access for the growing patient groups with post-COVID-19 symptoms and the efforts to treat and rehabilitate patients who are often young and their quality of life has been seriously impacted. There is a growing need to understand and offer access to care especially when, as a new illness, many struggle to access adequate care through traditional routes.”

In response to the announcement, Ondine Sherwood of LongcovidSOS, said: “LongCovidSOS welcome this announcement from NHS England. We believe that multi-disciplinary clinics are essential for the assessment, treatment and rehabilitation of the huge numbers of people still suffering the effects of COVID-19. We hope that clinical guidance from NICE will ensure that necessary referral pathways are in place and that general practitioners are empowered to treat patients with long covid appropriately.”

Tim Spector, Professor of Genetic Epidemiology at King’s College London (KCL), and lead investigator of the ZOE KCL COVID Symptom Study app, said: “We are glad that the need to help long Covid sufferers has been recognised. Using clinical data from the over four million people who downloaded the COVID Symptom Study app run by ZOE and KCL, we have a unique insight into the long-term problems suffered by COVID-19 patients who didn’t go to hospital. Our data shows us that over one in 10 still have problems a month on and around one in 50 are still suffering after three months. Long covid sufferers experience a broad range of symptoms, which include up to 20 different problems and not just the three ‘classic’ symptoms used for diagnosis. This tells us that this is a multisystem disease that requires a multi-disciplinary approach to treatment.

“The COVID Symptom Study will be working closely with the Royal College of General Practitioners (RCGP) to provide educational materials on all the symptoms. There are plans to provide an early assessment of those at high risk of long covid and severe disease via the app. We will also be providing NHS England with better data for the public on this new disease and working to identify volunteers for early intervention trials. We want to encourage everyone to download and use the COVID Symptom Study app to continue providing the NHS with vital information about this mysterious but devastating disease.”

Health and Social Care Secretary Matt Hancock said: “Long covid can have a huge impact on people affected. So we are doing everything we can to support people who are still suffering with effects on their health.

“Since May, rehabilitation facilities and recovery services have been available to those who have suffered with the virus and I am delighted to see these becoming more accessible with the opening of specialist clinics right across England.

“Combined with further research and the new NHS England Long Covid taskforce, these additional services will ensure people get the care they need, improve lives and aid in the fight against this global pandemic.”