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FMA UK October 09 Newsletter

FMA UK Links With Associated Alliances

The Long-term Conditions Alliance (LTCA) was an alliance of over 100 national voluntary sector organisations representing the interests of people with long-term health conditions. LTCA’s primary role was, on behalf of people with chronic conditions, to influence our society and its public services, and to strengthen member organisations so they can better help their particular communities of interest.

On 17 October 2009, the LTCA and National Voices merged to create one unified umbrella charity representing service users and carers in health and social care policy-making nationwide. FMA UK is a member of LTCA, and trustees attend occasional meetings. One of the meetings that was attended dealt with accessibility training provided by LTCA Scotland, another featured media training provided by Diabetes Scotland. Both of these meetings took place in August.

FMA UK is a member of ARMA (Arthritis and Musculoskeletal Alliance), and trustees regularly attend meetings in London and other UK centres. One such meeting was attended recently in London, which concerned the launch of an audit of musculoskeletal services nationwide.

ARMA Is The Umbrella Body Providing A Collective Voice For The Arthritis And Musculoskeletal Community In The UK. Together, ARMA And Its Member Organisations Work To Improve Quality Of Life For More Than 8.5 Million People In The UK With These Conditions. The Aims Of ARMA Are To:

  • Promote the development of treatment, prevention, rehabilitation and relief
  • Foster co-operation, understanding and mutual support between all individuals and organisations concerned with these conditions
  • Provide a forum for the exchange of ideas and information between member organisations

All Party Parliamentary Group (APPG) / Medical Advisory Board (MAB)
Parliamentary Question

Stephen Hesford, MP for Upton, Wirral submitted the following written question to the Minister for Health:

“To ask the Secretary of State for Health what his Department's policy is on the provision of services for people diagnosed with fibromyalgia; and whether he plans to review that policy.” [286854].

This brought the following response from Ann Keen:

“People living with fibromyalgia have access to the full range of health and social care from the national health service, including access to pain management services. We have no plans to review this policy. We have published an 18-week pathway to support those commissioning pain management services. The pathway is specifically aimed at supporting local implementation of good practice, to improve efficiency, reduce delays, and improve quality of service provision in a safe and effective way.

It is the responsibility of primary care trusts to commission specific services for people with fibromyalgia, taking into account the resources they have available, the needs of their wider population, and available guidance on best practice.”

FMA UK felt that this reply was unsatisfactory, and showed a marked lack of knowledge about FMS. Consequently, FMA UK responded:

“Fibromyalgia Association UK responds to Department of Health statement on MSF Audit:
Ann Keen’s answer to the MP for Wirral West, Stephen Hesford’s question about treatment for fibromyalgia on 13th July 2009 and the audit, Joint Working by Arthritis and Musculoskeletal Alliance (ARMA), of provision under the Musculoskeletal Services Framework(MSF) shows how much is still to be done for the decision makers to understand the problems people with fibromyalgia face. Although people with fibromyalgia have the same level of service as other users there are no recognised guidelines for treating fibromyalgia as a whole leading to each symptom being treated as a separate entity in separate departments.

The MSF was supposed to ensure that Primary Care Trusts (PCTs) had a team approach for people with long term conditions such as fibromyalgia but this has not been implemented in the majority of cases as the ARMA audit has shown.
The very first step asks for PCTs to conduct a needs assessment as Ann Keen has indicated in her answer, so that the level of resources needed can be evaluated. The audit showed that 84% of PCTs had not done this mapping exercise

As usual the patient suffers whilst the PCTs and government fail to act. It has taken an organisation of charities to bring the failure of the MSF to the government’s attention and still this has not been considered in the answer to this question. We feel this standard answer showed no real understanding of the problems faced by people with fibromyalgia despite the evidence that had been presented to Ann Keen at the Westminster Hall Debate recently.

FMA UK had already ensured that Ann Keen received a printed copy of the Joint Working audit. These areas for concern will also be stressed to Anne Keen in our upcoming meeting. We will be following up on this with the help of other interested organisations and through our All Party Parliamentary Group (APPG) so that the problems are made clear.

FMA UK will continue to strive to improve the levels of care for sufferers while increasing understanding of this condition among health professionals and the general public.”

Meeting with Ann Keen
Following the successful Westminster Hall debate, a meeting was arranged between Ann Keen (Health Minister) and FMA UK trustees and MAB. Unfortunately, at the last minute Anne Keene was unable to attend. FMA UK representatives had already travelled to London, and rather than waste the day, a productive meeting was held with MAB members and trustees.



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