May 2021
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This conference focused on the ongoing research into the long-lasting effects of COVID-19, and the priorities for coordinating effective care provision and treatment.
The conference followed NICE guidance being published on managing the long-term effects of COVID, and NHS England setting up long COVID assessment centres across the country.
Key areas for discussion included:
- the progress of research so far and priority focus areas going forward
- the development of guidance for long COVID
- improving patient awareness, supporting self-management, and the importance of patient-centred care delivery
- the role of long COVID assessment centres and early lessons from their development
- supporting primary care in responding effectively to long COVID, integrated working, and priorities for the use of multidisciplinary teams in assessment and rehabilitation
The discussion brought together stakeholders with parliamentary pass-holders from the House of Lords, and key policy officials who attended from DHSC; the DoH, NI; the MHRA; DWP; the HSE; DfT; the FCDO; and the UK Statistics Authority.
The agenda
- The development of guidance for managing the effects of long COVID
- Progress of long COVID assessment centres in meeting local population needs
- Delivering multi-disciplinary assessments, working collaboratively, utilising specialist skills, coordinating local provision, and patient-centred care
- Priorities for supporting primary care in the delivery of effective long COVID provision
- Long COVID patient priorities for care and support
- Identifying groups affected by long COVID, and channelling care and support towards those who need it most
- Assessing the progress of long COVID rehabilitation so far and next steps for improving delivery
- Evaluating the long-term impact of long COVID as part of the national response to the pandemic
- National research efforts into long COVID so far and key priority areas going forward
Key areas for discussion:
- research:
- progress - understanding the long-term effects of COVID, and the impact on hospitalised and non-hospitalised patients, as well as understanding the groups more likely to develop long COVID
- recovery - priorities and progress for research into treatments for long COVID symptoms
- vaccine - priorities for further evidence to understand the potential for a vaccine to improve symptoms in long COVID sufferers
- patient engagement - including in:
- the process of determining the priority areas for research into long COVID going forward
- understanding the risk groups, developing interventions, and improving general understanding of the prevalence of long COVID across the country
- guidance:
- in the midst of the pandemic - keeping pace with priorities during a public health emergency, including the process of review and updating as understanding improves
- assessing the approach - looking at information and methods used to develop the guidance, and any areas that require increased focus over the coming months
- patient awareness, support and self-management:
- awareness - development of materials and information to improve understanding of the long-term effects of COVID, and tackling misinformation
- support - priorities for accessibility and engagement with vulnerable groups, as well as those who are digitally deprived or otherwise disadvantaged, and ensuring information on symptoms and available support is available
- self-management - including the development of Your COVID Recovery, looking at uptake and use so far, and indications that it is effective in helping patients with their recovery process
- patient-centred care - best practice for involving the patient in care decisions and examining practicalities, as well as identifying recovery or rehabilitation plans that meet their needs and demands
- long COVID assessment sites - looking at:
- progress in development - tailoring them to local need and resources, and meeting multidisciplinary team requirements
- early lessons learnt - for improving service user experience and sharing data records across local health teams to deliver joined-up care
- expansion and reach - ensuring fair distribution of clinics across the country and availability of care
- primary care - supporting the workforce to respond to long COVID cases and feel confident in providing care and referrals, as well as integrated working, and utilising services across primary care
- rehabilitation - priorities for:
- utilising specialist knowledge - and providing effective care, including for those that were hospitalised
- developing plans for outpatients and those not hospitalised - looking at:
- what is required for specialist care as a result of multi-symptom effects from COVID
- the use of innovative technology for remote care support, with the UCL COVID rehabilitation app being rolled out in hospitals, including remote tailored recovery plans for patients
- support more broadly - including helping patients get back to work, and helping employers prepare for disruption as a result of long COVID
- capacity - priorities for tackling increased pressure on the NHS infrastructure, workforce and community health systems, with an estimate of around 1m people who will need rehabilitation from long COVID, including over 100,000 NHS staff
- looking forward - evaluating the ongoing impact of long COVID into the future and how it can be mitigated, and how the work on long COVID fits into the national pandemic response and recovery
Relevant developments:
- COVID-19 rapid guideline: Managing the long-term effects of COVID-19 - from NICE, on:
- confirmed common symptoms, and recommendations on identification, assessment, care, management and monitoring
- establishing long COVID services and future areas for research
- NHS England’s five point plan - including commissioning NICE guidance, the online Your COVID Recovery support platform, development of long COVID clinics with £10m investment, NIHR research, and the establishment of a long COVID taskforce
- long COVID assessment sites - the announcement of more than 80 specialist clinics being set up around the country for patients with long-term symptoms
- research:
- UK research programmes - led by the NIHR and UKRI, including projects involving non-hospitalised patients, to improve understanding and mitigation
- WHO calling for improved research into long COVID - to understand the causes, as well as gain more recognition for long COVID sufferers
- In the wake of the pandemic: preparing for Long COVID - a policy brief for decision-makers published by the European Observatory on Health Systems and Policies
- NIHR Centre for Engagement and Dissemination’s second review of Living with Covid19 - concluding long COVID may be defined as up to four different syndromes, as well as highlighting those most at risk of developing long COVID are women and young people
- PHOSP-COVID study - conducted by NIHR Leicester Biomedical Research Centre, it concluded that 70% of patients who are hospitalised with COVID do not recover in 5 months
- HEAL-COVID clinical trial - looking at existing drugs and their ability to prevent symptoms of long COVID on those who have recently been hospitalised, with the aim of reducing readmissions to hospitals
- NIHR launches second £20 million Long COVID funding call - specifically to improve research into improved diagnostics, as well as finding possible treatments and improved treatment pathways
- parliamentary call for evidence - the All-Party Parliamentary Group on Coronavirus seeking consultation with those who have continuing health problems from COVID, and calling for compensation for long COVID sufferers
- recovery:
- Your COVID Recovery - an online tool to support patients with understanding and managing their COVID recovery process
- The Society for Occupational Health’s COVID-19 Return to Work Guide:
- outlining advice for going back to work after suffering COVID and long COVID
- with guidelines on employer responsibilities and further support
- Living With COVID Recovery programme - a rehabilitation app developed by UCL and partners, which allows remote support for long COVID patients, has been awarded more funding from NIHR to increase the rollout
Policy officials attending:
Our forums are known for attracting strong interest from policymakers and stakeholders. Places were reserved by parliamentary pass-holders from the House of Lords and officials from the Department of Health and Social Care; the Department of Health NI; the Department for Transport; the DWP; the Foreign, Commonwealth and Development Office; the Health and Safety Executive; the Medicines & Healthcare products Regulatory Agency; and the UK Statistics Authority.
Overall, we expected speakers and attendees to be a senior and informed group including Members of both Houses of Parliament, senior government officials in this area of public policy, together with other stakeholders from across the health sector, including industry representatives, primary care and community health specialists, research and development organisations, executive agencies, regulators, the independent and third sector, patient groups, manufacturers, law firms and consultancies, academics and think tanks, and reporters from the national and specialist media.
