Agenda item

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 and treatment. In particular, there has been inconsistency in carrying out blood tests and in referring patients to specialists to rule out other illnesses at an early stage;

(l)  it is regrettable that Nottingham City CCG did not circulate to GPs for information a report produced by Carruthers and Van de Sande on ME/CSF, as it purportedly failed to meet NICE Guidelines. This was at odds with NHS Services elsewhere in England, which have based information given to patients on this report;

(m)  it is unacceptable that the nearest service for those with severe ME/CSF is in Leeds, while patients with moderate ME/CSF find it difficult to access the service at the City Hospital because of its remote location;

(n)  MESH Nottingham has experienced poor levels of communication and consultation with Nottingham City CCG, particularly about progression and outcomes of a personalised health budget pilot, and proposed service provision for those with severe ME/CSF. Better working relations between MESH Nottingham and Nottingham City CCG are needed to achieve better outcomes for Nottingham citizens;

(o)  It is unacceptable to have local diagnosis figures based on national percentages rather than on local NHS medical records, and this is down to a failure to diagnose and refer appropriately;

(p)  There is a sense that there has been little positive action to improve the situation for patients ‘on the ground’. Without the CCG being held to account through a timetable for action this situation is likely to continue, and MESH Nottingham wanted the Panel’s help in continuing to monitor the service provided to ME/CSF sufferers in Nottingham;

(q)  A service user endorsed Ms Billings’ comments about diagnosis difficulties, and advised that a majority of survivors of child sexual exploitation suffered from CFS;

(r)  In response to points (j) to (p) above, Mr Pitchford advised that patient feedback for the ME/CSF clinic for mild to moderate sufferers was very positive. He acknowledged that there were gaps in provision for those with severe ME/CSF, but that commissioning a service was difficult given low numbers, and options for a joint Nottingham/Derby service were being explored.

Dr Manik Arora of Nottingham City CCG provided a GP/clinician perspective, making the following points:

(s)  GPs need to diagnose by exclusion and, while frustrating for both patients and clinicians, taking time to eliminate non-ME/CSF conditions such as anaemia and Multiple Sclerosis is vital if very serious alternative conditions are to be identified and treated. An added complication was that diagnosing other conditions did not mean that ME/CSF was not also present;

(t)  Clinicians are happy to take on board learning but are also frustrated by the conflicting guidance, advice and evidence available;

(u)  Accurately recording numbers is challenging and this makes the task of commissioning a service very difficult. Addressing the lack of information through the Joint Strategic Needs Assessment (JSNA) would be helpful;

(v)  Fragmented commissioning is an issue, but can only be improved through all stakeholders working together non-confrontationally. Ultimately, clinicians want to address patient needs.

Ruth Rigby, Managing Director, Healthwatch Nottingham, appealed to all stakeholders, but especially to patients groups, to share information with Healthwatch. This will build an evidence base to help inform the JSNA and commissioning decisions going forward. As an independent body, Healthwatch Nottingham is in a position to help facilitate information-sharing among stakeholders.

RESOLVED to note the presentations and very valuable, open discussion and to endorse Healthwatch Nottingham’s offer to facilitate information gathering and exchange.