The NHS specialist service for ME/CFS in Cambridgeshire and Peterborough is striving to be fully compliant with the 2021 NICE Guideline and is seeking greater medical involvement for to help with assessment and diagnosis.
The Cambridge ME Support Group, CBME, are independent volunteers who are making their mark. Under the stewardship of Mark Harper, the group has grown to over 160 members and now has a working relationship with the Cambridgeshire and Peterborough specialist service.
Mark recently reported that “we had a successful meeting with the Cambridgeshire and Peterborough ME/CFS specialist service. They have won agreement in principle from the health authority to appoint a GP with special interest to oversee the assessment and diagnosis of people who might have ME/CFS. The post will only be for a few hours a month, but it could mean that the ME/CFS service gains a higher profile in Cambridgeshire and Peterborough.”
What is the role of a GP with Special Interest?
Dr Vikki McKeever, GP with a special interest in ME/CFS for Leeds and West Yorkshire ME/CFS service and The Yorkshire Fatigue Clinic explains that the role involves:
- dealing with service referral queries and guidance requests from GPs,
- seeing patients for detailed diagnostic assessments and for medical review, and
- providing medical support to the therapy teams.
Dr Mckeever does not prescribe medications or order investigations but she “often provides guidance to GPs to let them know what investigations are needed or to make suggestions for other management strategies.
“Most of the patients referred to my services will not meet directly with a doctor as the therapists are highly trained in conducting the clinical assessments required.”
When complex medical problems or atypical symptoms are a factor, a diagnostic assessment by the GP with Special Interest can assess whether a diagnosis of ME/CFS is appropriate. Other causes or contributing factors to symptoms and to functional impairment can also be identified.
In 2018 the British Association of Clinicians in ME/CFS (BACME) gathered data from 42 NHS specialist ME/CFS services, finding 38% of ME/CFS services had no medical input. The doctors working in specialist services came from 11 different medical specialities, with GPs with a Specialist Interest being the largest single speciality represented and were working in 6 different specialist services. BACME are undertaking an updated survey in 2023.
The power of working together
Patience is required when it comes to NHS services for ME/CFS, but constructive dialogue between local support groups and NHS representatives can pay dividends over time.
Cambridgeshire and Peterborough may be on the verge of an important milestone and let’s hope the conversations between the local people with ME/CFS and NHS clinicians continue to be fruitful.
The views of the ME/CFS community are invaluable in shaping NHS plans in each local area and the ME Association is delighted to see patient engagement increasing in some parts of the UK, notably in Greater Manchester and Sheffield most recently.
Local advocacy efforts by those living ME/CFS are inspirational and the patient voice can be a powerful tool when engaging with the NHS. The energy commitment is not for everyone, but we are grateful for those who embrace the challenge.
ME Local Network
Cambridgeshire’s CBME is a proud member of ME Local Network (MELN). The MELN was set up in 2021 to bring together M.E. friendship and local support groups from across the UK.
MELN meetings are primarily attended by leaders of support groups and, together with other important work, they share their experiences of interactions with the NHS.
Juan Corlett, as Engagement Lead for Community Support and Integrated Care. Juan has been attending MELN meetings since last year and speaks highly of this network of local ME/CFS advocates.
Juan was instrumental in working with local residents, the Isle of Man government, and UK and Island healthcare professionals to create a new ME/CFS and Long Covid Specialist Service.
“The collective enthusiasm is clear and it's exciting to be working with knowledgeable ME/CFS community representatives who share the same goals and learn from each other’s experiences.
“I first met Mark Harper last year and was immediately impressed! Mark’s a dynamic driving force for the Cambridge ME Support Group and MELN, while carefully managing his own energy levels.
“Local support groups are getting their foot in the door with NHS representatives. I’m optimistic about where this will lead and the ME Association will continue to support these efforts.
“We are all very keen to see the NICE Guideline’s recommendations implemented effectively across the UK and hope that Cambridgeshire and Peterborough’s service achieves full compliance and find the additional staff they need.
Mark “looks forward to working with the specialist service to strengthen and extend support for people living with ME/CFS in the CPICB area.”
- Website for Cambridge ME Support Group: cambridgeme.org.uk
- Facebook for CMBE: www.facebook.com/CBMEgroup
- Cambridge and Peterborough NHS ME/CFS specialist service. www.cpft.nhs.uk/service-detail/service/myalgic-encephalomyelitis-me-chronic-fatigue-syndrome-cfs-70/
- ME Association Local support group directory: meassociation.org.uk/local-support-groups
- ME Association Local Area Initiative: meassociation.org.uk/2023/04/healthcare-improvements-isle-of-man-launch-new-me-cfs-long-covid-specialist-service
- If you are interested in volunteering to help improve NHS specialist services in your area, please email: email@example.com