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MAB Winter 2004 Update
By Kathy Longley MAB Co-ordinator
I am pleased to announce that the FMA UK medical pack, entitled 'Guidance on the Management of Fibromyalgia for the Multidisciplinary Team', is now complete and 500 copies have been printed, free of charge, by my uncle Mr Tony Beck. I would like to thank all members of the MAB for their help and advice on this project. You can view the pack in .pdf format by following the 'Doctors' Medical Pack' link. The medical pack is available to medical professionals only, who can order a copy via the website or from our office (see the 'Contact Us' page for details)
The GP leaflet is currently being distributed throughout the UK under the management of Trustee, Jean Turner. 129 of the 300 Primary Care Trusts in England have requested leaflets to distribute to GPs in their area and reminders have been sent out again to the remaining 171. So far, 17,167 leaflets have gone out, 4000 of those circulated in Scotland, with the postage costing FMA UK about £600. (Wales is next on the hit list.)
MAB Summer 2004 Update
By Kathy Longley MAB Co-ordinator
1. Pregnancy Leaflet
I would like to thank everybody who has completed the pregnancy questionnaire. The responses were interesting and thought provoking and have provided a good basis on which to produce an informative and helpful leaflet on pregnancy and fibromyalgia. I would also like to thank those who have offered to be contacted by other expectant mothers with fibromyalgia who have fears about their pregnancy or ways of coping when the baby arrives. This service will be invaluable.
2. Medical Pack
The medical pack is undergoing a final draft before being approved. Progress has been slower than I anticipated due to the obvious work commitments of the board members and also the limited funding available to produce this pack. I appreciate that the speed of progress is frustrating; I also find it frustratingly slow!
3. GP Leaflet
Distribution of the GP leaflets is now underway by way of individual Primary Care Trusts (PCTs). Trustee, Jean Turner, is contacting Strategic Health Authorities to ask if the PCTs in their area are prepared to distribute the leaflet to all GPs in their region. So far we have received very positive responses. Again, this project has been delayed by a lack of funding. It would have cost £7,000 to distribute the flyer via a third party company to all GPs nationwide. Placing this amount of money into one project would leave very little available for any other projects during the coming year and would leave the Association struggling to cover core costs. Therefore, it seemed appropriate to contact SHAs and PCTs.
4. Updating FMA UK's coloured leaflets on fibromyalgia
We are also in the process of updating these leaflets. At present, Dr Moira Henderson of the Department for Work and Pensions has updated the leaflet on ‘Fibromyalgia and Benefits’. This new edition, with signed approval from the Department of Work and Pensions, will be available when the next batch of FMA UK leaflets is reprinted.
If your group would like to hold fund raising events to support a specific medical board project for example, printing of the pregnancy leaflet or distribution of the medical pack, please send funds to Fundraising Trustee Jean Turner. Thank you.
Please note that the MAB was established to advise the All Parliamentary Group on Fibromyalgia and is unable to respond to individual queries on symptoms or treatments for fibromyalgia. It is impossible to give useful responses without knowing all the facts of a person’s medical records. If, however, you wish to bring research items to the notice of the MAB, please forward them to Kathy at her contact form
See also Kathy's informative articles.
MAB SUMMER 2003 REPORT
By Kathy Longley MAB Co-ordinator
I am delighted to announce that we have two new members on our medical advisory board. Phillipa Newton Cross, a senior physiotherapist, and Anne Johnson, acting head of occupational therapy, are both based at the Royal National Hospital for Rheumatic Diseases in Bath. They have a passionate interest in fibromyalgia and have been intimately involved in successfully producing a fibromyalgia outpatient programme. Kathy is meeting with Phillipa and Anne on a regular basis to discuss the treatment of fibromyalgia at the hospital and to join a fibromyalgia research discussion group. They will both be great assets to our team.
The members of the MAB met together in Bath on July 14th. Here it is an update on the current projects.
1. GP Leaflet
We have to date received a 30% response to the pilot study involving 100 GPs in the Reading area. The results are very encouraging with 99% considering the leaflet to be user-friendly, informative and recommendable to a colleague. The choice of diagrams has been complemented along with comments such as "an excellent leaflet" and "a very useful document" included in the comments section. One surprising response was that 98 % did not feel that an MP's letter of recommendation would encourage them to read the leaflet or add anything to its prestige. The GPs suggested that an accompanying letter from a rheumatologist or a GP with specialist interest in fibromyalgia would be more appropriate.
We have to date received a 30% response to the pilot study involving 100 GPs in the Reading area. The results are very encouraging with 99% considering the leaflet to be user-friendly, informative and recommendable to a colleague. The choice of diagrams has been complemented along with comments such as "an excellent leaflet" and "a very useful document" included in the comments section. One surprising response was that 98 % did not feel that an MP's letter of recommendation would encourage them to read the leaflet or add anything to its prestige. The GPs suggested that an accompanying letter from a rheumatologist or a GP with specialist interest in fibromyalgia would be more appropriate.
Kathy has received a positive response from Professor Donaldson of the Department of Health, who has offered to place a short article drawing attention to the upcoming distribution of the leaflet in the Chief Medical Officer’s update report, which is distributed to 127,000 medical professionals. The MAB have submitted an article of 150 words as requested to be published on 29th August.
Once distribution is complete the GP leaflet will be available on the FMA UK website for all medical professionals to access and will also be included as a “pull-out” in FaMily magazine.
2. Medical pack
The production of the new medical pack is now well underway. Kathy has produced the primary version based on information available from research and review papers. The MAB members agree that this is an excellent basis to build on and are in the process of submitting their comments to Kathy of improvements and possible additions. It has been decided to include an additional four pages of A5 to cover topics such as nursing, alternative therapies, fibromyalgia and pregnancy and cognitive behavioural therapy. The pack will be available towards the end of this year.
The production of the new medical pack is now well underway. Kathy has produced the primary version based on information available from research and review papers. The MAB members agree that this is an excellent basis to build on and are in the process of submitting their comments to Kathy of improvements and possible additions. It has been decided to include an additional four pages of A5 to cover topics such as nursing, alternative therapies, fibromyalgia and pregnancy and cognitive behavioural therapy. The pack will be available towards the end of this year.
3. Information leaflet on Fibromyalgia & Pregnancy
The National Helpline is receiving increasing enquiries about fibromyalgia and pregnancy from prospective mums. In response to this the MAB will be producing an information leaflet including a summary of research findings, practical advice, resources and contacts, along with comments and suggestions from women who have experienced pregnancy and caring for young children while having fibromyalgia.
The National Helpline is receiving increasing enquiries about fibromyalgia and pregnancy from prospective mums. In response to this the MAB will be producing an information leaflet including a summary of research findings, practical advice, resources and contacts, along with comments and suggestions from women who have experienced pregnancy and caring for young children while having fibromyalgia.
4. Investigating research in the UK
Kathy is in the process of compiling a table of the research carried out within the UK on fibromyalgia. This will provide us with information on the type of research carried out in this country along with medical practitioners with a specialist interest in fibromyalgia. It can also be employed in promoting useful links between different research centres.
Kathy is in the process of compiling a table of the research carried out within the UK on fibromyalgia. This will provide us with information on the type of research carried out in this country along with medical practitioners with a specialist interest in fibromyalgia. It can also be employed in promoting useful links between different research centres.
The next MAB meeting will take place on 13th November in London, in conjunction with the APPG meeting at Portcullis House, Westminster.
MAB WINTER 2002/3 REPORT
By Kathy Longley MAB Co-ordinator
Members of the MAB met in Stourbridge on 1st February to discuss current projects and to put forward aims and objectives for 2003.
Update on current projects underway:
- GP Flyer
The final proof of the GP flyer has now been finalised and we are into the printing and distribution process. It has been decided to begin with a pilot study, sending out the flyer to about 100 GPs in one area to gauge their reaction and to collect valuable feedback. The results from this pilot study may initiate further changes to ensure that the flyer is well received and has the impact we all desire. It is important to get this right. In the meantime, Kathy is in the process of approaching Professor Donaldson of the Department of Health to ask for a letter to accompany the flyer. Also, Martin Westby is compiling an A4 sheet to advertise FaMily magazine to ensure that doctors are aware of the further information provided by our magazine.
Medical pack
The MAB have decided to design a new, glossy medical pack from scratch rather than to reorganise the pack currently available from FMA UK. The aim is to produce an A5 size Superflyer of about eight pages, which would be small and concise, ideal for busy medics. The content will be focused towards all health professionals including physiotherapists, occupational therapists, consultants and psychologists. It will provide up to date information on current thinking and provide a useful manual for the multi-disciplinary team approach often used to treat fibromyalgia. Kathy is to put together a primary version based on information available from research and review papers. Then UK specialists from each area will be asked to review the relevant sections.
The MAB have decided to design a new, glossy medical pack from scratch rather than to reorganise the pack currently available from FMA UK. The aim is to produce an A5 size Superflyer of about eight pages, which would be small and concise, ideal for busy medics. The content will be focused towards all health professionals including physiotherapists, occupational therapists, consultants and psychologists. It will provide up to date information on current thinking and provide a useful manual for the multi-disciplinary team approach often used to treat fibromyalgia. Kathy is to put together a primary version based on information available from research and review papers. Then UK specialists from each area will be asked to review the relevant sections.
As this project is likely to take at least six months an alternative medical pack has been suggested to the Trustees for current distribution. This pack will include the Copenhagen declaration consensus document on fibromyalgia, paragraphs on up to date research by Dr Russell, Dr Bennett and Dr Lawson taken from the "Medical Review" of the UK FM conference, the GP flyer and a covering letter giving information on FMA UK and their website. The Trustees can keep a tally of requests for medical packs, so that these contacts can be updated when the new medical pack is completed.
Aims and objectives for 2003
- To distribute the GP flyer to GPs nation-wide accompanied by a parliamentary letter of recommendation.
- To produce a concise medical pack with appropriate information for a multi-disciplinary team of health professionals.
- To investigate funding for new research projects into FM in the UK.
- To expand the MAB by inviting other professionals dedicated to FM to join us.
- To get specialists on fibromyalgia included at important Rheumatology and Chronic Pain conferences in the UK to raise awareness and understanding of FM in the medical community.
- To hold quarterly MAB meetings, co-ordinated with APPG meetings whenever possible to increase MAB attendance at APPG events.
- To continue to meet with the Department of Work & Pensions. The next meeting is scheduled for late May.
MAB AUTUMN 2002 REPORT
By Kathy Longley MAB Co-ordinator
The Medical Advisory Board (MAB) works with the Fibromyalgia All Party Parliamentary Group (FAPPG) to raise awareness in the medical community, advise on medical issues arising and aims to influence the direction of medical research into fibromyalgia in the UK.
The following members are actively involved and dedicated to raising the profile of fibromyalgia within the medical community.
Current List of Members as at 12/01/03
Dr Alan Edwards MA, MB, BChir, MRCGP, Dip Pharm Med. | Allergy Specialist. Alan is linked with the Reading Support Group. He is compiling the results of a survey undertaken by the Reading Group. |
Mr Marcus Vaz Bsc(Hons)Ost. | Osteopath. Marcus is also linked with the Reading Support Group. He treats patients with FM and is at present using a new laser treatment. |
Dr Robert Bennett MD, FRCP | Professor of Medicine at Oregon Health Sciences University in Portland, USA. Dr Bennett is the leading researcher into fibromyalgia in the States. |
Dr Moira Henderson MBBS, DDAM, FFOM | Medical Adviser for the Department for Work and Pensions with an active interest in FM. |
Mr Norman Farron FIBMS | Biomedical Scientist linked to the Bristol Support Group in Portishead. |
Dr Kim Lawson BTech(Hons), PhD | Senior Lecturer in Pharmacology at Sheffield Hallam University and the UK representative of PARAPH, the fibromyalgia organisation based in France |
Kathy Longley BSc | Graduate in Molecular & Cellular Biology. Kathy co-ordinates the MAB, runs the Bath Support Group and writes articles for FaMily Magazine and other journals and publications. |
Current projects
- Distribution of an information flyer to GPs nationwide.
This project is nearing completion and plans to reach its targets early in the New Year. The aim of the flyer, entitled "What You Should Know About Fibromyalgia", is to raise awareness of fibromyalgia within the GP community. It will explain the main symptoms of fibromyalgia; how to diagnose the condition successfully and explain currently available medication. - Revision of the Medical Information Pack for GPs and consultants which is available from FMAUK.
- Responding to current research studies reported in mainstream journals such as the Lancet and the British Medical Journal (BMJ).
- The recent response to the study on fibromyalgia and exercise reported in the BMJ is included on our articles page and can be viewed in the October edition of FaMily Magazine or on the BMJ website. Responses to such articles by the MAB are important to give FMAUK a voice in the research community and to draw attention to possible anomalies in the results and conclusions from such studies, which could lead to unhelpful beliefs in and recommendations by the medical community. For example, "individuals with fibromyalgia simply need to exercise more."
- Meeting with Professor Mansell Aylward and the Department of Work and Pensions on 26th November to discuss ways forward to improve the services provided by the benefits system to individuals with fibromyalgia.
This is encouraging news. The MAB is working hard in these areas to raise the profile of fibromyalgia, however, due to the nature of how the medical community and government operates, progress can appear frustratingly slow. Patience and persistence are required and we need to recognise and applaud each small step we make. I will keep you all updated on our progress with regular quarterly reports.
Kathy Longley BSc
(MAB co-ordinator)
Highlights
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Our professionally printed Information pack on fibromyalgia can be found here to view. You will also receive a free copy on request. We also have a booklet for young people with fibromyalgia that you can obtain on request and will be on the website soon.
FMA UK has recently changed some of its telephone numbers for helplines and groups. Please check here for more information on the New Contact Numbers if required.
FMA UK offers a range of support and information including:
- National Helpline 0300 999 3333 (10am - 4pm Mon - Fri)
- Benefits Helpline 0300 999 0055 (10am - 12pm Mon, Wed and Fri)
- Complimentary information booklets for doctors and other professionals (fully referenced)
- Books and videos
- Website Contacts with legal specialists
- Conferences
- Local support group and helpline contacts
The charity is run by volunteers, most of whom have fibromyalgia.
If your Health Care Professional needs some education in fibromyalgia you can request that an FMA UK Health Professionals Pack is sent out to them. All we need is the name of the Health CareProfessional and the address of their practice. We will then send a pack to their surgery addressed from us to them.
You can request a medical pack using this form.
You can find a Support Group near you by contacting the Regional Coordinator for your area. If there does not happen to be a support group near you then maybe you can join with some other members and set one up. Support groups provide a social benefit as well as the opportunity to share tips on coping with fibro. They come in all shapes and sizes and we are often told how they have helped people.
