Paul was prescribed OxyContin after an industrial injury. But that was just the start of his problems.
My name is Paul. I’m 51 and live in a small market town in the Peak District. I enjoyed a happy childhood and walked straight into a full-time job after school. At 18 I joined a local concrete manufacturing company and spent around ten years hand stacking very heavy paving slabs.
One morning at work I injured my back. This was in the days where awareness around health and safety issues was far lower than today, and I had some physio and returned to work a few days later. Over the following years I was promoted many times, but continually experienced problems with severe, debilitating lower back and neck pain.
Around ten years ago I was diagnosed with degenerative disc disease after MRI scans showed damage to five discs in my back and two in my neck, all believed to be caused by the heavy manual job I did for years. Numerous injections at the pain clinic offered no relief and I was eventually prescribed OxyContin.
Each time I visited the doctor the dosage was increased as it was no longer giving me any pain relief, until I was eventually prescribed 800mg per day – but taking 1,500mg per day. I would wake up around 2am then spend the rest of the night thinking of excuses for how I could collect my prescription early. OxyContin was the last thing I thought about at night and the first thing in the morning. At this point, I was no longer taking this amount of OxyContin to relieve the pain – I was taking it simply in order to function. I realised I had a serious problem.
One tablet was supposed to last a full 12 hours – I was taking my dose every couple of hours. However I kept telling myself I couldn’t possibly be an addict, as I had been prescribed this by my doctor. There were times when I would run out because my GP was on holiday and the locum or other doctors refused to prescribe such a high amount. I would then suffer full-blown withdrawal until I could pick up my next prescription.
Around this time I was involved in a car accident. While lying in the hospital bed the nurse asked me if I was taking any medication. When I told her 800mg of OxyContin per day, but actually almost double that, she said, ‘You must mean 80mg.’ I replied no, and my partner confirmed the amount.
I got another, better-paid job but was still taking around 1,500mg per day and was eventually let go. Sitting at home wondering what I was going to do, I started to replay things in my mind – what if that car accident was actually my fault due to the amount of OxyContin I was taking? What if I believed I was doing a good job but actually wasn’t and that’s why they let me go? I decided I’d had enough and wanted my life back. I made an urgent appointment with my doctor and said I wanted off all the OxyContin.
I was then told that there had been several meetings held about me, and my doctor had been reprimanded by other GPs at the surgery over the amount of OxyContin I had been prescribed over such a long period. I was then referred to my first drug clinic, where the drug worker said they couldn’t help me as it wasn’t heroin. Another clinic told me the same thing.
I moved back to the small town I grew up in and registered at the local GP surgery.
The doctor drew up a taper plan that I was determined to follow. Over the following months I stuck to it and was doing really well, managing to reduce from the 1,500mg down to the actual prescribed level of 800mg, then gradually further until I’d dropped down to 320mg per day.
However, this is where my journey to hell began, going around in circles from doctor referrals to drug clinics and pain clinics, being told the same old story and referred back to my GP. I was suicidal at this point. I’d done so well to reduce my dose, but could no longer see any way forward. Eventually I contacted Release who got one of the drug clinics to agree to treat me, and after an agonising few months, starting on a minimum dose of 30ml of methadone that didn’t even hold me for two hours, they eventually got me to a dose of 105ml where I was stable and no longer going through horrendous withdrawals. I reduced the methadone over many months until I finally became drug-free.
However in 2016 I was diagnosed with severe ‘central’ sleep apnoea. My driving licence was revoked and I was told after blood tests that my testosterone level was zero. I also have peripheral neuropathy from pernicious anaemia, where it is painful to walk due to nerve damage in my feet, and I still have the degenerative disc disease in my back. However, I’m looking at alternative relief rather than the legal heroin I was given that almost took my life.
My main passion and purpose now is to educate everyone about how long-term opiate use destroys lives and actually makes pain so much worse in the long term. Opiates do have a very important role to play in pain relief, but only in certain situations and only for the short term, prescribed and monitored very closely. Even though I was lucky enough to beat my addiction, I am now having to deal with the long-term health effects. Not only did my addiction take everything I had, it also greatly affected the people who I love most.
If by telling my story and raising awareness of what I experienced I can save even one person from suffering what I went through, it will have been worth it.
Findings from the 2014/15 Crime Survey for England and Wales examines the extent and trends in illicit drug use among a nationally representative sample of 16 to 59 year olds resident in households in England and Wales.
In 2014/15, for the first time the survey included questions relating to misuse of prescription painkillers (use of prescription analgesics by those for whom they are not prescribed). Findings include:
- Overall, 5.4 per cent of adults aged 16 to 59 years had misused a prescription-only painkiller not prescribed to them.
- 7.2 per cent of 16 to 24 year olds had misused a prescription-only painkiller in the last year, while 4.9 per cent of 25 to 59 year olds had done so.
- People with a long-standing illness or disability were more likely to have misused prescription-only painkillers.
- Misuse of prescription painkillers is distributed more evenly across the general population than the use of illicit drugs.
- Misuse of painkillers was similar in both rural and urban areas.
Post-its from practice
But doc… I’ve been on them for years
Addressing long-term prescribed opioid use requires an individualised approach, says Dr Steve Brinksman.
There has been a considerable increase in the focus on prescribed opioid painkillers lately, and with good reason given the alarming statistics on overdose deaths from the US alongside massive increases in prescribing in the UK.
This has resulted in improved awareness of the risks associated with these drugs, and hopefully means that careful consideration will be given before using them for non-cancer chronic pain and fewer patients will continue them where there is no substantial benefit. However we are still left with a large number of patients who have been prescribed these drugs for many years, and that brings us to the potentially thorny issue of de-prescribing.
How do we best approach this?
Some may advocate reducing and eventually stopping these drugs for all in whom there is no sizeable reduction in pain, but how to assess that? For some patients, years of taking them have blurred the line between benefit, tolerance and dependence. Auditing prescribing data can be a good start, and writing to patients and flagging notes to discuss at medication reviews are useful tools as well.
Richard is a case in point. He is 70 and has been taking opioids for many years, originally for osteoarthritis that developed in his early 50s. He has a history of depression and anxiety, was alcohol dependent for many years, and cares for his wife who is slowly dying from severe COPD.
As well as his opioids he also takes regular diazepam, although over the years the dose of this has come down. He is currently on a 100mcg fentanyl patch, co-codamol and Oramorph. He freely admits that he is dependent on these but as they were started by a doctor, he doesn’t feel he should have to stop them. I suspect this is a common scenario.
We had a lengthy consultation and I was able to explain that medical opinion was changing, that these drugs were now felt to be less effective than we used to believe, and that decreasing liver and kidney function could mean he was at greater risk of overdose as he got older. We also discussed the impact on his wife if he wasn’t around to care for her. Following our conversation we agreed that we would reduce his fentanyl from 100 to 87mcg and in six months to 75mcg, when we would discuss the situation again.
This probably wouldn’t be enough for the aggressive de-prescribers, but as a GP I can hopefully take a pragmatic long-term approach. It would be better if the situation had never arisen. However it has, and an individualised approach agreed between the prescriber and the patient seems to my mind the best compromise.
Steve Brinksman is a GP in Birmingham, clinical lead for SMMGP and RCGP regional lead in substance misuse for the West Midlands