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Good and Bad news for sufferer's this week

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Good and Bad news for sufferer's this week
Stop Press Westminster Hall Debate
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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.




Written by Des Quinn (A)

Registered Charity: 1042582