Fibromyalgia Action UK (Which Fibromyalgia Friends Together is a part of) has put out the following statement about NICE’s new guidelines on primary chronic pain
With the release of the NICE guideline on primary chronic pain we can start to examine the impact it may have on patients. It is our view that the fibromyalgia community will see this as a significant step back – both in their treatment options and their ‘legitimacy’ within the health service.
In devising the guideline, the committee was looking to find best practice; yet was selective in the evidence it considered in scope. We feel that patients, with their body of first-hand evidence, are being overlooked.
There are patients who can remain in employment, maintain a good quality of life, and increase their activity levels, thanks to treatment protocols that will now be unavailable to new patients. Some of these treatments help patients to such an extent that, in time, they can reduce these medications and leave them behind.
While the committee recognises that there could be sub-groups that these medications are indeed effective for, the lack of understanding of chronic pain means that these sub-groups will be side-lined, together with everyone else.
EULAR revised guidelines for fibromyalgia gave a ‘weak for’ rating to recommendations for Amitriptyline, gabapentinoids, SNRIs, Tramadol, Acupuncture, CBT, Hydrotherapy, meditation/mindfulness, and a ‘strong for’ in relation to exercise. These guidelines are now at odds with the chronic primary pain guidance from NICE.
In addition, evidence that was included in Cochrane reviews was not considered in the committee’s initial scope of evidence. A paper entitled “Pregabalin for treating fibromyalgia pain in adults” said: “We found high quality evidence that pregabalin at daily doses of 300 to 600 mg produces a large fall in pain in about 1 in 10 people with moderate or severe pain from fibromyalgia. Pain reduction comes with improvements in other symptoms, in quality of life, and in ability to function.”
Further, the NICE guideline has excluded large, high-quality, randomised, double-blind trials that have been used to judge evidence of pregabalin efficacy and safety in fibromyalgia – and were acceptable to the FDA, EMEA, and Cochrane reviews. This has resulted in a more limited pool of evidence and ultimately means that UK patients with fibromyalgia have fewer treatment options than if they lived in Europe, America, or other regions where that evidence pool was considered sufficient.
Chronic pain is not an easy subject for the NHS, NICE or health professionals. We can appreciate the need to reduce the over- prescription of opioids and the need to engage in meaningful conversations with patients about their chronic pain. Patients will appreciate that conversation and being listened to!!
We are grateful that people on existing treatment regimens will not, in theory, face change under this guideline, but we are sure that some will be dreading their next medication review with their GP. And we have already heard of doctors whipping treatments away from patients without any tapering or explanation.
Moreover, the service delivery in relation to chronic pain is already dreadfully under-provisioned and this guideline only reduces options even further. The guideline also favours treatments such as group exercise and acupuncture that a) cannot be provided long-term due to NHS cost pressures and b) cannot be undertaken in the patient’s own home. Requiring patients to travel to receive treatment does not promote inclusivity or equality – some patients will not be able to afford to travel, others will not have the physical ability to travel.
The bottom line
People with fibromyalgia have always had an uphill struggle to be diagnosed, to be treated and to be respected for what they are going through. The fibromyalgia community believes that this guideline will be a step back in how the medical profession views them.
Of course, the guideline will certainly save some pennies on the NHS budget in the short term, but it will also result in losses to UK plc tax revenue as patients will not have access to the treatment(s) they require to continue employment.
And while this guideline is positive in its promotion of non-drug therapies, the committee’s blanket approach to all primary chronic pain and the removal of working treatments from some within our fibromyalgia community is not helpful. In fact, we believe it will be counterproductive in the short and longer term – for patients, their families, their healthcare providers, and the UK welfare system.
FMA UK Chair