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FMA UK Trustees March 2010 Newsletter

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Published on Saturday, 20 March 2010 12:12

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Welcome to the second newsletter from the trustees of FMA UK. Below we have outlined what we have been doing over the last six months.

Trustees

As a result of the recent resignation of Roger Leadbeater, there are now just 4 trustees with the following responsibilities:

The trustees will seek a new treasurer as soon as possible and would welcome applications from volunteers with previous financial experience..

Fibromyalgia media coverage

The Guardian carried a cynical article on whiplash injuries by ‘Dr.Crippin’ on 2^nd March. The article ended by saying: “Family doctors in the UK usually find that patients who have no objective signs of physical injury, but still present with persistent symptoms that they relate to "whiplash", often have more subtle and possibly psychological problems. They may even be on the slippery slope to "fibromyalgia" – whatever that is. There is any amount of bad medical science upon which both doctors and patients rely.”

Below is FMA UK’s response:

“FMA UK takes exception to the flippant, off hand way fibromyalgia is referred to in the article. It shows a lack of understanding and concern for the millions of people who suffer from this chronic condition on a daily basis. We would suggest that the doctor concerned is brought up to date on current research and we would be pleased to send a medical professional booklet to aid with this. Fibromyalgia patients often suffer years of pain before getting a diagnosis.  Although some attribute the onset to an accident involving whiplash, this is not always the case.  Many other traumatic events can act as a trigger.

Research has shown through functional MRIs that people with fibromyalgia do feel pain more acutely than others.  This is due to chemical imbalance in the neurotransmitters which enhance the sensation of pain and increase sensitivity to many external stimuli such as light, noise and temperature.

Fibromyalgia does have a psychological component in that people are having to deal with the symptoms of pain, sensitivities and fatigue every day of their lives.  In common with other long term conditions this has an effect on their psychological welfare.

Treatment for fibromyalgia through the NHS is patchy to say the least.  A recent audit of Musculoskeletal Framework, which is supposed to be responsible for treating people with fibromyalgia, showed that this had not been set up in many PCTs.  Certainly FMA UK had not noticed any improvement in the availability of treatment options since it was launched.

Of course this lack of NHS treatment leaves vulnerable people in search of treatment and can lead to unscrupulous money fleecing.  If effective treatment were available throughout the country through the NHS, money would be saved.  People with fibromyalgia could lead a useful life, perhaps being able to remain in work and not having to rely on benefits or carers to look after them.”

Magazine

The launch of the magazine was successful with more subscribers than our estimate needed to break even at the end of the year. We have several regular writers and we hope that letters will start coming in now we have given this a kick start. The distributors had a problem with the names on the address labels not matching the address, but this should be corrected next month.

FMA UK Links with Associated Alliances

UK Alliance

At a recent meeting of FibroAction, Fibromyalgia Association UK and UK Fibromyalgia, it was decided not to go ahead with the formal creation of the Fibromyalgia Alliance that was announced in the January edition of FaMily magazine, but all parties agreed to common aims. FMA UK will be working closely with FibroAction and UK Fibromyalgia to ensure that more effective diagnosis and treatment is consistent throughout the UK, and to work towards the creation of an evidence-based integrated care pathway (ICP). An ICP is a multidisciplinary outline of anticipated care, placed in an appropriate timeframe, to help a patient with fibromyalgia move progressively through a clinical experience to positive outcomes. Within the NHS, ICPs are published in a consistent form through the Map of Medicine, which all NHS staff will have access to. They will also be available through the NHS CHOICES site.

Once we have an approved ICP all three organisations will work to get the Fibromyalgia ICP accepted by the UK medical profession and the NHS. This will probably be through a combination of PCT trials, publicity, events, use of current contacts and the use of the All Party Political Group for Fibromyalgia.

APPG

At the AGM of the APPG, the following were re-elected to their posts

• Chair: Rob Wilson MP – (Con)
• Julian Lewis MP – (Con)
• Neil Darby on behalf of Sir Menzies Campbell (LD)
• Bethan Twig on behalf of Ian Lucas MP - (Lab)
• Martin Horwood MP will be joining the APPG on Fibromyalgia this year.

Unfortunately, the forthcoming general election will mean that the APPG will be dissolved, and will have to be re-constituted when the new government takes office.

In the meantime, group members are invited to use a draft letter that is being distributed to canvas their MPs and parliamentary candidates, asking them to support the creation of a Musculoskeletal Framework (MSF) and to commit to the re-formulated APPG.

Meeting with Ann Keene

FMA UK was represented by Pam Stewart, at a meeting with Ann Keene, Under Secretary for Health, along with Lindsey Middlemiss from FibroAction and Ali Reeve and Lynn Diggins from the groups of Cheltenham and Fibro Support Group N Surrey. A number of questions were asked of the Minister, including the appointment of a clinical director for the MSF and how the Dept of Health would ensure that better diagnosis and more effective treatment would be available for people with fibromyalgia.

The support for an ICP for fibromyalgia was discussed. It was pointed out that all these points needed to be raised with the medical directorate for neurological conditions. Ann Keen is to write a letter requesting a meeting be arranged with us as soon as possible.

The suggestion of collecting data about the numbers of fibromyalgia patients diagnosed and treated was given the explanation that there was a system for deciding if this was a good use of resources. When asked about GPs lack of knowledge of fibromyalgia and its possible impact on the new fitness for work initiative, Ann Keen noted the possible difficulties and said she would raise this with the relevant department.

We asked what else fibromyalgia groups could do to improve and lobby for better treatment.  Ann Keen suggested teaming up with umbrella organisations (which we do) and making closer contact with the RCN.  She also spoke about contacting any specialist nurses who could help champion more effective treatment.  We will look into these suggestions and try to keep the pressure on.

Overall we felt quite positive about the outcome of this meeting.  Having met members of the team behind the politicians and therefore still in place after the election, means we will not be starting from square one in a few months time.

ENFA

ENFA has reorganised and has managed to secure some funding from Pfizer to cover basic costs and secure further funding.  The next meetings have been scheduled for the EULAR conference in Rome in June and the Myopain Congress in Toledo Spain. It is hoped FMA UK will be represented at one of these events.

We have been asked to arrange an ENFA meeting for members in 2011 around the time of the EULAR conference in London

ARMA

ARMA is working hard at lobbying and making pronouncements on behalf of its members. Although the work they are doing backs up what we are hoping to achieve in getting effective treatment, it is generalised and does not always address the problem of lack of recognition. FMA UK is represented at ARMA meetings, and was involved in a review of their working practices, and produced an article on FM for their journal.

We will also be attending the upcoming ARMA reception at the Scottish Parliament on the 24th March to mark the launch of the ARMA Scotland Charter for Work. Developed in partnership with stakeholders across Scotland, the Charter for Work calls on policymakers, employers, and healthcare professionals to make a commitment to decrease the number of people who fall out of the workplace as a result of ill-health.

We will be joined at this event by Nicola Sturgeon MSP, the Cabinet Secretary for Health and Wellbeing, to lend her support to the Charter.  Other speakers are Ros Meek Director of ARMA, Doug Wilson, Scottish Power UK Director, Health and Safety and Theresa Fyffe, Director of the Royal College of Nursing in Scotland.

European Parliament

Pam Stewart will be visiting Strasbourg in June with the Black Country Fibromyalgia Support Group at the invitation of the MEP for UKIP, Mike Natrass.

Other News

Conferences

FMA UK will have a publicity stand at the BSR conference from 21^st to 23rd April at the ICC in Birmingham.

Preparations for Jeanne’s Hambleton’s South East conference (Pamper Weekend) on the weekend of 23^rd April are going well.

Office

The severe weather in January meant that Chloe was unable to get into the office, which had lead to a backlog of orders and responses to enquiries.

We have engaged the services of a company to manage our bookkeeping and they will be visiting the office on a regular basis.

International Awareness Day

Because the general election will probably take place around the same time as the International Awareness Day, Rob Wilson MP suggested 29^th June as an alternative date. A room has been booked for the coffee morning at Westminster on that date.

Group Leaders’ Meeting

A Group Leaders’ meeting is to be held in Stourbridge on 29th October providing there is sufficient support from groups. Information on the venue and accommodation can be found here: http://bit.ly/glm2010 and the booking form can be found here: http://bit.ly/glmform

Online Shop

The way that FMA UK offers products through the website has had a dramatic change and now allows users to track their previous and current orders and request information about products from the shop. There are a number of new features that come with the new shop but this update will allow the office to manage orders more efficiently and communicate easier with customers about their order.

Upcoming features will be the ability for groups to order online at their discounted prices and receive a purchase order form from which to pay by cheque. We will also be able to carry a larger range of products in the future and manage these better.

Email Newsletter, Twitter and Facebook

We have added a monthly email newsletter to the website that is sent to all forum users. This provides another conduit for getting information out to people. It primarily communicates what’s coming up in the next issue of the magazine, what’s been happening on the website and news of upcoming events. If you would like to receive your copy of the email newsletter please register on the forum and you will receive the next issue when it is sent out. Past issues are available online.

Social Networking sites are a growing area for charities and causes. We have created a presence on Twitter recently and are expanding our use of Facebook. These new ventures allow us to communicate easily and quickly with people and complement our website. Please check our website for more information.

New Contact Details

For some time the association has used the fmauk.org domain on our website and literature for our email addresses. We have started to use the @fmauk.org email addresses by default on any new project.

At some point in the future we will discontinue our older Hotmail and AOL addresses so it would be a good idea to update your address books to have the new entries. Below is a list of some of the addresses that you may have to use when contacting FMA UK.

Your enquiry will be dealt with more efficiently if you can use the correct address for your query.