Patient Safety Learning’s response to the announcement by the NHS on the 7 October 2020 of a new five-part package of measures to boost support for Long Covid patients.
Speaking at the NHS Providers conference today Sir Simon Stevens, Chief Executive of the NHS, announced that £10 million will be invested into additional local funding "to help kick start and designate Long Covid clinics in every area across England".
Patient safety concerns for Long COVID patients
Long Covid patients are people with confirmed or suspected Covid-19 who continue to struggle with prolonged, debilitating and sometimes severe symptoms months later. Many were never admitted to hospital and have instead been trying to manage their symptoms and recovery at home.
At Patient Safety Learning we have seen growing evidence that there are many patients suffering from long-lasting symptoms of Covid-19 who are feeling abandoned, confused and without support. We have featured patient insights of this on the hub, our platform for patient safety, such as the experiences of Barbara Melville and Dr Jake Suett. Informed by patients we have also been highlighting the patient safety issues arising from this.
In September we heard from many Long Covid patients who have expressed confusion about access post-Covid support clinics. This followed comments from the Health Secretary Matt Hancock MP at the Health and Social Care Select Committee in which he suggested this support was already available. We wrote to Simon Stevens calling on the NHS to publish details of post-Covid support clinics and confirm the timeframe for the implementation of Phase 2 of the ‘Your Covid Recovery’ support portal.
Reflections on today’s announcement
The NHS announcement today sets out a five-part package of support people living with Long Covid:
1. New guidance commissioned by NHS England from NICE by the end of October on the medical ‘case definition’ of Long Covid. 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.
We welcome this measure and plans to update guidance so that it includes patients who may not have had a hospital admission or a previous positive test. We have heard from patients who have expressed their frustrations around the lack of clinical recognition of their illness, exacerbated by receiving a negative test result.
This new guidance should enable health care providers in primary and secondary care to properly capture information about patients that have Long Covid. This should help to create a better understanding of how many patients are experiencing this disease and the services they are receiving. It will also be essential to ensure that service providers are appropriately funded to support these patients.
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.
From our conversations with patients and community support groups, we are aware that concerns remain about the availability of support for those who have been managing their symptoms at home. Patients have highlighted that much of the ‘Your Covid Recovery’ site focuses only on those patients who have been in hospital.
It is essential that patients that are living in the community with Long Covid can access advice and guidance specific to their needs. We are concerned that access to information and advice is only accessible through GPs or another healthcare professional following assessment. We need to ensure that this referral route does not become a barrier to Long Covid patients having the information and advice they need.
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.
We welcome this commitment to a one-stop shop approach to support for Long COVID patients. It is important that we recognise that patients may need to access a wide range of services and that patients who are unwell should not have to move between different clinical specialities to get diagnosis and treatment related to their personal needs.
The £10m initial investment is to be welcomed as is the national specification; it is important that we do not have a postcode lottery of services. As the infection rate increases, so will the number of patients with Long Covid. The investment in services will need to match patient need, both initial assessment and diagnosis and access to specialist treatment, support services and ongoing rehabilitation.
We also note that these appear to be England-only measures and would be keen to clarify what steps are being put in place to support patients in the other three nations of the UK.
4. NIHR-funded research on Long Covid which is working with 10,000 patients to better understand the condition and refine appropriate treatment.
This is welcomed and should inform the development of clinical pathways and best practice guidelines.
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.
This is a new disease and we do not yet understand how best to support patients with Long Covid. We believe that a multi-disciplinary task force that engages and welcomes patients' insights is essential.
What are your thoughts?
Further to our initial reflections on this, we would be keen to hear from people living with Long Covid on their thoughts on this announcement.
- NHS England and NHS Improvement, NHS To Offer ‘Long Covid’ Sufferers Help at Specialist Centres, 7 October 2020.
- The symptoms for those with Long COVID vary greatly but many are experiencing rashes, shortness of breath, neurological and gastrointestinal problems, abnormal temperatures, cardiac symptoms, and extreme fatigue.
- Barbara Melville, Dismissed, unsupported and misdiagnosed: Interview with a COVID-19 ‘long-hauler’, Patient Safety Learning’s the hub, 24 June 2020; Dr Jake Suett, My experience of suspected ‘Long COVID’, Patient Safety Learning’s the hub, 10 July 2020.
- Patient Safety Learning, Patient safety concerns for Long COVID patients, 6 July 2020.
- Rt Hon. Matt Hancock MP commented in a select committee that “The NHS set up Long COVID clinics and announced them in July. I am concerned by reports this morning from the Royal College of GPs that not all GPs know how to ensure that people can get into those services. That is something I will take up with the NHS and that I am sure we will be able to resolve”. Health and Social Care Committee, Oral evidence: Social care: funding and workforce, HC 206, 8 September 2020.
- Patient Safety Learning, Clarity needed on post-COVID clinics: Patient Safety Learning's letter to NHS leader, 11 September 2020.