Issue - meetings

Report of the Head of Democratic Services

The Chair introduced a report of the Head of Democratic Services on the services provided for and issues faced by people with Myalgic Encephalopathy (ME) and related diagnoses, to determine whether further scrutiny is required. The issue had been brought to the Panel’s attention by members of the public, and public concerns had been expressed about gaps in and consistency of service provision.

The Panel received a presentation by Russell Pitchford, Commissioning Manager – Community Services and Integration at NHS Nottingham City Clinical Commissioning Group (CCG), who highlighted the following points:

(a)  ME and related conditions, including Chronic Fatigue Syndrome (CFS), Post-Viral Fatigue Syndrome (PVFS) and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) were prevalent in 0.2 to 0.4% of the population. The National Institute for Clinical Excellence classifies ME/CFS into 3 categories: mild, moderate and severe, but definitive figures for each category are not known;

(b)  It is acknowledged that there is a considerable variation in current practice by service providers;

(c)  Diagnosis is by exclusion of other possible diagnoses, with symptoms persisting for 4 months in adults and 3 months in children and young people, and may present with other conditions, making diagnosis complex;

(d)  It is acknowledged that the conditions have a significant impact on patients and families;

(e)  There is a dedicated Nottinghamshire Adult CFS/ME Clinic based at the City Hospital, providing services to those with mild to moderate diagnoses. The programme offered seeks to sustain and/or extend the person’s physical, emotional and cognitive capacity, to manage the physical and emotional impact of their symptoms and to provide cognitive behaviour therapy and/or graded exercise therapy;

(f)  The nearest facility for treating severe ME is in Leeds, but there are no current patients from Nottingham referred to the facility;

(g)  Services should be needs-based and delivered under local integrated services, with support from specialist services;

(h)  The CCG has identified training and education and continuity of care and access to services as the key development areas going forward. The CCG will look to offer education and awareness raising among non-specialists on the symptoms, diagnosis and management of the ME, will look to make local clinicians aware of the specialist services available, and seek to ensure that specialist services consider providing education and awareness training to non-health professionals;

(i)  The CCG will also establish agreed pathways to ensure timely diagnosis, consider local referral protocols so people are treated in the right setting, include guidance in protocols so that care is consistent across services.

The Chair then invited Jenny Billings of the ME Self Help Nottingham Group (MESH) to address the Panel, who made a number of points, summarised below:

(j)  sufferers of ME/CSF in Nottingham City have experienced delays in diagnosis, have been misdiagnosed and have not been taken seriously by GPs when presenting with ME/CSF symptoms. Sufferers of Fibromyalgia have had similar experiences;

(k)  there is a need for a training refresh for GPs in Nottingham to address attitudes to ME/CSF, and to ensure consistency of diagnosis  ...  view the full minutes text for item 53