This is the second column from the drugs team at Release, where every other month we are putting forward a new case study from our advocacy work to share with others in the sector. Our hope is to spotlight some of the difficulties people face in treatment and shine a light on how people might advocate, both for each other and themselves.
This time we are writing with Allie, a patient who reached out to Release for support with her pick-ups and under-dosing. Allie has been on the same dose of OST for about ten months. However, her current dose doesn’t hold her, with severe effects from the under-dosing – daily insomnia, trembling, sickness, headaches, anxiety, diarrhoea, nervousness, and dizziness. In short, Allie has a textbook list of withdrawal symptoms, which she could reel off to any doctor if they asked.
Because of the withdrawal symptoms, Allie was buying heroin to manage. This was neither what Allie wanted to be doing nor was it financially sustainable. To make matters worse, drug alerts for nitazenes, as well as confirmed reports of xylazine in Allie’s local area, meant her heroin was coming from an increasingly unsafe supply.
So, Allie approached her service to discuss a possible increase to her medication. Release supported Allie in the subsequent review. Though she is formidable at self-advocating in her own right, she feels more confident with an advocate there.
For a number of reasons, Allie was put onto daily pick-up of her medication during the review, having previously been on a weekly script. During Allie’s appointment, we advocated for a timely review of the pick-up situation, stating clearly that continual daily pick-up would not be feasible in the context of her health and disabilities.
Regular pharmacy attendance, for some patients, increases their risk of harm rather than reduces it – these patients shoulder the financial and physical burden of attendance, and the practice reinforces stigma and a feeling of being untrustworthy. Allie has several disabilities, which make going outside regularly very difficult, whether it is to get food, go to the GP, or see loved ones. When on daily pick-up, what energy Allie does have is expended on pharmacy attendance.
Still, Allie negotiated and met the service in the middle, agreeing to supervision on the promise that it wouldn’t become over-supervision, meaning without purpose and with no end-date in sight. We asked for a timely medical review for Allie, but what Allie got was new barriers. The service told Allie that she would need to present ‘clean’ urine screens before any medical review, which was needed both to re-evaluate pick-ups and to discuss Allie’s dose. Imagine an equivalent – once you’ve got yourself better the doctor will see you.
Such a barrier felt contrary to the basic premise of OST, which is to prescribe in place of street opioids at an adequate dose to alleviate all withdrawal symptoms, as well as the basic premise of harm reduction, which is to meet people where they are at.
More concretely, the barrier is also contrary to the guidance of the ‘orange book’, which advises in chapter 4 that, for patients on OST who are having to buy street opioids, prescribers could ‘increase dose, if inadequate’ – something that can only be arranged in a medical review.
What Allie was thus left revolving in was a chicken-and-egg situation. She couldn’t reduce her heroin use without an optimised OST dose, but she couldn’t get that optimised OST dose without reducing her heroin use.
Over the last few weeks, Allie did reduce her heroin use to nothing, without any support and in a way that she fears is not sustainable. She is struggling and very sick, but her need for her pick-ups to be reviewed and reduced is so great that she is simply pushing through. Allie cannot pay for regular travel, has caring responsibilities, and does not have the energy to walk every day. She is hoping for a medical review soon. But it doesn’t change the fact that she is being asked to do things in the wrong order – sort things out before getting support.
In Allie’s words, which put it best, ‘I always think after these decisions, have I done something wrong? Am I doing something wrong? Is there something I should be doing that I’m not? Maybe I’m approaching the service wrong. But I feel like I’m always pleasant to them – I’m not rude. It’s just that the more honest I am, the more I feel I get punished.’