After 25 years of agony, Sean’s life has been transformed... by coming OFF his painkillers
As a major report calls for an end to doling out ever more pills...
TWENTY five years of ‘ oblivion’ is how Sean Jennings describes the quarter of a century he spent swallowing a daily cocktail of prescribed pills after complications from a routine operation left him battling chronic pain.
the medication — morphine-based painkillers and antidepressants — didn’t work, and even though Sean, 64, from Saltash, Cornwall, was prescribed ever-stronger doses he was still in such agony he was often housebound.
Sean was in a well-paid job as a mechanical engineer and enjoying an active lifestyle before having the operation 32 years ago. ‘I played tennis and badminton for the county,’ he says.
‘then I went into hospital for what I thought was a routine hernia operation. However, the wound became infected, which ultimately caused nerve damage and chronic pain that has stayed with me ever since,’ he adds.
He was initially put on standard doses of opioid drugs, moving to ever-stronger doses over two years.
‘All the doctors would say was, “Keep taking the medicine”. But the pain worsened and the opioids meant I couldn’t concentrate,’ says Sean. ‘As a consequence I lost my career.’
the following year Sean’s doctors added antidepressant drugs, duloxetine and nortriptyline to his regimen. Antidepressants are sometimes given for chronic nerve pain in the belief they reduce the pain messages that arrive in the brain.
However, a review last year by experts from eight universities looked at the data on 23 antidepressants and chronic pain. ‘there is currently no reliable evidence for the long-term efficacy of any antidepressant,’ reported the respected Cochrane Database of Systematic Reviews. After years on these drugs, Sean only learned about the likelihood that they weren’t helping at a tribunal in 2017 about his benefits assessment. ‘the GP there said that all these drugs I was taking wouldn’t make any difference to my chronicpain symptoms, as they only work for short-term pain, for something like three months maximum.
‘I asked this GP why I’d been prescribed them for 25 years, and he said, “to get you out of the surgery quicker”.’
DESPERATE to turn his life around, Sean asked to be referred to an NHS painmanagement programme being run near his home. when he first went he admits he was sceptical. ‘there was talk of exercises and using mindfulness and distraction techniques. I did wonder about exercise as I could hardly get out of bed. the stuff about distraction sounded hippy-dippy.’
nevertheless, he persisted and between September 2017 and March 2018 slowly cut his dose back — ceasing antidepressants or strong opioids abruptly can cause serious side-effects.
‘ I am now seven years medication- free,’ says Sean. ‘Instead of drugs I use distraction and mindfulness techniques along with exercise to manage my pain. I distract myself with anything that I love to do, such as drawing. But my best distraction is that I have a jet-ski. I also go sailing and kayaking. I am still in pain and can get bad flare-ups, but I can manage it effectively.’
Sean’s experience is emblematic of a national crisis highlighted today in a major report from the Beyond Pills All Par t y Parliamentary Group (APPG). It says psychiatric drug prescriptions for mental distress and chronic pain have spiralled to the point where ‘nearly a quarter of the adult population is prescribed a psychiatric drug in any given year’. Many of these prescriptions may be unnecessary.
the APPG report says: ‘Research by University College London in the journal Addictive Behaviors in 2022 reveals 5.4 million people in england are being unnecessarily prescribed dependence-forming psychiatric and pain-killing drugs, costing the NHS more than £560 million per year.’
the APPG is calling for an overhaul of the use of psychiatric drugs, moving to replace it with the types of lifestyle interventions that freed Sean from his pharmaceutical fog. It says this strategy is in line with recommendations by the world Health Organisation which say community support should be used to help people change their lives to tackle their mental distress, rather than doling out pills.
Lord Crisp, the former chief executive of the NHS and now co-chair of the APPG, says: ‘this important report points the way to a higher quality and more effective approach to mental health which will improve the lives of millions of people and strengthen the UK economy. It shows that existing policies are simply not working and proposes practical alternatives.’
As the APPG report says: ‘In most cases mental health problems are not essentially medical problems but understandable responses to life circumstances.’
However, the pharmaceutical industry stands in the way, warns Dr James Davies, associate professor of medical anthropology and psychology at the University of Roehampton and the APPG report’s lead author. ‘ the influence and interests of the industry have corrupted research so badly that a 2019 Un report concludes that “our collective knowledge about mental health has become tainted”,’ he says.
this is echoed by Dr ellen Fallows, a GP in Brackley, northamptonshire, who is also vicepresident of the British Society of Lifestyle Medicine, which helps patients adopt non-drug strategies to treat chronic diseases.
She told Good Health: ‘Much of the problem is driven by the pharmaceutical industry which is selling us a story we want to swallow — that only drugs can help, and they can offer easy fixes.’
She adds: ‘On top of this, GPs lack time and practise tick-box medicine that uses guidelines that are driven by pharmaceutical company research .’
For instance, a tool used to diagnose depression, the Patient Health Questionnaire, was developed by the makers of a common antidepressant. this is not to say there is no role for medication — it clearly helps some, but experts such as Dr Fallows would like to see a shift to social-prescribing schemes.
these involve activities typically provided by voluntary and community organisations. examples include arts activities, gardening, walking in nature, cookery, healthy eating advice and sports.
NHS england is backing this kind of approach, encouraging GPs to offer lifestyle change rather than drugs and says its target is for 900,000 people to be referred to social prescribing this year.
But can something as simple as walking really help with mental conditions or pain? Dr william Bird, a GP in Reading who set up the first Health walk social-prescribing scheme in the 1990s, says being outdoors ‘goes straight to our basic stress responses in the instinctive autonomic nervous system [which controls our heart rate, blood pressure, breathing and digestion]’.
LIFESTYLE change can benefit even those with dementia, says Dr Lucy Pollock, a consultant geriatrician at Somerset NHS Foundation trust, and author of the Book About Getting Older.
‘ Most of my patients have considerable frailty and medical problems, and often dementia — which has associated problems such as agitation, wandering and aggression that are upsetting for families and carers,’ she told Good Health. ‘the easy thing to do would be to give them a tablet.
‘But if you give anti-psychotic drugs to 100 of these patients only 20 would show any benefit, and numerous studies show that these drugs would also result in one extra death and one stroke. they also make people fall over and break bones. we need to be less medical and more social. there’s good evidence for the helpfulness of things that stimulate older people, such as dancing and playing games together.’
Indeed, a 2021 review in the International Journal of environmental Research and Public Health found that simply popping into the garden cut agitation in people with dementia.
Dr Pollock stresses that swapping a patient’s pills for lifestyle changes ‘should be a shared decision’. One problem is also helping doctors ‘de-prescribe’ drugs — because many can have serious withdrawal effects.
the APPG report is repeating a call for ministers to fund a national 24-hour prescribed drug withdrawal helpline and website, to support patients who suffer serious side- effects. this was
recommended in 2019, in Public Health England’s Prescribed Medicines Review, which came after lobbying by the Daily Mail and campaigners. Five years later it remains a desperately needed resource.
‘GPs tend to get into a holding pattern — patients are put on repeat prescriptions, and GPs have more urgent things to do than review them,’ says Mark Horowitz, a training psychiatrist and clinical research fellow in the North East London NHS Foundation Trust. He runs the only NHS clinic in England helping patients to stop taking antidepressants. He adds: ‘Pretty much everybody who’s come to the clinic was being medicated for normal events — they were put on antidepressants when they got divorced or lost a job — they simply went through a difficult life event.’
The longer someone is on antidepressants, the harder it is to stop, he says. ‘Our experience suggests if you’re are on them for less than six months then generally you won’t have withdrawal problems. But most people who’ve been on them for more than two years will have trouble.
‘Many patients I see have tried multiple times to stop, but they suffer strong withdrawal symptoms such as mood swings, poor concentration and dark thoughts, which their GPs misinterpret as depressive symptoms returning, so they tell them to resume taking the drugs,’ he adds.
His clinic can offer support such as giving patients a roadmap for stopping the drugs. ‘The main thing is doing it much more slowly than mainstream doctors currently advise.’
Dr Horowitz believes the need for support is huge: ‘Patient surveys suggest 40 per cent of patients feel trapped on antidepressants because of the withdrawal effects. Nationally that could mean 5 million people.’
Yet Dr Horowitz’s clinic is soon to shut as funding is being withdrawn.
And while the APPG’s report calls for better provision for social interventions, the few existing services are increasingly under threat.
It’s not all gloom, though. Over the past seven years, Sean Jennings has helped set up a chain of ‘pain cafes’ across Cornwall, where patients can learn — and share — drug-free techniques for managing chronic pain.
‘A study by Exeter University says that 70 per cent of our attendees now see their GP less regularly, and 60 per cent are weaning themselves off their prescribed drugs,’ he says.
‘Mainstream hospitals are now referring their patients directly to us. I think we’re really proving our case.’