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Good and Bad news for sufferer's this week

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The last week of April was a good news bad news week.  First of all this was the week we learned that there was to be a Westminster Hall Debate on Fibromyalgia. Something we had been working towards with our supportive MPs for some time.  And then we got the bad news.  NICE finally replied after 22 months to our application to have guidelines issued for the treatment of fibromyalgia.

Your topic has now been assessed against the NICE topic selection criteria and has not been prioritised as a topic to be considered further for the NICE work programme.

This was doubling disappointing as Sir Liam Donaldson (Chief Medical Officer) in his annual report had said, Up to 5% of the population are affected by chronic widespread pain of unknown cause, including diagnoses such as fibromyalgia.

The section entitled Pain: Breaking Through the Barrier while describing pain problems in general certainly fitted with all the difficulties experienced by people with fibromyalgia.  The recommended actions were also good news and these are given in full below.

  • Training in chronic pain should be included in the curricula of all healthcare professionals
  • Consideration should be given to the inclusion of the assessment of pain and its associated disability in the Quality and Outcomes Framework for primary care.
  • For patients in hospital, a pain score should become part of the vital signs that are monitored routinely.
  • The feasibility of a national network of rapid-access pain clinics providing early assessment and treatment should be explored.
  • A model pain service or pathway of care with clear standards should be developed by experts.
  • Agencies involved in the management of patients with chronic pain should form local pain networks to work together to improve the quality of local services.
  • The Health Survey for England should routinely collect data on the impact of pain on quality of life.
  • If all of these are adopted and the pain of fibromyalgia is treated appropriately as a result it would change the lives of so many people in the fibromyalgia community.

We hope the Westminster Hall Debate will discuss the NICE decision and the points in the above report.

Stop Press Westminster Hall Debate.
The debate on the 5th May on fibromyalgia clearly laid out the problems faced by medical professionals and patients.  Delays in diagnosis and treatment were emphasised and the effect of this on people’s lives clearly shown through several case studies.

We would like to thank all the MPs who represented their constituents during this debate with their personal stories and researched knowledge.  We would especially thank Rob Wilson for his keynote speech outlining fibromyalgia and its impact on all areas of life.

Parliamentary Under Secretary of State in the Department of Health Ann Keen, recognised that quality of care needed to improve but replied mainly with information about existing initiatives that should impact on fibromyalgia, including the musculoskeletal framework and Lord Darzi’s report.  She also referred to the professional website NHS Evidence which gives guidelines to medical professionals.  It was unclear what evidence existed here for fibromyalgia but it is accessible to the general public as well as medical professionals. 

The NHS Choices website was also mentioned as a good source of information and earlier it had been noted that this had been updated through intervention from the voluntary sector.  The minister thanked the voluntary organisations for raising awareness of fibromyalgia with the general public and medical professionals. It was impossible to prioritise all the conditions that seemed to warrant it, but hoped this debate would go some way to raising the profile.

The minster answered several questions about the refusal from NICE to look into guidelines for the treatment of fibromyalgia.  She stressed that NICE is an independent body and therefore makes its decisions without intervention.  MPs were certain that if fibromyalgia were to be given a higher profile by the Department of Health NICE would be influenced by this, but the minster repeated that she was unable to influence their decision.

She also corrected a comment that access to a pain management programme was not part of the 18 week deadline for treatment.  The time from a visit to the GP to receiving treatment should meet the 18 week deadline.

On improved training for medical professionals she explained that the department does not specify what is included in training programmes and this needs to be voiced with the professional bodies involved –e.g. The Royal College of Surgeons.  When asked about ensuring money was available for training updates the minister expressed the view that the system of transparency in place would ensure that money earmarked for training would be used for that and not to cover short falls in other areas.

The minister mentioned meeting with the Chronic Pain Coalition and the talks about ensuring pain assessment is routinely used, with the development of a measuring tool for this.  We are a member of the Chronic Pain Coalition and are attending their meeting in the House of Commons on the 11th May.

It would seem from the answers that the Department of Health expects fibromyalgia to be included in the initiatives already in place and we will have to keep up the pressure and raising the questions to ensure that this happens.

The debate can be watched here and the report of the meeting is here.

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