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FMA UK October 09 Newsletter

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Category: Newsletters

Published on Wednesday, 28 October 2009 08:25

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The Board of Trustees of Fibromyalgia Association UK have recognised the need to keep Regional Coordinators and members of local support groups updated with information about the work that they are undertaking on behalf of people with fibromyalgia and their carers.

This will take the form of a Newsletter which will be published twice a year and circulated to all local groups via their own Regional Coordinators. Below is an outline of what has been happening since the Group Leaders’ Meeting in May, 2009.

Board Of Trustees

Currently there are 5 trustees:

• Pam Stewart MBE Chair
• Des Quinn Vice Chair and Webmaster
• Janet Horton Benefits Helpline
• Roger Leadbeater Treasurer
• Gerry Crossley National Helpline coordinator

Unfortunately, Betty Farron resigned in August due to ill health. Betty worked tirelessly at her role of funding and fund-raising, and we shall miss her input tremendously. The trustees thank her for all her hard work.

Fibromyalgia Media Coverage

BBC 1 Panorama Programme
FMA UK and many FM sufferers were incensed when Panorama (The Trauma Industry – 27th.July), used a fibromyalgia patient to illustrate benefit fraud, saying “…and like other new psychological disorders (Chronic Pain Syndrome, Somatoform Disorder, Fibromyalgia,) it’s almost impossible to disprove". The patient in question fraudulently claimed £8,000 in benefits. FMA UK penned a strong criticism to the BBC, who acknowledged their error and posted an apology on their website, but the programme was not edited in the BBC i-player, and no apology was broadcast. The statement from the BBC said:

“In response to representations made by FMA UK, FibroAction and numerous fibromyalgia sufferers the BBC propose to add a comment to the programme and on BBC I-player as follows:

Two organisations representing sufferers of fibromyalgia syndrome have objected to how it was represented in Monday's programme, The Trauma Industry.

The film referred to it simply as a psychological condition, which is inaccurate. While some in the legal profession regard it as a controversial diagnosis and it is listed under psychiatric disorders in the Judicial Studies Board Guidelines, the NHS terms it a physical condition which causes pain to sufferers.

Fibroaction and FMA UK say the syndrome should be termed a neurological-related condition or a "condition, with an increasing body of evidence to show that it is a Central Nervous System related disorder".

The programme questioned whether sufferers of Post Traumatic Stress Disorder (PTSD) and other conditions that are difficult to test for should sue for compensation and included an example of a fraudulent claim by someone claiming to have fibromyalgia syndrome.

However, it was not the programme makers intention to imply that sufferers of any such condition are not genuine and apologise if any distress was caused to anyone in pain. "

Daily Mail Article
FMA UK were contacted by the Daily Mail, asking if we could suggest a doctor they could interview for an article on fibromyalgia. We suggested they contact Dr. Tom Gilhoully. The article turned out to be a full page interview with Maria Roberts.

FMA UK Publications

Children's booklet
The Children’s information booklet has been a long term project, involving Kathy Longley and all the trustees, which has finally reached a conclusion. This is a booklet written for young persons with fibromyalgia, with a pullout section for parents and pages for teaching staff, and we think it will be popular and useful to young sufferers. The Office now has a stock of these and they will be distributed free of charge on request.

Medical Booklet for Medical Professionals
The Medical Booklet has been revised by the Medical Advisory Board, in consultation with the trustees, and is now almost ready to go to the printers. This booklet is distributed free, directly to medical practitioners on request. People with fibromyalgia can contact FMA UK office and request that a copy is sent to their own medical care team by supplying the name of the medical professional and their surgery details.

FMA UK Links With Associated Alliances

LTCA
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.

ARMA
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].

Response:
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.

CPWG on Chronic Pain at the Scottish Parliament
There was also a representative at the Scottish Parliament in September at the AGM of the Cross Party Working Group on Chronic Pain. This provided an update on the Pain Champion Dr Pete Marshall’s progress. He spoke about the work being done in creating a Managed Clinical Network (MCN) for Chronic Pain. This MCN would allow a network of specialists in different fields to work together to help benefit patients.

Benefits Action – The Green Paper
The Green Paper on Shaping the Future of Care Together has caused great concern amongst fibromyalgia patients. The Green Paper proposes that some disability benefits may be abolished (possibly including Attendance Allowance & DLA), and the money handed over to local authorities, who will then provide the care they deem necessary. FMA UK strongly objects to these proposals, and is encouraging all interested parties to protest.

One way to do this is to join the Benefits and Work campaign by completing the petition on their website: http://bit.ly/4NIvv . Another method is to encourage your members to write to their MP. It is important to do this before the end of October. You can also sign the petition on the number 10 website which can be found here: http://bit.ly/2bTC9o

Although government minister Phil Hope has said recently that “DLA is not under threat”, the update at the benefits and works website still urges action as there are still some conflicting messages. You can find out more information from Benefits and Works on the latest changes here: http://bit.ly/eqZGB

The European Network of Fibromyalgia Associations (ENFA)
The European Network of Fibromyalgia Associations now represents eleven European countries and FMA UK is an active participant in their meetings and events. Previously, meetings have been held in various European cities, but, to cut down on the expense, regular Skype (internet telephone) conferences are held. Pam Stewart is our representative at these meetings.

Trustee Meetings
In order to cut down on expenses the members of the board regularly keep in contact with one another via monthly Skype conference calls. This allows important business to be discussed between face to face trustee meetings. Trustee meetings are held in Stourbridge 3 times a year.

Office
The Stourbridge office continues to be staffed 5 mornings a week by Chloe, helped out on many days by volunteer Laura. In the last 18 months the office has sent out over 4000 posters and nearly 15,000 awareness flyers. In August 418 individual information booklets were also sent out. The office can be contacted for merchandise orders or admin enquiries on 01384 895002 or This email address is being protected from spambots. You need JavaScript enabled to view it..

Website
With the growth of the website it is being redesigned by Des to provide better organisation to the growing content that we feature, but this is progressing slowly due to pressure of work. The new design will improve functionality for the website as well as making it more accessible and we hope to launch it soon

Conclusion
FMA UK Board of Trustees would like to take this opportunity to thank all of those who work tirelessly to support the Association in their work to raise awareness of the condition with members of parliament, medical professionals, the general public and to provide support for people with fibromyalgia and their families. Without your input the association would not be able to provide the level of service that it does.

We hope that you will find this information informative and we look forward to hearing from you with any feedback and about what you have been involved with in your own catchment area.