We recently raised concerns with two Trusts regarding referral criteria that excluded patients based on BMI. Following our correspondence with Mid and South Essex Community NHS Foundation Trust and Sussex Community NHS Foundation Trust, we are pleased to report that these criteria are now under review.
Both Trusts acknowledged our concerns and confirmed that changes to the referral forms will be considered at the commissioning level, with the ICBs informed. Importantly, they clarified that referrals are not rejected on BMI alone and are assessed individually, with additional clinical information sought where needed.
We welcome the Trust’s commitment to review these criteria and will continue to engage to ensure referral pathways are fair, inclusive, and patient-centred.
However, concerns remain elsewhere. We are aware that multiple patients have been excluded from the North of Tyne ME/CFS service on the basis of BMI, resulting in denied referrals and restricted access to appropriate care. Previous engagement with the service has not resolved this issue. We are now supporting affected patients through further escalation, including engagement with the Patient Advice and Liaison Service (PALS).
Excluding patients from ME/CFS services based on BMI is not supported by NICE guideline NG206 and risks delaying access to appropriate care. Delayed diagnosis and management are associated with poorer long-term outcomes for people with ME/CFS. This also raises wider concerns about whether General Practitioners may be left to assume responsibility for diagnosis and management when patients cannot access specialist services.
Rather than delaying or denying access to specialist care, we advocate the approach outlined in Section 1.12.22 of NG206, which recommends referral to a dietetic assessment with a dietitian with a special interest in ME/CFS when weight is a concern.
If you have been denied access to an ME/CFS service based on BMI, please contact the Healthcare4ME team at health@meassociation.org.uk.