DDN Magazine October 2023 DDN_October_2023 | Page 18

ADVOCACY

OVER-SUPERVISED , UNDER-DOSED

In our latest column from Release , Fenella Sentance details the case of a woman facing a brick wall in her attempts to move from daily to weekly OST pick-ups

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 pickups 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-andegg 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
Regular pharmacy attendance , for some patients , increases their risk of harm rather than reduces it .
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 .’
Fenella Sentance is a drugs adviser and advocate at Release
Arina Kumysheva / iStock
18 • DRINK AND DRUGS NEWS • OCTOBER 2023 WWW . DRINKANDDRUGSNEWS . COM