Sufferers of a chronic pain condition are being left in agony because of a ‘cruel’ ban on drugs by NHS chiefs, campaigners have claimed.
Fibromyalgia patients – who endure body-wide pain, muscle stiffness and headaches – had been offered powerful painkillers, including pregabalin and tramadol. But recent guidance on the management of chronic pain by NHS spending watchdog, the National Institute for Health and Care Excellence (NICE), has prohibited their use.
Patients are also being denied NHS-approved non-drug therapies that are proven to work, including a water-based treatment called hydrotherapy, as local health chiefs won’t fund it, claims Des Quinn, chair of Fibromyalgia Action UK.
He claims that a change in NHS rules regarding painkillers is a ‘major step backwards in the treatment of fibromyalgia’.
Celebrities such as Lady Gaga, pictured, and Morgan Freeman suffer from the chronic pain condition fibromyalgia
Mr Quinn adds: ‘Patients’ quality of life is being reduced as a result. Drugs such as tramadol are backed by good scientific evidence, which NICE failed to consider.’
It is not known what causes fibromyalgia, which affects more than two million people in the UK. The condition tends to develop between the ages of 25 and 55 and, alongside pain, patients report difficulty concentrating and digestive issues.
Some studies suggest it is triggered by an infection, an injury or a period of emotional stress, and there is currently no cure.
Famous sufferers including pop star Lady Gaga and the Oscar-winning actor Morgan Freeman.
Prior to 2021, NICE had no specific guidelines for fibromyalgia, but told doctors to follow the rules for nerve pain. These recommended that patients were offered painkillers, including the now-barred drugs.
A report by the European Alliance of Associations for Rheumatology concluded that the balance of evidence was in favour of the use of medications such as pregabalin and tramadol.
However, rising numbers of Britons becoming addicted to these painkillers – as well as a concern that they were not effective in all patients – caused health chiefs to crack down on prescriptions.
One of Britain’s top fibromyalgia specialists, Dr Deepak Ravindran of the Royal Berkshire Hospital, says the banned painkillers are being held to too high a standard.
He also adds that a wider range of treatments should be available because the causes of fibromyalgia are so diverse. Other permitted treatments include exercise plans and cognitive behavioural therapy. Hydrotherapy should also be offered to help improve musculoskeletal symptoms but patients are finding it increasingly difficult to gain access to a pool due to closures during the Covid-19 pandemic.
Patients also report being unable to secure cognitive behavioural therapy due to long waiting lists, says Prof Gary Macfarlane, clinical chair in epidemiology at The University of Aberdeen. ‘Once patients have had the long road to diagnosis, they’re often just left to get on with managing their symptoms without NHS support,’ he adds.
Even when they are provided with a recommended treatment, Dr Ravindran is critical of how health bosses limit them, adding: ‘The NHS has always paid for a set of six sessions, but for long-term conditions you need ongoing support. The NHS hasn’t figured out how to sustain that.’
Instead of tramadol, pregabalin and sedatives, NICE guidelines suggest fibromyalgia patients are routinely offered antidepressants, which research suggests have an additional effect in reducing pain.
Dr Ravindran explains: ‘These drugs are worth a trial, but patients struggle to get off them too – they can cause withdrawal symptoms.’
Doctors at hospital-based pain clinics may still be willing to prescribe pregabalin and tramadol, he adds, so patients should seek a referral if antidepressants aren’t working.
Fibromyalgia sufferer Mel Wright, 41, from Penrith in Cumbria, has seen her quality of life collapse since the new guidelines came into effect. Previously, a combination of tramadol and pregabalin were allowing her to ‘live a fairly normal life’.
It is not known what causes fibromyalgia, which affects more than two million people in the UK. The condition tends to develop between the ages of 25 and 55 and, alongside pain, patients report difficulty concentrating and digestive issues. Some studies suggest it is triggered by an infection, an injury or a period of emotional stress, and there is currently no cure
But now she is in such excruciating pain every day that she has had to give up her job as a receptionist. The agony has also forced her to install a stairlift at home and be confined to a mobility scooter when outside. For several months, she was bed-bound.
Mel has subsequently been prescribed the antidepressant fluoxetine, but says that while it counteracts her depression it has not relieved the pain.
‘I understand that painkillers don’t work for everyone and they don’t want people on them long-term if they’re addictive,’ she says, ‘but they shouldn’t withdraw them from people they’re helping. It makes our lives a misery.’
A spokesman for NICE said: ‘Fibromyalgia guidelines emphasise the importance of shared decision making and fostering a collaborative, supportive relationship between patients and healthcare professionals.
‘NICE takes into account the best available evidence, and we are committed to making changes when it suggests this is appropriate.’