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RT @invisiblymeblog: @fmauk Absolutely, and this can have a huge knock-on effect to our social lives, relationships, confidence & mental he…

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FMA UK Trustees March 2010 Newsletter

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.

 

 

 

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