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FMA UK Statement on NICE draft guidelines

Guidance on chronic pain is to be welcomed but we have concerns with the recent draft guidance and these have been echoed within our community. We have concern about working treatments potentially being withdrawn from patients without replacements. Increased pain, symptom flareup as well as withdrawal symptoms are not what chronic pain patients need. 

We understand these guidelines have introduced chronic primary pain as opposed to chronic pain. The lack of clarity of what conditions are considered within these categories and where the line is between the two will leave scope for misjudgements.  

We already have many testimonials of patients having medications removed without alternatives and without any tapering advice. We do not want this guidance to increase these situations. There are already health professionals saying to patients that they “do not believe in this fibromyalgia” and “your meds are not going to help so I am stopping them”. This removes hope and confidence in the health professional. There needs to be focussed guidance on medication transitions and follow-ups. 

It is also of great concern to us that the guidance requests more time to explore options with the patient, but the real world is seeing less time spent in consultations and longer waiting lists. The results of Covid19 resource utilisation will not make this any better. Pain patients and those with fibro are already fighting an uphill battle with access to treatments, consultations, and quality of care. The media messaging of this draft guidance has hit those that are only able to work or have a life through these medications with a fear of being without their help.  

We would hope that NICE references the excellent resources and work that the pain community has created to help patients improve their quality of life. Such resources as the Pain Toolkit and Pain Concern’s Navigator tool should feature. 

We have received contributions from the community, members of our medical advisory board and other interested parties that have helped shape our submission to NICE on these guidelines. We have also contributed in discussions with other organisations that have a shared interest in supporting those with chronic pain. Our submission consisted of 17 points that range from improved clarity to the need for more research. We hope that NICE reflects on all the suggestions from the pain community and improves these guidelines to better support those suffering with all types of chronic pain. 

Des Quinn  
FMA UK Chair


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