• Recognition that many Long COVID patients were not hospitalised.
• Guidance on treatment, management of symptoms and on rehabilitation support to 111 and 119 advisers, GPs and all clinical staff in frontline services and is essential for the delivery of quality care, and to end the dismissive attitudes reported by far too many people with Long COVID when they attempt to access health services. 
• A multi-disciplinary Long Covid taskforce, including researchers, professional bodies, and representatives of peer-led groups, to address the urgent needs of people living with persistent, ongoing symptoms of COVID-19.
• An update on plans for further research into the symptoms of Long COVID patients.
• Research to include: the natural history of COVID-19, risk factors and potential causes of Long COVID, exercise and Long COVID, diagnostic reliability, viraemia and ongoing or intermittent infectivity, impact of SARS-CoV-2 on different organs and therapeutic options for people with Long COVID
• Information about the timeline for commissioning these clinics and the time it will take to scale up and reach everyone who requires this service. 
•  NHS Long COVID clinics to be inclusive of quality mental health services.
• Clarity regarding how Long COVID patients will be involved in the development of health promotion and public health programmes, to help tackle the stigma and discrimination that many (people with Long COVID), experience, and address the complexity and uncertainty of current public health information.
• Greater Awareness-raising around the risk to young people of acquiring Long COVID.
• (In regard to healthcare workers) – protection of full pay, and guidance to line managers on how to handle absences and phased returns, support and advice for handling relapses and to flex to respond to the lived experience of those with this complex and evolving condition.

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.[2] 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.[3] Informed by patients we have also been highlighting the patient safety issues arising from this.[4]

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.[5] 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.[6]

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.

Please share your thoughts with us on the support that is needed on our patient safety platform, the hub.

References

1. NHS England and NHS Improvement, NHS To Offer ‘Long Covid’ Sufferers Help at Specialist Centres, 7 October 2020.  
2. 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.
3. 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.  
4. Patient Safety Learning, Patient safety concerns for Long COVID patients, 6 July 2020. 
5. 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.  
6. Patient Safety Learning, Clarity needed on post-COVID clinics: Patient Safety Learning's letter to NHS leader, 11 September 2020.

Dear Sir Simon,

I am writing to you regarding the support available for people with confirmed or suspected COVID-19 who are continuing to struggle with prolonged, debilitating and sometimes severe symptoms months later. These patients are sometimes referred to as ‘long-haulers’ or described as having ‘post-acute’, ‘chronic’ or ‘long-term’ COVID-19. Here, we will use the term ‘Long COVID’.

Patient Safety Learning

By way of a quick introduction, I am the Chief Executive of Patient Safety Learning, an independent charity and voice for improving patient safety. We believe patient safety is not just another priority; it is a core part of the purpose of health and social care. Patient safety should not be negotiable. Our aim is to reduce harm to patients from unsafe care.

Long COVID and patient safety

In July, we highlighted patient safety concerns around care and support for Long COVID patients with a number of key stakeholders and decision-makers in health and social care, along with a proposed set of actions to address these issues. We drew on patient experiences in this respect, two of which were shared on our patient safety shared learning platform, the hub, and which you may find of particular interest:

• My experience of suspected 'Long COVID'
• Dismissed, unsupported and misdiagnosed: Interview with a COVID-19 'long-hauler'

Subsequently, the NHS launched the ‘Your COVID Recovery’ online portal, which we welcomed as a positive step in recognising the need to increase the support for those recovering from COVID-19. 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 condition from home. Patients have highlighted that much of the ‘Your COVID Recovery’ site focuses only on those patients who have been in hospital.

Post-COVID clinics

On 8 September 2020, speaking at the Health and Social Care Select Committee the Secretary of State Matt Hancock MP stated:

“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.”[1]

We have found that there is significant confusion as to where these clinics are, what services they offer and who is eligible for support. As far as we are aware, there is no published list of post-COVID clinics. We have been inviting patients to share with us where these clinics are. Most responses are ‘we don’t know’. From our conversations with patients on social media and the hub we believe that the following information would provide greater clarity for Long COVID patients:

Location of these services

•  Publish a list of all existing post-COVID clinics and contact details.
•  Where there are regional disparities, set out plans to address these and avoid a postcode lottery. We note that a recent report from the BBC stated that less than 12% of the 86 Clinical Commissioning Groups asked were running such services and that the Royal College of GPs had called “for a national network of ‘post-COVID’ clinics”.[2]

Referral process

• Confirm whether Long COVID patients who have not been hospitalised can access these clinics by referral from a GP or self-referral.
• If by GP referral, confirm that these now been added to the e-Referrals System and publish the guidance issued to GPs on this process.

Eligibility and services available

• Clarify whether services at these clinics are restricted to those who have been hospitalised or also open to those who are managing their symptoms at home.
• Clarify whether these services are available to all patients or only those who have had a confirmed positive test for COVID-19. We are aware of a significant number of Long COVID patients who have not received a positive test and have expressed concerns about the lack of clinical recognition for their illness and access to appropriate medical support
• Confirm what services are available at these clinics. Will they help patients access a range of clinical investigations, as well as treatment and rehabilitation?

Second phase of ‘Your COVID Recovery’

• Publish the timeframe for the implementation of Phase 2 of the ‘Your COVID Recovery’ portal, described as a virtual rehabilitation platform offering patients interactive and tailored support. Initially, it was stated that the portal would launch “later in the summer”, therefore we ask for transparency about the cause of delay.[3]

I welcome your comments on these issues and look forward to your response in due course.

Yours sincerely,

Helen Hughes

Chief Executive, Patient Safety Learning