Chronic pain patients are “terrified” in the wake of new guidelines advising doctors not to prescribe painkillers, while access to cannabis medicines remains out of reach for many.
Freya Papworth has spent over £30,000 on private pilates classes and alternative treatments to manage her chronic pain.
The 36-year-old was diagnosed with fibromyalgia only two years ago despite being in pain since the age of 13.
Unable to find any reason for her pain, as a teenager doctors blamed it on her carrying her rucksack on one shoulder, then a car accident that she was involved in aged 21. After being thrown from a horse and breaking her back at 23, they promised she would bounce back “even stronger”.
Freya spent the next decade believing she was “going mad”, suffering from severe pain, major fatigue and constant sickness, before finally getting a diagnosis at a private clinic.
“It was both good and bad,” Freya, who works part-time in IT, as well as volunteering as women’s right’s advocate, says of the breakthrough.
“It was great because it meant they finally believed me, but it’s a condition which is still considered to be all in your head.”
Half of the population
As fibromyalgia is considered a primary pain condition, according to new National Institute for Health and Care Excellence (NICE) guidelines published last week Freya’s doctors can no longer prescribe her painkillers, including opioids and paracetamol.
Instead it is recommended that patients with chronic primary pain conditions are offered a “range of treatments” to manage their pain, including exercise, CBT and acupuncture.
Pain that lasts for more than three months is known as chronic or persistent pain. In the UK the prevalence of chronic pain is uncertain, but appears common, affecting perhaps one-third to one-half of the population. The prevalence of chronic primary pain is estimated to be between one and six percent in England.
“People with chronic primary pain should not be started on commonly used drugs including paracetamol, non-steroidal anti-inflammatory drugs, benzodiazepines or opioids,” the regulatory body said in a statement.
“This is because, while there is little or no evidence that they make any difference to people’s quality of life, pain or psychological distress, they can cause harm, including possible addiction.”
Freya has battled opioid addiction twice since being prescribed them after breaking her back and knows the dangers well.
“I crashed my car and didn’t even realise when I was on Tramadol,” she says.
“I heard a bang but couldn’t work out what happened as my brain wasn’t registering – obviously I should never have been driving.
“I’d be in the supermarket in the middle of paying and I’d just stop what I was doing because I was so distracted.”
Freya has now been able to come off the opioids for the most-part and is currently self-medicating with cannabis while she explores the option of a legal prescription.
But the prospect of no longer having access to these painkillers on her worst pain days is “terrifying”.
“I absolutely agree that opioids are not good long-term for chronic pain, but doctors prescribe these tablets and then six months later tell you off for being on them,” she says.
“When you are taking them every day you actually believe you need them and you can’t function without them. I know because I’ve been there. It’s not that we’re drug addicts, you can’t help but get addicted to the drugs that you’ve been given.
“It’s a journey you have to take with a doctor to use these medicines in the short-term while you look at what else you can do to then manage your pain.”
The new NICE guidelines do emphasise a need for “shared decision making”, putting patients at the centre of their care, and fostering a “collaborative, supportive relationship between patients and healthcare professionals”.
The guideline recommends “interventions that have been shown to be effective in managing chronic primary pain”, such as exercise programmes, psychological therapies such as CBT and acceptance and commitment therapy (ACT).
The hidden costs of chronic pain
Freya believes you can’t “exercise yourself out of pain” but agrees that it is an important part of pain management. However, for her the thought of taking a yoga session without medicating first would be unbearable, she says.
“I do yoga but I couldn’t do that without the painkillers which get me on my feet,” she says.
“I spend a fortune of my own money on private classes, because group classes used to destroy me. If you’ve got a condition like mine, your stamina changes on a weekly basis and if you hold a pose wrong you could end up hurting yourself and triggering all of your pain.”
Alternative therapies and private exercise classes do not come cheap and whilst there is an option to access these through the NHS, waiting times are lengthy and the care is not always up to scratch, she says.
“I stopped counting at £30,000 because I don’t want to know how much more I’ve spent,” continues Freya.
“There is the osteopathy or massage, hydrotherapy and physiotherapy – all of these things work in tandem to get you to a place where you can manage your pain.
“I have only been offered the very basics on the NHS. There is an eight week waiting list if you’re lucky and you’ve often got to travel miles to get to these appointments. I got my first NHS therapy first appointment a year after I was referred and I was once offered circuit training.
She adds: “Fundamentally you’ve got to pay for it if you want it today.”
An alternative option?
Cannabis has helped Freya manage her pain flare ups and some of the associated symptoms such as IBS, but the fact that she can’t legally access it – particularly the tinctures and topicals which she finds most helpful – without a prescription leaves her with limited options other than to source it illegally.
NICE does not recommend the use of cannabis medicines for chronic pain and a recent report from the International Association for the Study of Pain (IASP) said it could ‘not endorse’ the general use of cannabinoids to treat pain due to a lack of ‘high quality evidence’.
She now fears she will be left without access to conventional medicines as well and that cutting off people’s supply completely will lead to a black market.
“If you’re not going to give us painkillers, give us some alternative options that we can actually access,” says Freya.
“I’m terrified of moving house and having to find a new doctor who might not prescribe. I’ve just had a flare up and have four tablets left – I’m going to have to hoard them and save them because I might not ever be able to get them again.”
She adds: “It is quite normal for someone to be in pain and not know why. To be told in that time that you can’t have pain medication you have to exercise, is just fundamentally wrong and really traumatic for that patient.”
A “positive difference” patient’s lives
NICE recommends that antidepressants can be considered to manage chronic primary pain in adults, as evidence shows these medicines may help with quality of life, pain, sleep and psychological distress, “even in the absence of a diagnosis
Nick Kosky, a consultant psychiatrist at Dorset HealthCare NHS University Foundation Trust and chair of the guideline committee said: “Understandably, people with chronic pain expect a clear diagnosis and effective treatment. But its complexity and the fact GPs and specialists alike find chronic pain very challenging to manage, means this is often not possible.
“This guideline underlines the importance of appropriate assessment, careful drug choice, exercise programmes, psychological therapies, and consideration of acupuncture in improving the experience and outcomes of care for people with chronic pain.”
The regulator is said to be producing guidelines on shared decision making and the safe prescribing and withdrawal management of medicines associated with dependence or withdrawal symptoms. These are expected to be published in June 2021 and November 2021 respectively.
Dr Paul Chrisp, director of the Centre for Guidelines at NICE, said he hopes the recommendations will make a “positive difference” to the lives of patient’s living with chronic pain.
“This guideline is very clear in highlighting that, based on the evidence, for most people it’s unlikely that any drug treatments for chronic primary pain, other than antidepressants, provide an adequate balance between any benefits they might provide and the risks associated with them,” he commented.
“But 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. First and foremost, people who are taking medicines to treat their chronic primary pain which aren’t recommended in the guideline should ask their doctor to review their prescribing as part of shared decision making. 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.
“When making shared decisions about whether to stop it’s important that any problems associated with withdrawal are discussed and properly addressed.”
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