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A national approach to understanding Long COVID

Long COVID or Post-COVID Syndrome are terms that many of us will have heard over the last couple of years. Used to describe symptoms that persist for longer than 12 weeks, following a confirmed or suspected case of COVID-19. Even though someone might have experienced a mild or even asymptomatic response to the virus itself, many people are left with symptoms such as breathlessness, joint pain, fatigue and brain fog, to name a just few. There’s no real consistency to symptoms for all people. It can affect the whole body, and symptoms can change or come and go over time. There is also no single course of treatment that can help symptoms go away.

On the 15th June 2021, the Welsh Minister for Health & Social Services announced the launch of the Adferiad (Recovery) programme, which allocated £5 million (during years 2021/22) to Welsh Health Boards for introducing a new suite of patient pathways combined with new or expanded primary, secondary and community rehabilitation services to support people with Long COVID.

Welsh Government has planned to review the Adferiad (Recovery) programme every 6 months to monitor and assess the efficacy of the new services provided. Therefore, each Health Board in NHS Wales is required to provide information on how they have been locally implementing the programme and whether it is making a difference to people suffering with Long COVID symptoms in Wales.

Following a request from Welsh Government, the Welsh Value in Health Centre and our partners at Cedar, offered to support the Executive Director of Therapies and Health Science in the Health Boards in Wales by facilitating the collection of relevant patient outcome and experience measures (PROMs and PREMs) via an agreed set of surveys. Then taking this collected data and analysing it for reporting at a national level.

The Welsh Value in Health Centre supported the creation of the surveys by licensing, developing, translating and deploying 56 different surveys (eight for each health board, including both Welsh and English language options). Our colleagues in Cedar have facilitated the data collection and have been reporting data back to all Welsh Health Boards on a monthly basis since September 2021.

Cedar have also been analysing all of the data collected on any platforms, and presented their initial findings in mid-January with another report due later this year.  A number of Health Boards have also commissioned Cedar to carry out additional work in the form of patient case studies, and focused reports including economic evaluations and social return on investment analysis.

This work is a great example of how effective collaboration can lead to an efficient and consistent approach, to a particular challenge for all Health Boards across NHS Wales, led by the Directors of Therapies and Health Science, and facilitated by the Welsh Value in Health Centre.

With hundreds of completed surveys already being analysed, this study will provide valuable data to improve our understanding of how Long COVID is really affecting people in Wales. In time, it will also help inform the Executive Directors of Therapies and Health Science on how Health Boards across Wales should plan services that can improve outcomes for these patients in the future.