Voices: Why new NHS guidelines could end up torturing those of us who experience chronic pain

Chronic pain pitches the sufferer into a foul hellscape in which the body becomes the enemy. For me, the worst of it is the neuropathic pain in my useless right foot.

Think of a thousand tiny needles – each of them tipped with hot acid – constantly jabbing at you. Or having someone hold you down before attacking your extremities with wire wool or coarse sandpaper.

That’s far from the only unpleasant holdover from having had a cement truck run over me, which left me spending what felt like an eternity trapped beneath its wheels. I have an undiagnosed source of pain in my left hip. My left arm, which is held together with metal, periodically likes to remind me of its existence. So does my back.

I take a cocktail of painkilling drugs to deal with this, including some of those the NHS is increasingly leery of prescribing.

Earlier this week, NHS England launched what it called a “new framework for local health and care providers” which “aims to further reduce inappropriate prescribing of high-strength painkillers and other addiction-causing medicines, like opioids and benzodiazepines”.

The framework includes serving up art or music classes for those suffering from chronic pain as alternatives to medication. Yep, if we all just sit in a circle and sing “Kumbaya” the pain will magically vanish.

The announcement hailed an 8 per cent reduction in the number of opioid painkillers prescribed “which is estimated to have saved nearly 350 lives and prevented more than 2,100 incidents of patient harm”. The numbers of benzodiazepines and sleeping pills handed out in England have also fallen by 170,000 (13.9 per cent) and 95,000 (10.2 per cent) respectively since the implementation of recommendations outlined in a 2019 review by Public Health England.

And sure, if the drugs don’t work and lives can be saved through cutting them out, how could you not be on board with that?

Well here’s the thing: sometimes the drugs do work.

The debate over the prescription of drugs to treat chronic pain caused me to ask myself a question: does this stuff work for me? Do I need it?

I have no great love for taking pills. Upon leaving hospital, I was given a bottle of morphine in suspension that I barely used despite the urgings of my family when I was in a mess. They told me I sometimes looked grey. But I was stubborn. I also reduced my other meds, then reduced them again.

I did all the things you’re supposed to do too. Distraction? I started working, nine months before my doctors predicted I would, steadily cranking up my output. I finished off an MA in the evenings. I went to see bands play live, I hauled myself to the cinema to see movies.

But here’s the thing: the meds actually helped with that. It’s hard to concentrate on writing when your foot is in an acid bath and your hip is saying “oi, you’re forgetting about me so I’m going to muck you up”, and your arm and back are queuing up to do the same. Music isn’t so enjoyable when pain leaves you gritting your teeth to get through a show you’ve paid 50 quid to get into. The same goes for movies.

Before writing this, I sat down to analyse what my medication was doing. Within maybe 20 or 30 minutes of taking it, the needles start to lose their heat and their acid, the sandpaper its coarseness. The wire wool became, if not cotton wool then at least something a lot less potent. The other annoyances eased.

The pain didn’t completely vanish. It is nearly always there to some degree. But it did become much more manageable.

Professor Stephen Powis, national medical director for NHS England, said this: “We know that patients who require prescriptions for potentially addictive drugs can become dependent and struggle with withdrawal, and this new action plan helps NHS services to continue positive work in this space having already slashed opioid prescriptions by almost half a million over the last four years.

“The plan gives clear guidance to support patients who no longer need these drugs to provide them with routine medicine reviews and move them on to other, alternative therapies where appropriate, saving both lives and taxpayer money in the process.”

OK, great. But what concerns me is that hard-pressed GPs will see this as gospel and decide to cut all their patients off, including those for whom medication is working.

I’ve spoken to pain consultants, pain sufferers, and even the occasional lawyer about this. They’ve told me this has already been happening, sometimes with deeply malign results. On occasion, consultants have written fierce letters to GPs. But what if you can’t get hold of your pain consultant? That isn’t easy in today’s NHS.

If you can’t, and the medication is appropriate, the result can be something like torture. And no, that’s not hyperbole.

There is a strand of clinical thinking that appears to hold that pain is simply “in the mind”. This is a deeply obnoxious and patronising view, but I’ve seen variants of it expressed with alarming regularity.

I hope that is not the case with Professor Powis. I hope he is willing to address the risk of people being left to suffer unnecessarily, which ought to be unconscionable to a doctor.