An astonishing 28 million people - some 43 per cent of the UK population - are estimated to be living with long-term, or chronic, pain, affecting their ability to work, sleep, play with their children and enjoy many of the other everyday activities that most of us take for granted. Yet new guidelines introduced by NICE earlier this year have wiped out prescription pain killers and other effective treatments for these people at a stroke - a situation that urgently needs to be reconsidered, according to thousands of chronic pain sufferers.
Campaigner Claire Swain, who has experienced the debilitating effects of chronic pain herself for the past 14 years, gained the support of more than 37,000 signatories - many of whom were also chronic pain sufferers distraught at the withdrawal of pain relief medication - when she launched a petition against the NICE plan at proposal stage last year.
Despite the outcry, the guidelines were implemented in April 2021. But Swain has refused to give up and, after a concerted campaign and several rejections, has managed to get a new petition accepted on the parliament website aimed at pressuring the government to review the guidelines. (https://petition.parliament.uk/petitions/596304).
"My goal is to get 100,000 signatures so the petition will be debated in parliament," Swain explains. "We want the government to consider the evidence and hear the statements of relevant stakeholders and campaign groups, including people with long-term pain issues.
"Under the new guidelines, people like myself are only being offered anti-depressants, exercise, acupuncture and therapies such as Cognitive Behavioural Therapy (CBT) and Acceptance and Commitment Therapy (ACT) as chronic pain management because NICE no longer approves vital pain relief medications and treatments, even though these have been shown to work for many patients. These treatments are fine as part of a toolkit of options but as the only resource they are frankly barbaric."
Swain is far from a lone voice objecting to the new guidelines, with a growing number of health organisations and respected clinicians speaking out about the decision to withdraw analgesics and other medical interventions from treatment plans. One of the key objections, raised by the likes of the charity Pain Concern and the Faculty of Pain Medicine at the Royal College of Anaesthetists, is that the guidelines are based on inconsistent and unreliable evidence.
"While the alternatives on offer may help some people with chronic pain, they will not provide the quality of life and ability to function normally that many gain from appropriate pain killers," adds Swain. "When you are in such agony that all you can do is curl up into a ball, exercise is not really a realistic option. Neither are therapies such as CBT, ACT and acupuncture, which usually have very long waiting lists if they are available at all on the NHS.
"All we are asking is that parliament will take our views into account and convince NICE to reconsider its guidelines. We know that prescription pain killers and surgical interventions are not the answer for every chronic pain sufferer - we just want them to be included in the toolbox of treatment options available to us again."
The parliamentary petition, Commission NICE to Review Guidelines on Chronic Pain (published April 2021), is available at https://petition.parliament.uk/petitions/596304
Note to editors
Between a third and half (43 per cent) of the UK population - roughly 28 million adults - lives with chronic pain.
Source: BMJ Open, June 2016. (Third to half of UK population lives with chronic pain - BMJ Open)
The National Institute for Health and Care Excellence (NICE) is responsible for driving improvement and excellence in the health and social care system. Its role includes producing guidance and advice for health, public health and social care practitioners and developing quality standards and performance metrics. (www.nice.org.uk)
FPM concerns regarding new NICE chronic pain guidelines (FPM concerns regarding new NICE Chronic Pain Guidelines | Faculty of Pain Medicine) and Pain Concern statement on new NICE guidelines for management of chronic primary pain (Pain Concern Statement on new NICE guidelines for management of chronic primary pain).
Claire Swain's original petition, "Please help us to fight the cruel changes to National Institute for Health and Care Excellence (NICE) chronic pain guidelines", can be found on Change.org.
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