In this blog, Patient Safety Learning reflects on the recent steps taken by the healthcare system in the UK to increase provision and support for people living with Long COVID. It then goes on to consider the importance of engagement and information sharing with patients, outlining suggestions where Patient Safety Learning feel the current NHS approach could be improved.
Earlier this year we published a blog, setting out patient safety concerns around the care and treatment for Long COVID patients. This followed the peak of the first wave of the pandemic, when it started to become clear that there was a significant number of people with confirmed or suspected COVID-19 who were continuing to struggle with debilitating and sometimes severe symptoms months later. Our blog focused on those individuals that did not have an initial COVID-19 infection severe enough to be admitted to hospital, but instead managed their symptoms and recovery at home
Since the summer, there has been a growing degree of focus on the issue of Long COVID, with patient groups working hard to make their voices heard and an increase in research to better understand the causes, treatment options and likely outcome for people living with Long COVID. In the UK there has been a formal recognition from the NHS of the need for increased care and support for Long COVID patients.
In this blog, we will outline some of the key patient safety issues concerning Long COVID and recent steps the NHS has taken to increase provision and support for these patients. We will then focus on the importance of engagement and information sharing with patients, outlining suggestions on how we feel this needs to be improved.
Patient safety concerns for Long COVID patients
The National Institute for Health and Care Excellence (NICE) recently published a guideline defining Long COVID (which they refer to as Post-Covid-19 syndrome) as:
“Signs and symptoms that develop during or following an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body. Post-COVID-19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed.”
Many of those affected by this condition did not have an initial COVID-19 infection severe enough to be admitted to hospital, but instead managed their symptoms and recovery at home. We have highlighted on the hub, our platform for patient safety, the experiences and difficulties faced by patients in this position, such that of Barbara Melville and Dr Jake Suett. 
Drawing insights from patient experiences shared on the hub and by members of Long COVID support groups formed on social media, we highlighted a number of key patient safety issues that require action. One of the key issues is the need to start listening and learning from patients living with Long COVID, to help inform further research and to understand and address their support needs.
People living with Long COVID have told us of friends and family who do not believe the extent or impact of their illness, employers who are pushing them to return to work before they are physically ready and some doctors who don't believe that Long COVID exists. We are also hearing that many are unable to access financial support or benefits, despite being unable to work, which is understandably taking its toll.
Although there is now greater recognition of this condition, there remains worrying gaps in both clinical and public awareness; this is hampering efforts to effectively care and treat Long COVID patients.
How has the healthcare system responded?
From July onwards, the NHS has begun to put in place new support and guidance for patients living with Long COVID. Below is a brief timeline outlining some of the key developments to date:
- 5 July – The launch of the first phase of a new online rehabilitation service, Your COVID Recovery, is announced. The website went live at the end of the month. Initial information was general to those recovering from COVID-19, not specific to Long COVID patients.
- 7 October – The NHS announces a new five-part action plan to support Long COVID patients.
- 30 October – NICE and the Scottish Intercollegiate Guidelines Network (SIGN) set out the scope for developing formal guidance for managing the long-term effects of COVID-19.
- 5 November – The National Institute for Health Research (NIHR) and UK Research and Innovation launch a £20 million fund for research “into understanding, mitigating and addressing the longer term, physical and mental health effects, of COVID-19 in non-hospitalised individuals”.
- 6 November – NHS publishes new guidance on accessing and referring into a tailored rehabilitation programme, specifically for Long COVID patients, via the Your COVID Recovery platform. Also, referred to as ‘Phase 2’, this initially went live on 31 October, with plans for the service to be rolled out using a phased approach.
- 6 November – NHS published commissioning guidance to assist local healthcare systems to establish Long COVID assessment clinics.
- 15 November – NHS announce the launch of a network of more than 40 specialist clinics within the coming weeks to support patients.
Future activity (timescales yet to be confirmed)
- National rollout of Your COVID Recovery Phase 2 training to GPs.
- Publication of guidance on the referral by GPs of patients living with Long COVID to Your COVID Recovery Phase 2.
- Publication of guidance on the referral of patients to Long COVID clinics.
- Publication of guidance on patients receiving assessments by the Long COVID clinics and referral for diagnosis and treatment to secondary care.
- Publication of guidance on patients receiving assessments by the Long COVID clinics and referral for diagnosis and treatment to community-based rehabilitation and support services.
Greater clarity needed around support for Long COVID patients
Patient Safety Learning welcomes the progress that has been made since the summer to begin putting in place the support needed for Long COVID patients. In October, we were invited by the NHS to participate in their Long COVID taskforce and have been feeding back our views as an active stakeholder in this group.
However, while we understand the difficulties in responding to a complex new health condition, particularly within the pressures of the pandemic, we do feel that significant improvements could be made to how the NHS is engaging and communicating with patients.
As we describe in our report A Blueprint for Action, we believe it is vital that patients are effectively engaged in their care; there is clear research evidence that active patient engagement reduces unsafe care. This principle is recognised by the NHS, who have recently developed a new framework for involving patients in patient safety.
To ensure Long COVID patients are properly engaged in their care and receive access to the support that they need, we believe further action is needed in several areas.
Long COVID clinics
There are a range of unanswered questions about the future provision of Long COVID clinics. We had initially raised this issue with the NHS in September as a result of confusion stemming from comments by the Secretary of State for Health and Social Care, Matt Hancock MP, that these clinics were already up and running, despite no information in the public domain to this effect. 
In its most recent announcement on this issue, the NHS has now stated that there will be more than 40 of these specialist clinics opened across different regions of England in the coming weeks. We believe that it would be beneficial to provide Long COVID patients with greater clarity on this, specifically by:
- Publishing a list of the clinics by location.
- Announcing a more specific timeframe for completed roll-out. Currently available information only states that these are “due to start opening at the end of November”.
- Setting out plans to address regional disparities, should there be any, to avoid a post-code lottery of access.
- Explain the rationale for the chosen locations of Long COVID clinics.
Your COVID Recovery, Phase 2
When Your COVID Recovery was launched in July, the NHS stated that the second phase, in which people would be able to access personalised support packages, would be made available “later in the summer”. Guidance published at the start of November on the service stated that the second phase was live on 31 October and “rolled out using a phrased approach”. Meanwhile, recent reports in the Health Service Journal have indicated that this national roll-out will not take place until “at least January 2021, with no date confirmed for launch beyond that”. There is also a need for GPs to undertake specific training to be able to refer patients into the Phase 2 rehabilitation service. It is unclear how many practices have received this training to date, where they are located or how long it will take for this referral system to be available nationally.
The gradual shifting of the deadlines around this key pillar of support for Long COVID patients has not been clearly communicated. Patients waiting to access this NHS support do not have a clear idea of when they may be able to receive treatment. We believe that the NHS should:
- Provide clarity on the plans and expected timescales for rolling out training to GPs on the Phase 2 service nationally.
- Provide regular progress updates on the roll-out and availability of this service.
As it may be apparent from the timeline outlined earlier, much of the activity from the NHS to date has understandably been focused on the practicalities in setting up new support and provision for Long COVID patients. While this is undoubtedly important, we feel there is a clear gap in terms of communicating effectively with people living with Long COVID.
In looking to improve the availability of patient resources on this issue, Patient Safety Learning has developed a patient information leaflet aimed to help Long COVID patients understand what they can expect from their GP. This drew on earlier guidance issued by the Royal College of General Practitioners (RCGP) to healthcare professionals directly.
We hope this simple guide will empower and reassure patients, providing them with an evidence-based document that can be shared with those around them. We believe that this will also help raise awareness of the health challenges Long COVID patients are facing so that their health and recovery needs can be better met.
We believe this type of guidance should be being provided by the NHS directly to patients.
The necessity of a clear plan from the NHS for patient engagement
Patient Safety Learning believes that a clear plan from the NHS for engaging and communicating with Long COVID patients regarding the roll-out of support should include:
- NHS England and NHS Improvement and others working in partnership with people living with Long COVID and the public, to improve patient safety, patient experience and health outcomes; supporting people to live healthier lives. This would include a developed and published plan for patient and public engagement.
- Information for the healthcare system to inform the recognition, diagnosis and treatment of people living with Long COVID. Information for primary and secondary care, ambulance services and the 111 service, Royal Colleges, commissioners etc. This should consist of personal stories to outline the lived experience of patients and highlight the challenges that need to addressed, including how secondary care should be responding to GP referrals and how these services relate to the community-based ‘virtual ward’ initiatives being established.
- Information for people living with Long COVID that informs and empowers them: what services are being developed and when; how they will be able to access these services; what we know about Long COVID, its impact and how people might experience it; what research is being undertaken; how patients’ voices and experiences are informing the design of the system response; how people can access support, advice and resources from others such as employers, benefits agencies etc. We believe that there is an urgent wider need for this type of public information, separate to the second phase of Your COVID Recovery, which can only be accessed after a patient is referred by a GP.
- Information to wider society that will influence people’s attitudes and responses to those with Long COVID; information to employers, the benefits system, advice services (such as Citizen’s Advice, Healthwatch, Patients Association and others), media. Such information may also relate to the scale and impact of Long COVID and give advice around personal decisions on behaviours that could prevent people from being infected and infecting others.
- Information detailing how access to services and support for Long COVID patients may differ, depending which part of the UK they live in, and signposting to the most appropriate guidance in England, Northern Ireland, Scotland, and Wales, as appropriate.
It is vital that the NHS provides regular, up-to-date information for people living with Long COVID. This information needs to be clear, transparent and widely accessible, in accordance to the NHS Information Standard. We also believe there is a need to continue to raise awareness of Long COVID among all healthcare staff and the wider public so that patients suffering prolonged symptoms can be better supported in accessing safe, quality care.
14. Health and Social Care Committee, Oral evidence: Social care: funding and workforce, HC 206, 8 September 2020. 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”.