ME Association submits evidence to Commons Select Committee on Health inquiry into Management of Long-Term Conditions | 9 May 2013

May 9, 2013

The ME Association has sent in a 2500-word submission to this Health Committee Inquiry.

Our submission has been accepted.

Our submission covers a number of areas relating to the management of ME/CFS that need to be addressed.

In particular:

A comprehensive epidemiological study needs to be carried out so that health commissioners have information relating to numbers, age and severity of people with ME/CFS in order to plan NHS services

Medical education on ME/CFS at both an undergraduate and postgraduate level for all health professionals

Early and accurate diagnosis of ME/CFS in primary care – followed by appropriate advice on management

The need for physician-led multidisciplinary hospital-based referral services that are easily available to people with ME/CFS in all parts of the UK

Particular attention to the current lack of services for children and adolescents in many parts of the UK and the almost total absence of hospital-based and domiciliary (home-based) services for the severely affected

A major revision of the NICE guideline on ME/CFS – which currently places far too much emphasis on the use of CBT (cognitive behaviour therapy) and graded exercise therapy (GET)

The MEA will release a copy of our submission when we are allowed to do so by the Health Committee

We have indicated that we are also very happy to give oral evidence to this parliamentary Inquiry

More information on the Parliamentary inquiry

Long-term conditions are defined on the Department of health website as “those conditions that cannot, at present, be cured, but can be controlled by medication and other therapies. The life of a person with a LTC is forever altered – there is no return to ‘normal’.” Among the most common of these conditions are hypertension, asthma, diabetes, coronary heart disease, chronic kidney disease, stroke and transient ischaemic attack, chronic obstructive pulmonary disease, heart failure, severe mental health conditions and epilepsy.

The same source also records that in 2012 the Department of Health was ‘working towards developing a cross-government strategy’ on long-term conditions and sought public views on its content. In the event, the Department did not produce a long-term conditions strategy as the Commissioning Board was to assume this responsibility. It did, however, share the results of its work with the Board.

Treatment and care for people with long-term conditions account for seventy per cent of health and care spending, and over 20 million people in England are living with one or more long-term condition. The management of long-term conditions requires a strong degree of interaction between health, social care and other services and demands the treatment of patients within the community and outside acute hospitals.

The Health Committee has decided it wishes to examine the way in which the NHS and social care system in England supports people with long-term conditions and seeks comments on the following issues in particular:

The scope for varying the current mix of service responsibilities so that more people are treated outside hospital and the consequences of such service re-design for costs and effectiveness

The readiness of local NHS and social care services to treat patients with long-term conditions (including multiple conditions) within the community

The practical assistance offered to commissioners to support the design of services which promote community-based care and provide for the integration of health and social care in the management of long-term conditions

The ability of NHS and social care providers to treat multi-morbidities and the patient as a person rather than focusing on individual conditions

Obesity as a contributory factor to conditions including diabetes, heart failure and coronary heart disease and how it might be addressed

Current examples of effective integration of services across health, social care and other services which treat and manage long-term conditions

The implications of an ageing population for the prevalence and type of long term conditions, together with evidence about the extent to which existing services will have the capacity to meet future demand

The interaction between mental health conditions and long-term physical health conditions

The extent to which patients are being offered personalised services (including evidence of their contribution to better outcomes)

Although the purpose of this inquiry is to examine the effectiveness of service provision for people with any form of long-term condition, the Committee will also wish to review in particular services provided for patients with diabetes. This will inform the Committee’s general review of the subject.

The Committee will also review the definition of long-term conditions to examine how to provide more effective management of interventions necessary to bring about service change.

Health Committee website

1 thought on “ME Association submits evidence to Commons Select Committee on Health inquiry into Management of Long-Term Conditions | 9 May 2013”

  1. CBT and GET should be completely removed from the NICE guidelines. There is no evidence to support their use and the PACE trial clearly showed neither produced any clinically significant benefit at all for even fatigued people.

    The NICE guidelines also breach the WHO classification system as they select people with fatigue syndromes and subsume ME under the CFS/ME name.

    There should have been a review of these guidelines this year, where it would have then become clear to all that there are no treatments offerend to people with ME in the UK. Unfortunately NICE deliberately suspended all guideline reviews for 2 years. Are they waiting for the NHS/Peter White study called GETSET to have results that may fit their ideology?

    Obviously the NICE guidelines should be removed from use and guidelines that separate the neurological disease ME from fatiguing disorders should be produced. One that would not included any mention of CBT or GET, as they are not effective for treating ME.

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