Manx Care held two listening events in February 2022 on the subjects of Myalgia Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) and Long Covid, with a view to creating ME/CFS and Long Covid services within Manx Care. These sessions were well attended with over 30 people attending the Long Covid event; with over 25 attending the ME/CFS event.
Both Listening Events provided Manx Care with lots of invaluable, essential information on lived experiences, which will guide the developments of the service. Feedback on the sessions from those attending has been largely positive and constructive.
The next two sessions are due to be held at the end of March. These sessions are the same structure as the sessions held in February but are not follow-on sessions. Please register your interest in attending these next Listening Events.
These sessions will serve as a basis for developing a shared understanding of what is required from such a service.
Health and Social Care Minister, Lawrie Hooper MHK has acknowledged the need to improve what is offered to individuals living with either of the long-term health conditions. He has also stated that both conditions are similar but different which is why the listening events are being held separately and are valuable information gathering opportunities for Manx Care.
Manx Care aims to create a space where it can learn from people who live with these conditions, understanding what has helped or hindered them in the past. These lived experiences will guide and shape the developments of the service, helping Manx Care to consider what needs to be made available across the community to help people live well with such conditions.
These events will be facilitated by an independent, impartial member of the Isle of Man Government Learning & Development (LEAD) Team, with Manx Care clinicians (who are already involved with treating people with ME, CFS or Long Covid) in attendance to listen and help on the day.
The next two listening events will be held on Tuesday 29 March 2022 between 1pm-3pm on the subject of Long Covid with the second on ME/CFS between 4pm-6pm on Wednesday 30 March 2022. Both workshops will be held at the Comis Hotel, Mount Murray Road, Santon. The events are being held in the Niarbyl Suite, which is the room on the left as you enter the hotel and has step free access.
Manx Care are requesting anyone with these conditions or caring for someone with these conditions register their interest via Sarah Morton at sarah.morton@gov.im. There is also the option of attending the Listening Events via Zoom if this is preferable; the link to the Zoom call and further information on what to expect at these sessions will be provided when you register your interest in attending.
Those living with ME/CFS or Long Covid are encouraged to complete this questionnaire prior to the sessions taking place, to ensure the voices of those with experience of these conditions are heard.
Manx Care are also welcoming individuals to present their experiences in writing if they prefer; anyone interested in doing so can email sarah.morton@gov.im to have their views/opinions listened to. They would also like to thank those individuals who have already fed back. An update on the outcome of these will be published in due course.
