FibroAction supports the UK Fibromyalgia Alliance

FibroAction are proud to support the UK Fibromyalgia Alliance, a new intiative proposed by UK Fibromyalgia, who produce FaMily magazine.

The UK Fibromyalgia community is currently quite complicated. There are two national charities: FibroAction & FMA UK. There is UK Fibromyalgia, producing FaMily magazine. Then there are also over 100 dedicated local & regional Fibromyalgia support groups, working tirelessly to help sufferers and raise awareness. These support groups are all independent charities, whether they are registered charities or not and whether they are working with a national charity, the NHS or completely independently. There are also a number of other commercial organisations, such as the UK FM/ME Clinics, who have been working to raise awareness of Fibro.

UK Fibromyalgia have proposed the set-up of a UK Fibromyalgia Alliance, which they and we hope can become the rallying point for all the various individuals, groups and charities in the UK Fibromyalgia community. If a majority of the UK Fibromyalgia community make a strong commitment to a common set of aims, then politicians and the medical community will have to sit up and take notice of the agenda we set.

The UK Fibromyalgia Alliance will be made up of member organisations, all with their own structure and tasks, but who agree to work together to promote the aims and objectives of the Alliance, within a transparent and accountable structure.

As part of this, The UK Fibromyalgia Alliance Manifesto has been proposed, which is detailed below.

The UK Fibromyalgia Alliance Manifesto

Aims

1. That all people with Fibromyalgia in the UK should have access to the mechanisms needed for fast and accurate diagnosis.
2. That all people with Fibromyalgia in the UK should have access to effective, evidence based treatments.
3. That all people affected by Fibromyalgia in the UK should not be subject to discrimination because of the condition, including discrimination by employers, medical professionals or the state.

Objectives

1. To create an Advisory Board for the UK Fibromyalgia Alliance made up of Advisory Board Members, advisers and experts from the member organisations, so that all these experts can benefit the whole UK cause and community.
2. To develop an evidence-based integrated care pathway (ICP) for the diagnosis and treatment of Fibromyalgia in the UK. This would involve organising a task force of Alliance members and Advisory Board members to oversee the development of the 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.)
3. To work to get the Fibromyalgia ICP accepted by the UK medical profession and the NHS. This would probably be through a combination of publicity, events, use of current contacts and working with the All Party Political Group (APPG) for Fibromyalgia.
4. To develop basic evidence-based information on Fibromyalgia that is agreed by the Advisory Board of the UK Fibromyalgia Alliance, that can be published by the Alliance members jointly and that can be used by any advisory members as the basis for their own information packs (i.e. a consensus on Fibromyalgia that can be used so we are all "singing from the same hymn sheet").
5. To work to get regional Fibromyalgia multidisciplinary clinics set-up across the UK.

If you run a UK Fibro charity, support group or related commercial organisation and your organisation agrees with the principles below, then you can also sign up to the UK Fibromyalgia Alliance through the UKFibromyalgia.com website here.

Principles of the agreement when signing up to the UK Fibromyalgia Alliance
(note: "We" refers to your charity or organisation):

1. We agree with the Aims of the UK Fibromyalgia Alliance.
2. As a member of the UK Fibromyalgia Alliance, we will work to promote the Objectives of the UK Fibromyalgia Alliance.
3. We agree to share relevant, appropriate and non-confidential information with the rest of the UK Fibromyalgia Alliance in order to promote the Objectives of the UK Fibromyalgia Alliance and work towards the Aims of the UK Fibromyalgia Alliance.