On 10th February, the HASC team met with our working group of Buckinghamshire, Oxfordshire, and Berkshire West Integrated Care Board (BOB ICB) residents, who we hope to work with regularly throughout the pilot project. The discussion highlighted key issues surrounding social care services for those with ME, including a lack of coordinated care across the health and social care sectors, transport barriers, potential harms that can arise when delivering social care, and challenges in securing appropriate financial aid following the loss of employment due to the impact of the illness.
The next meeting will be held on 27th February, 1:30 p.m. to 2:30 p.m. The focus will be on discussing views on integrated ME/CFS and Long COVID Specialist NHS services and an ideal patient pathway.
Patients and carers with experience of ME/CFS and Long Covid services in the BOB ICB area can register to join future working group meetings by completing our working group survey: