As chronic pain patients have feared, it looks like the war on opioid painkillers has reached the UK.
There’s been a spate of reports in newspapers recently, highlighting the extent of opioid prescribing in the UK and the dangers associated with it. The Times published a lengthy report showing that there’s been a sharp rise in the number of painkiller prescriptions issued, especially in the North, where they’re prescribed four times more than in London. The Daily Mail covered the sad tale of a woman who accidentally overdosed after initially being prescribed opioids to cope with back pain. The BBC has found that Swansea has the highest rate of opioid deaths in the country where 16 people per 100,000 died from the painkillers in 2017. And who could forget the Ant McPartlin addiction feeding frenzy? I could go on and on. The reality is that the statistics are scary. There’s no doubt that these medicines are potentially addictive and potentially lethal.
What’s going to happen?
Off the back of these reports, the National Institute for Health and Care Excellence, known as NICE, which functions as the health watchdog, has decided to create new guidelines for GPs on prescribing opioid painkillers. The guidelines will cover safe prescribing of these drugs and how to manage patients withdrawing from painkillers. They’re expected to be completed and issued to GPs in 2021.
Are opioids simply bad?
If you read the newspapers, you’d probably come away with the impression that opioid medicines are killers that should probably be banned altogether. They’re presented as horror drugs that will turn you into a junkie and destroy your life. Much is said about the fact that most heroin addicts started off taking opioids. Whilst no medical bodies are advocating for the outright prohibition of these painkillers, there’s certainly noises being made about restricting them to patients in short-term pain or suffering with late-stage cancer.
But like we’ve seen in the USA, this simplistic narrative just doesn’t tell the whole story.
The sad tale of Bryan Spece and the patients being abandoned
Back in 2017, I wrote about the tragic death of Bryan Spece. Bryan was a US chronic pain patient who was prescribed oxycodone for back pain and carpal tunnel syndrome and according to his doctor and his family, he was doing really well on that prescription.
However, in early 2017 the prescribing environment in the USA changed. Opioids became public enemy number one after much the same sort of pearl-clutching, breathless reporting we’re now seeing in the UK press. Politicians saw a chance to score easy popularity points by competing to become “the toughest on drugs”; the reality of that, for Bryan, meant that his medication was taken away. No tapering, no support, no alternatives; nothing. For Bryan this was nothing short of a death sentence: he was found dead at his home on May 3rd 2017 from a self-inflicted gunshot wound.
And he’s not alone. Horrifically, there are now hundreds of cases like this in America, where legitimate patients have had the prescriptions that work for them taken away without any discussion. Where patients have been treated as addicts, as drug seekers, without any compassion or humanity. The problem is so common that you’ll regularly see the hashtag #patientsnotaddicts on social media; it’s become a rallying cry for chronic pain sufferers who are being abandoned and the medical personnel who are sticking their livelihoods on the line to support them.
It’s inhumane. It’s terrifying. And it’s what I fear may be coming to the UK.
What does this mean for patients and what can we do?
The first thing is not to panic. These guidelines won’t hit until 2021, but I’m already hearing from readers that it’s getting harder and harder to get hold of the painkillers they rely on so it’s best to start preparing for this now.
The most important thing is to try to work with your GP. Even if your prescription was initially given by a hospital or pain clinic, if you need to get it renewed regularly it will end up being prescribed by your GP, so it’s important that they understand what you’re dealing with. I’ve changed GPs three times in the eight years I’ve had CRPS due to a series of house moves. In each case, I made it a priority to find a GP at my new practice that I liked and felt I could develop a relationship with; yes, that did mean trying appointments with a few different doctors until I found the right one! It might mean a week’s wait for an appointment or that I have to make do with a telephone consultation if it’s urgent, but the benefit of having someone who really knows and understands me and my pain hugely outweighs the negatives. Your GP can be in your corner if they really grasp what you’re dealing with.
It’s also important to remember that the aim with using any painkiller should be to take the smallest amount for the shortest time. As patients, that’s a standard we should hold ourselves to at all times. That means always asking yourself “Can I reduce my medication?” People can be very wary of this, but if you’re able to have an honest and understanding relationship with your GP then this question doesn’t have to be terrifying. If you’re asked to reduce your intake, then I would advise at the very least to give it a go. Doctors don’t ask this for no reason; the truth is that opioid painkillers do have very nasty side effects, ranging from constipation to liver problems. It really would be much better if we could all do without or at the very least, take the lowest amount we can manage. But if you can’t reduce, don’t be afraid to say so. Doctors aren’t gods and you deserve to have a voice in your own care. Although it’s always way more valid to say “I’ve tried reducing the dosage and it didn’t work for me for this list of reasons” instead of not even being willing to try.
I don’t know what the future will hold for chronic pain patients like me who are dependent on opioid painkillers to function. I hope that the UK will adopt a kinder and more humane approach than the US, but it’s just too soon to tell. I’ll be following this subject closely and keeping you informed.