WINNER - Long Covid Lived Experience Partnership Group

Betsi Cadwaladr University Health Board

Betsi Cadwaladr University Health Board wanted to establish a Long-COVID Recovery Programme in response to people who are experiencing Long-COVID symptoms. The vision was to provide the required levels of care and support for patients and staff to address the longer-term effects of COVID-19, working in collaboration with regional partners and patients.

Long-COVID patients have been working with clinical staff to co-produce the new clinical pathway resulting in the first EPP Self-Management Programme in the UK specifically tailored to patients suffering with Long-COVID. The course helps empower patients to manage their long-term health conditions.

From the outset, a strong principal of co-design was adopted, working closely with patients and clinical practitioners to design a pathway that meets the needs and expectations of people experiencing Long-COVID. The process had to continually adapt to the groups’ health needs to ensure their active participation - for example: meeting virtually, having shorter meetings, sending information in advance and making sure they are not overloaded.

Patients have influenced the development of a Long-COVID clinical pathway, resulting in the inclusion of mental health support services as part of the service offer. The recommendation to include a self-referral process as well as a GP referral process has proved to be very successful with 78% of referrals being self-referral.

Feedback for the course has been positive - one patient wrote to their GP stressing they would recommend this approach for all patients suffering from Long-COVID “it has helped me no end and I now feel far better equipped to continue my journey to a full recovery.”

Additionally, some patients who attended the course expressed an interest in becoming Long-COVID Lived Experience Representatives to ensure the voice of the patient is heard throughout the continued development of this service.

Rachel Wright

rachel.wright@wales.nhs.uk