Could new guidance change how we treat chronic pain?

When Victoria Abbott-Fleming fell down a flight of 30 concrete stairs at work in 2003, somewhat miraculously she didn't break any bones. However, damage to some soft tissue in her leg left her in constant, excruciating pain.

Doctors couldn't understand why her pain persisted and was so severe. "I'd seen lots of specialists, doctors and physios, and tried lots of treatments from TENS machines to spinal cord stimulators," she recalls. "It took seven months and 39 different doctors to find an answer, and I was finally diagnosed with complex regional pain syndrome."

Complex regional pain syndrome (CRPS) occurs when the body reacts much more strongly to an injury than you'd typically expect. Its exact cause is unknown, but the brain's signals to the affected part of the body - usually a limb - are somehow changed.

Many people with CRPS can carry on their lives relatively normally, with regular painkillers and psychological support if needed. However, Victoria's condition was particularly aggressive and eventually, she had to have both her legs amputated above the knee. Despite that, she still lives with daily chronic pain 18 years after her accident.

"It affects every aspect of my life, and that can really get to you. It takes a big toll on my mental health."

Victoria takes 56 tablets a day, including the strong opioid painkiller fentanyl, and gabapentin, which belongs to a class of drugs called gabapentinoids that are used to treat epilepsy and neuropathic pain. Without them, she says, she cannot even get out of bed in the morning.

Along with others, Victoria is worried that new recommendations for managing chronic pain, published by the National Institute of Health and Care Excellence (NICE), could see doctors withdrawing these drugs, leaving patients high and dry and without any suitable alternative.

The new guidelines

Under the new guidelines, GPs are advised they should not initiate treatment with commonly used medicines, including opioids and gabapentinoids, for people with chronic primary pain (pain that has no obvious cause or where the pain and its impact is disproportionate to any known cause) because they could be harmful.

Dr Rajesh Muglani, a consultant in pain medicine and member of the council of the British Pain Society (BPS), points out that although the blanket withdrawal of painkillers from patients who have been taking them for a long time is not expressly recommended, lack of clarity means the guidance could be misunderstood.

"It is open to misinterpretation," he comments. "A GP might say to a patient who's had chronic primary pain for years that they can't have these drugs, and that's not the case. The concern is that people will be threatened with withdrawal of analgesics when it's inappropriate."

People who take these types of pain medication over a prolonged period of time have to be monitored closely, because such medication can cause side effects like constipation, nausea, drowsiness and slowed breathing. A more serious potential risk is addiction and overdose.

"We understand why NICE is trying to make it harder for doctors to prescribe these drugs," Dr Muglani continues. "While the incidence of opioid misuse has increased, we know that for some patients with chronic pain, nothing else will work."

Evidence-based alternatives

However, the recommendations for alternative treatments made in the guidance have evidence of benefit for some people with chronic primary pain.

For example, doctors can recommend antidepressants even if patients haven't been diagnosed with depression, after talking about the relative benefits and harms. Evidence suggests that certain types of antidepressants may help improve sleep, pain, distress and quality of life for people experiencing long-term pain.

Other treatments that have been shown to be effective in managing chronic primary pain, and that the guidelines recommend, include cognitive behavioural therapy and acceptance and commitment therapy (ACT), mindfulness, acupuncture, and exercise.

Launching the guidance, Dr Paul Chrisp, director of the Centre for Guidelines at NICE, said: "We want this guideline to make a positive difference to people with chronic pain, and their families and carers.

"It highlights that achieving an understanding of how pain is affecting a person's life and those around them, and knowing what is important to the person, is the first step in developing an effective care and support plan that recognises and treats a person's pain as valid and unique to them."

The fact that guidance on managing long-term pain has been published for the first time is itself a positive move. It recognises that chronic pain, whatever its source or cause, can be debilitating and that treating it requires a formalised, considered approach.

At the same time, it acknowledges that because pain is incredibly individual, the way GPs and other healthcare professionals care for patients should be, too.

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Implications of drug withdrawal

According to Victoria, who chairs the BPS's Patient Voice Committee and founded the charity Burning Nights CRPS Support, some people have already had their drugs withdrawn by their GPs. "Patients have to appeal that decision and many of them are struggling. Lots of people cannot advocate for themselves. We're going to see a lot more mental health problems as a result," she says.

And she knows only too well the psychological impact of living with chronic pain. "There are days I can't move and I'm in so much agony that I don't want to be here," Victoria comments. "When there's no end in sight, and you get into that deep depression, it can just spiral. Suicide ideation is quite regular in CRPS patients."

She also fears for the well-being of new chronic primary pain patients, who no longer have the option of being offered drugs on NICE’s 'do not prescribe' list. As well as stronger medications like the ones Victoria takes, that list includes non-steroidal anti-inflammatory drugs (NSAIDs - such as ibuprofen), milder opioids (like codeine), and even paracetamol.

According to NICE, the reason starting people on these medications for the first time isn't recommended is that there is little or no evidence that they make a positive difference to people's lives, but can instead cause harm (like addiction).

But Dr Chrisp offered some reassurance to patients who currently rely on painkillers. "People shouldn't be worried that we're asking them to simply stop taking their medicines without providing them with alternative, safer and more effective options," he said.

Advice and next steps

NICE advises that patients on medications that aren't recommended in the guidelines should ask their doctor to review their prescribing, as part of the shared decision-making process.

"This could involve agreeing a plan to carry on taking their medicines if they provide benefit at a safe dose and few harms, or support for them to reduce and stop the medicine if possible," Dr Chrisp said in a statement.

Those discussions should properly explore any potential problems with withdrawal, he added.

Dr Muglani echoes that advice: "The guidance should be implemented in discussion with patients and any recommendations based on their individual circumstances and needs," he says, adding that anyone with chronic pain should be managed by a specialist pain clinic, under the care of a consultant in pain medicine.

In areas where GPs are unable to refer directly into a pain service, they can instead refer to another appropriate specialist in a musculoskeletal or rheumatology clinic, for example, from where an onward referral to a pain consultant can be made.

Dr Muglani and Victoria both encourage people to try the alternative treatments that NICE recommends, which may help some people. The BPS also said in a statement that it supports the inclusion of antidepressants, psychological therapies, acupuncture and group-based exercise in the guidance.

"The situation isn't black and white," Dr Muglani concludes. "We recognise the risks of giving these drugs, but with certain patients, we must also recognise the risks of not giving them."