Lucy led a meeting with an NHS Trust on Wednesday. Two clinical leads who work for an Long Covid service and a community-based ME/CFS service attended along with Russell from the ME Association. Both services have worked closely together since the aftermath of the pandemic as they realised their combined skills were needed for the best care of ME/CFS and LC patients.
Their ICB is now looking into combining ME/CFS and LC services across several counties and have looked to the ME Association for guidance. They currently provide care for Severe/Very Severe ME/CFS and will continue to do so.
They expressed a wish for more ‘Recovery Role Models' (used to be called Expert Patients) to help with clinical support. They will continue to use Patient Informed Follow-Up (PIFU), whereby patients can self-refer back into the service if they are not managing well.
They also include a breathlessness service.
The MEA health and social care team will continue to work closely with this service and the reviewing body over the coming months.Â