As I posted yesterday, I'm going to post the commitments looked for by the AfME 2010 Manifesto in full. You'll find the first one below - I've tried to add some useful links to give it context.
1: Health
Put an end to inequalities in health provision faced by adults, young people and children with M.E.
Key facts:
On 6 May 2009, Lord Darzi told the House of Lords: “It is the responsibility of Strategic Health Authorities to ensure that services are available – and sufficiently funded and staffed with appropriately trained staff – to meet the health and social care needs of those of their local population diagnosed with CFS/M.E.”
On 2 December 2009 the All Party Parliamentary Group on M.E. presented its Inquiry report on NHS services for M.E. to the Minister of State for Health Services. The report described
evidence of gross discrepancies in the quality of care provided by Primary Care Trusts for patients with M.E. and found the variations in availability and access to services unacceptable.
Only 2% of respondents to Action for M.E. and AYME’s most recent health survey felt their GP was well informed about M.E.
NICE published its guideline on the diagnosis and management of CFS/M.E. in 2007. Concerns have been raised that recommended treatments such as graded exercise therapy (GET) have harmed many patients.
Our expectations:
M.E. will be included in all pre- and post-registration training of healthcare professionals.
Increased funding to primary care trusts, ring-fenced to enable access to specialist services for all patients, including domiciliary visits for the severely affected.
The review of the National Institute for Health and Clinical Excellence (NICE) guidance on chronic fatigue syndrome/ myalgic encephalomyelitis will be properly informed by patient reported outcomes and the widest possible medical consultation.
Every GP will be enabled to make a timely diagnosis and refer to an appropriate specialist, provide treatment and management advice tailored to the specific symptoms the person has, and a long-term condition care plan.
The role of alternative therapies that patients have reported as helpful in alleviating the symptoms of M.E. will be incorporated into the NHS.
Care of patients with ME will be included in the Quality and Outcomes Framework for General Practice.
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