Painkillers – a dilemma for patients and doctors alike

Please, Doctor, don’t take my painkillers away.

That might sound like the anguished pleading of a person addicted to their pain killers, but perhaps one patient’s views on this – mine – might change your mind.

The wider issue

The move to tighten and restrict NHS prescribers from issuing opioid pain relief is well underway. It is a ‘hot potato’ matter. There have been warnings sounded from the USA about the devastating effects of oxycontin abuse in Oklahoma. Nobody wants an opioid “crisis” in the UK. There are an increasing number of articles in the national press that are alarming and only recently Matt Hancock urged the need for addiction warnings.

Health secretary Matt Hancock stated in a recent article by The Guardian:

“It is vital that anyone who is prescribed strong painkillers takes them only as long as they are suffering from serious pain. As soon as the pain starts to alleviate, the drugs have done their job, and it is important to switch to over-the-counter medications which do not carry the same risk of addiction.”

However restricting access could also make these sorts of painkillers less available for leg ulcer patients, like myself, who have suffered with chronic, non-healing, extremely painful multiple leg wounds. This disturbs me not only because such painkillers brought swift and beneficial pain relief to me when I was becoming suicidal about the pain I was undergoing, but also, having got the pain under control, this enabled high compression bandaging which brought about superb healing results which would not otherwise have happened.

John’s experience

I don’t want leg ulcer sufferers going through the same ordeal as me now and in the future, to find this avenue to good effective treatment being blocked off because of a well-intentioned campaign with this unforeseen consequence.

Opioid painkiller prescription is already extremely tightly controlled in my experience. I was constantly monitored for my rate of taking the pills. Renewals were only issued upon face-to-face appointment with my personal GP, or if unavailable, with her permission, and my computerised medical file had a huge red flag on the front warning that I was on opioid painkillers. I might as well have had a tattoo on my forehead.

In addition, once armed with my new opioid scrip, my pharmacist, who had got to know me pretty well, and knew my dosages to the nanogram, kept a keen eye on things. He agreed to a home delivery once when I was immobilised through extreme pain, but I still had to drag myself to the front door and sign. There was very tight control throughout the entire process, and quite rightly.

I was also referred to Pain Management specialists at my local hospital, who could see exactly what I was taking. I was told it was time to get me off the morphine and I should make sure my GP reduces the dosages at my next scrip renewal. I’d only just got on the damn things and here was someone who’d only just met me giving me the official ‘Party Line’ – morphine bad, must stop. Forget what had brought me to Morpheus’ kingdom – the desperate need for pain relief and consistent pain management.

Despite these grumbles, I knew then in my heart, and I continue to fully accept now, that the NHS was keeping a watchful eye on me because I had become an opioid painkiller ‘fiend’, and for all the right reasons, my welfare and survival, they wanted to make sure no harm came to me as I went through these sensitive waters.

I want to make clear that the opioid painkillers prescribed to me gave me no pleasure. They made me feel drowsy, and I slept a lot, and I had vivid and quite frightening dreams which I was able to recall upon awakening. They constipated me so I took a daily strong laxative. I now know they also changed my personality in that I became moody, dull sometimes, short-tempered at other times, and insular, my friends, family and loved ones have since told me.

However there was this knock-out trump card – it killed the pain. I could function. I had been through experiences of pain at levels I had never before imagined could exist, and for so long, that this had become an over-riding priority in itself.

If someone reads this, who has some knowledge about leg ulcer pain, I’d like to ask – if I had got more effective pain relief when my leg ulcers first erupted, might it have been possible to get me into high-compression bandaging treatment much sooner and controlled the condition? If so, I hope the medical authorities take due note.

My ‘pain management’ deal with the opioid demon was that until my leg ulcers and the colossal pain had gone, there was no way I would have wanted to cut or stop my opioid intake, and I am still of that view today.

My opioid painkiller was oral morphine sulphate (pills). This is a commonly prescribed painkiller.  My Morphine sulphate prescriptions were split between slow-release tablets taken before sleep and upon getting up, and some stand-by tablets for breakthrough pain, which I could use when needed for that sort of bad attack. I understand that I was recorded and monitored as being on a moderate-to-high dosage.

Eventually, when my ulcers healed up, after excellent treatment by one of the Legs Matter campaign’s member bodies, Accelerate CIC (I declare an interest as a patient of theirs), my GP set about weaning me off my meds. There was no ‘cold turkey’ and, if anything, I remember wishing things could be speeded up. My GP would gently admonish me that this was not the way to go about it, that there was no hurry, and to follow the slow reduction route. It took about a year.

One of my strongest memories of the early onset of my leg ulcers was the extraordinary pain they caused me and the hopelessly inadequate painkillers I was prescribed. I still think this state of agony was allowed to go on for an unjustifiably long time by my clinicians, before finally I was given morphine sulphate at sufficiently large dose to bring about pain relief.

I am a middle-aged, well-built, tall male. My body has its own parameters when it comes to what it can endure, and what type of medication and at what strength, before any pain relief is achieved. In other words, I could ‘handle’ this substance at this dose, and anyway if it hadn’t worked, I’d have been the first to say so and ask for something else.

Why did it take so long for effective opioids to be given to me? I believe that my clinicians at the time, perhaps not particularly experienced in treating severe leg ulcers, erred for far too long on the side of caution because they were responsible people and did not want to unleash some form of opioid addiction upon me. I paid a pretty heavy price for their caution, which haunts me to this day.

I worry that if my history of leg ulcer pain were to repeat itself, I might not live through what happened to me last time if denied adequate pain relief – because without the pain relief from those opioids as part of my eventually very successful NHS treatment, I would not be a functioning person and a passionate patient advocate for leg ulcer sufferers today.

A clinician’s perspective

by Alison Hopkins MBE

Clinicians and politicians are right to be very concerned about the excessive use of opioids. As with all medication, due diligence must be done so that patient harm or over use is avoided. But the story we often hear is that pain is not well managed for people with leg ulcers; this is also evident in the clinical literature. Being bold and focussed on pain relief will enable better tolerance of compression therapy thereby creating a swift healing environment and consequently a rapid reduction in the need for analgesia of any kind.

John’s personal story is very difficult to read. It is raw and close to the bone. But we cannot look away and say that ‘this does not happen here’.

In all the quality of life literature, pain is the key aspect that patients do not feel is appreciated, that it is not tackled consistently. John speaks about being able to tolerate the treatment once his pain is under control. This is so obviously essential, but often patients are labelled first as ‘non-compliant’ because they remove the compression bandage or cannot tolerate high compression. We need to dig deeper, ask the right questions to understand the ‘why’. Like all health issues, prevention is so much better and easier than cure.

Worried about addiction?

If you are worried about your pain management, the type of tablets you have been prescribed or the effect on your life, please see your GP to talk through your options. Or if your worried about addiction for yourself, a friend or family member – speak to FRANK via their website or call them on 0300 1236600