In this piece, we look at the case of a previous drug treatment service user, Sarah, who experiences chronic pain related to long-time disabilities and has been penalised for seeking to treat her severe pain while also looking for assistance with opioid dependence.
Sarah was only five years old when she first began experiencing chronic pain. Despite this, she didn’t receive a formal diagnosis until the age of 15, and by this point she was already using heroin to manage the condition. Using illicit opiates on top of her prescribed medication soon became untenable, and Sarah entered drug treatment at the age of 19.
Patients who report chronic pain can be treated with suspicion at the best of times – when also accessing drug treatment, that suspicion is compounded. When she first presented at her local treatment service, Sarah was being prescribed a range of pain medications including opiates, diazepam and gabapentin. In order to begin methadone treatment, however, she was told that she would have to give up all of these medications – no effort was made to factor her disability into her treatment plan.
Part of the problem comes down to the fact that substance dependence and pain management are dealt with by different doctors sitting within different institutions, making it much harder to take a holistic approach.
After several years without sufficient pain medication, Sarah was fortunate enough to see a consultant at a specialist orthopaedic hospital. The consultant had particular experience working with patients with a history of illicit drug use and dependence, working from an assumption that pain patients are telling the truth and are generally not exhibiting ‘drug-seeking behaviour’. As such, the consultant prescribed Sarah an adequate amount of medication to control her pain, and took the view that to not do that would be more risky as it would leave her under-dosed and forced to top up through the illicit market.
Unfortunately for Sarah, this principle was not well understood by her other doctors, despite it being stated in the NICE guidance. Prescribers would often seek to reduce her pain medication even when she was being seen by them for entirely unrelated reasons. On one occasion in 2022, Sarah saw her GP regarding recurring eczema.
With little discussion, the doctor made the decision to completely stop Sarah’s diazepam prescription, without tapering and despite Sarah’s objections on the grounds of dangerous withdrawal. Sarah went on to experience symptoms including delusions, hallucinations, and three or four seizures every day. By the fourth day of withdrawals, Sarah turned once again to the illicit market out of desperation. After a week the prescription was quietly reinstated.
Sarah is now in recovery – for her, this means no longer using non-prescribed illicit drugs. For others in the recovery world, however, this is insufficient – Sarah has continued to encounter hostility and suspicion in recovery support spaces that deem any substance use, prescribed or not, to be unacceptable.
She’s found that a lack of understanding of chronic pain and disability is widespread across all levels of the drug and alcohol field. Since then she’s gone on to work in treatment services herself, and has worked hard to advocate for improved accessibility and inclusion for disabled and chronically ill clients.
Drug treatment services have a difficult task ahead of them, as the fractured health and social care system makes it more and more challenging to provide any person with holistic care. These services have a greater responsibility to do better by people experiencing chronic pain, as we know that without addressing the pain itself, many of the goals people come to drug treatment with will not be realised.
While structural changes are ultimately needed to address the fragmentation of healthcare, we can start to do right by patients with chronic pain by advocating for them to get the person-centred treatment they need, and – above all else – by believing them when they tell us what the problems are.
Fraser Parry is drugs advocacy and support adviser at Release