Report on the first UK Parliament Debate on Fibromyalgia Syndrome

Report by Lindsey Middlemiss

The first ever UK Parliamentary debate on Fibromyalia Syndrome (Fibro) took place in the Westminster Hall at the House of Parliament on Tuesday 5th May 2009.

The debate was secured by Rob Wilson, MP for Reading East, and the Chair of the All Party Parliamentary Group on Fibromyalgia Syndrome. Special thanks to go Rob, and his Parliamentary aides Marc and Gemma, for all the work they did in both securing the debate and preparing for it.

Despite attendance - and preparation for the Minister - being negatively affected by the debate being on the morning of the first day back after a Bank Holiday weekend and it clashing with a number of meetings, 10 MPs turned up. Ann Keen MP, the Parliamentary Under Secretary of State for Health Services attended to answer the debate as long-term conditions are her responsibility at the Department of Health. Speakers included: Rob Wilson, MP for Reading East; Philip Hollobone, MP for Kettering; Martin Horwood, MP for Cheltenham; Roger Williams, MP for Brecon and Radnorshire; Norman Lamb, MP for North Norfolk; Bob Spink, MP for Castle Point; Anne Milton, MP for Guildford

I attended the debate, providing information to MPs and providing updates via Twitter - the first time FibroAction have ever "tweeted" an event!

This debate is an important step forward for the millions of Fibro sufferers in the UK. I felt that Tuesday’s debate was positive, although no definite actions were agreed on. I was able to have a chat with Ann Keen after the debate and hope to be able to meet with her in the near future to discuss ways in which to improve awareness and education relating to Fibro.

Key points

Key points to come out of the debate were:

Fibro is surprisingly common.

Written responses to MPs' questions about Fibro have been unencouraging, with the Government having no plans to improve the treatment of people living with the condition, collect data on the condition or raise awareness of it.

Chief Medical Officer, Sir Liam Donaldson, recognised the impact of Fibro and its prevalence in the UK as a cause of chronic pain in his annual report of 2008.

A major initiative to widen access to pain services is badly needed, something that Ann Keen MP agreed with, but she was told that she needed to follow through on this.

The application for a NICE Guideline on Fibromyalgia Syndrome has been rejected. There was some debate about whether a NICE Guideline being implemented at this stage could be detrimental, and could just lead to doctors being unable to prescribe some medications already being used as treatments for Fibro. Ann Keen MP emphasised that NICE is independent of the Government, which makes it difficult for her to intervene.

Lengthy diagnosis times is a particular issue for sufferers.

GP education regarding Fibro should be a priority. It is not good enough just to look at the training of new doctors coming through the system. As Norman Lamb MP said, "We need to focus on continuing professional development for those who are already in post and who are all too often failing to give their patients an adequate or accurate diagnosis."

Help from the Government is needed in raising awareness of Fibro.

Effective treatment of FIbro needs to available around the country, on the NHS, and with services signposted by the NHS and not just voluntary bodies. At the moment, although many NHS consultants provide specialist Fibro services, these are not on the NHS Choose and Book system as specialist services and so are difficult to access. It was mentioned that one of the common problems for Fibro patients is that the lack of NHS treatment and understanding means that they need private treatment, and their families build up large debts in their attempt to help. Specialist services already running that were mentioned by name included:

• Professor John Davies and the NHS FM Clinic at Guy's Hospital, London;
• the pain management service at Russells Hall hospital in Dudley;
• the multi-disciplinary team at Bolton (where there is a specialist Fibro course and clinic);
• Poole Hospital (where Dr Selwyn Richards provides specialist Fibro clinics);
• and the course for Fibro patients being run by Essex community services in conjunction with Basildon University hospital.

People with Fibro often really struggle to access benefits.

More than 60% of all health care occurs in the community these days and one of the biggest challenges facing all Governments in the next 20 or 30 years will be the management of long-term conditions. That will include the management of chronic pain.

The NHS websites have been simplified to NHS Choices, a website for patients, and NHS Evidence, a website for healthcare professionals.

Fibro should fall under the Musculoskeletal Framework. This framework should help to improve diagnosis, management and treatment of Fibro and also supports an 18-week target for the time from referrals from GPs to the start of hospital treatment

Quotes

Highlighted quotes from the debate:

"I believe that the sheer scale of the illness and the suffering that results from it mean that it is high time fibromyalgia was taken seriously as an issue." Rob Wilson MP.

"...too many people are still needlessly suffering in pain while medical professionals struggle to reach a diagnosis." Rob Wilson MP.

"Getting an accurate diagnosis [of Fibro] is difficult, and about half of our GPs admit that the condition is often misdiagnosed." Rob Wilson MP.

"There is only so much that the third sector can do. Is it not time for the Department [of Health] to consider a nationwide awareness campaign to highlight Fibromyalgia Syndrome, and the importance of fast diagnosis and the provision of treatment? Do the millions of people who suffer with the illness not deserve at least that from their NHS?" Rob Wilson MP.

"One of the common problems for fibromyalgia patients is that the lack of NHS treatment and understanding means that they need private treatment, and their families have built up large debts in their attempt to help." Rob Wilson MP.

"Sufferers often have a sense that no one believes them, especially when they have to apply for benefits because they cannot keep their employment. They feel that no one believes that the condition is disabling, so they are left utterly alone. " Norman Lamb MP.

"Its [Fibro's] impact on relationships, social lives and the capacity to work is substantial. It is often the case that conditions such as fibromyalgia, myalgic encephalomyelitis and chronic fatigue syndrome have a greater impact on people’s lives and their capacity to function as human beings than many conditions that attract much greater attention in public discourse and in Parliament." Norman Lamb MP.

"I recognise how distressing fibromyalgia can be to those living with the condition and to their families, and I know that much of that distress is caused by difficulties recognising, acknowledging and accepting the condition and its impact. Like other chronic conditions, fibromyalgia can significantly affect physical and emotional well-being and disrupt work, social and family life." Ann Keen MP, Parliamentary Under Secretary of State for Health Services.

"I pay tribute to the hard work and dedication of the voluntary sector in helping people with fibromyalgia, especially FibroAction and the Fibromyalgia Association UK." Ann Keen MP, Parliamentary Under Secretary of State for Health Services.

Further resources

Click here to see the @fibroaction Twitter feed with its updates throughout the debate.

Watch the video of the debate on the Parliament TV website here.

Click here for the Hansard transcript of the debate.