Parliamentary Question | support to people newly diagnosed with M.E. | 22 May 2012

May 23, 2012

Kerry McCarthy (Labour MP for Bristol East) tabled a question that asked the Secretary of State for Health what steps he was taking to increase the support available to people recently diagnosed with myalgic encephalomyelitis.

In a written reply supplied on 22 May 2012, Minister for Care Services Paul Burstow answered:

It is for the local national health service to plan and deliver services according to local need. In 2007, the National Institute for Health and Clinical Excellence (NICE) issued a clinical guideline on the management of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). The guideline recommends the use of cognitive behaviour therapy and graded exercise in patients mildly or moderately affected by CFS/ME on the basis that these were the interventions for which there was the clearest research evidence of benefit. A number of other treatments, including particular drugs, vitamin supplements and complementary therapies, were not recommended because there was not enough evidence to suggest that they were effective. The guideline acknowledges that there is no one form of treatment to suit every patient, and that treatment and care should take into account the personal needs and preferences of the patient.

In terms of future provision, the health and social care reforms will support the improvement of outcomes for people living with CFS/ME and other neurological conditions. Improving quality and delivering better health outcomes for patients is the primary purpose of the NHS. Accountability throughout the system needs to be focused on the outcomes of care, rather than the processes. This focus on outcomes will start at a national level with the 2012-13 NHS Outcomes Framework, which defines and will enable measurement of the key outcomes that matter to patients.

All five domains within the NHS Outcomes Framework have relevance for people living with CFS/ME and other neurological conditions. Domain two—enhancing the quality of life for people with long-term conditions as a whole—is the most immediately relevant. This reflects the fact that increasing numbers of people have multiple long-term conditions, and it is not always helpful to see their care from the perspective of a single clinical pathway. Domain two seeks to capture how successfully the NHS is supporting people with long-term conditions to live as normal a life as possible and will be measured using three outcomes:

(i) feeling supported to manage their condition—this measures how well the NHS as a whole is doing in supporting people to look after themselves and handle the consequences of their conditions;

(ii) functional ability—this measures how well the person is able to live as normal a life as possible, and by looking at employment ties in well with the Department for Work and Pensions and the Government's wider policies about getting people, back to work; and

(iii) reduced time spent in hospital—this measures how successfully the NHS manages the condition(s) by looking at unnecessary hospital admissions and excessive length of stay.

It will be the responsibility of the NHS Commissioning Board to determine how to deliver the outcomes in the NHS Outcomes Framework. The board will use the Outcomes Framework and NICE Quality Standards to develop a Commissioning Outcomes Framework and together these will be the basis for clinical commissioning groups to be held to account. The board will also support commissioning by developing detailed commissioning guidance and tools such as standard contracts and tariffs.

Kerry McCarthy also asked the Health Secretary what assessment he had made of recent research into the biological causes of M.E. Mr Burstow replied: “The Department has made no assessment of recent research into the biological causes of chronic fatigue syndrome/myalgic encephalomyelitis.”

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