Pushed to the Brink - Fighting for Diamorphine Access in the UK
Release worked hard to ensure the rights of patients to access their medicine was protected, even if it meant waging a legal battle.
This month, Release received great coverage on their battle to ensure that diamorphine patients were not pushed off their prescription. DDN interviewed Release's advocates and wrote a fantastic story which we are proud to reproduce below.
Three years ago, nine people in the South West of England were going about their daily lives, just as anyone else might, juggling jobs and family life with all the everyday ups and downs.
Each of them was in regular receipt of a diamorphine (heroin) script, which was working well for them in managing their dependence on opiates and giving them a good quality of life.
Then came a letter from their treatment provider – the same letter to each of them, with just their names changed. In line with ‘best practice’ they must have their treatment changed. They needed to choose a different option – oral methadone, MXL (slow-release morphine tablets), or inpatient rehab.
Four of the nine patients decided they had to challenge the decision. Jill and Helen (not their real names) talked to us about what happened and how it affected them.
"It was clear in the letter that there was no clinical opinion taken on it," said Jill. "No individual circumstances were taken into consideration – it was done purely on a cost basis." She talked to the clinical lead and asked if the patients could have a meeting with the group who had made the decision, "to go through our opinion on it and how it was going to affect us, because nobody that made that decision had any of the rest of our personal records. I was quite concerned that the people making the decision couldn’t even put a face to me."
Advised to put it in writing, Jill went home and wrote down the questions she needed answering. The reply around six weeks later "was absolute nonsense" and didn’t clarify anything. A few more attempts later, and feeling she was being ignored, she contacted Release for advice.
Claire Robbins, Release’s nurse advocate and drugs advisor, explains what came next. Release wrote advocacy letters to the service provider on behalf of the patients. They introduced themselves and talked about the case, and quoted Department of Health guidance aimed at protecting patients on diamorphine. "It talks specifically about that group and says, if anything, their treatment should be reviewed and optimised," she says.
They wanted to have a conversation; there was none. The provider forwarded the letters to their litigation department and responded: "sorry you had to raise a complaint". "We weren’t ever raising a complaint," says Robbins.
Release continued to advocate for Jill and Helen, but the provider refused to reconsider their decision to withdraw the medication, despite the fact that the patients had been on diamorphine for years and it having a significantly positive impact on their lives. "All we were trying to do was sit down and communicate with them," says Jill. "But they were not wanting to do it."
At this stage Release involved the law firm, Leigh Day, with a view to bringing legal action against the provider.
‘We would normally advocate in a way that is respectful to all parties involved, and with the clients’ best interests and rights at the heart of the process,’ explains Robbins. "In the vast majority of our cases, we will resolve a problem in a positive way with the provider and the client." But it was not possible in this case, so Jill, Helen and the lawyers at Release decided to pursue a judicial review of the decision to withdraw medication. They did this by instructing Leigh Day.
As part of the legal process, attempts were made to settle the matter. The patients tried to explain how this was affecting them – even mentioning a situation where it had happened to one of them before and led to a relapse – but felt the service wasn’t listening at all.
"We were stressed out, really worried about it for weeks and weeks before," says Jill.
"I can’t stress enough how negative this was for everybody’s mental health and the duty of care," says Robbins. "The patients were expected to go through this whole process, which was really intimidating."
With no resolution and the date of the prescription change looming, the law firm took the case to court. A second opinion from an independent consultant would be sought on the provider’s clinical decision, and in the meantime the judge gave a clear instruction that the provider must do everything they could to make sure the patients’ supply was continued. It was a temporary arrangement that the organisation would have to pay for – more expense for this ‘cost-cutting’ initiative.
Then came COVID, and the temporary arrangement stretched over a year during which the provider had to continue prescribing, as the independent consultant couldn’t meet the patients. When the consultant’s decision did come, it stated that prescribing should continue.
The stress of this experience was felt physically and mentally while trying to lead as normal a life as possible. "I lost a lot of my hair," says Jill. "We didn’t know from one day to the next what was happening." But the after-effects of three and a half years of the process have had wider implications for the therapeutic relationship – or lack of it. "The relationship had completely broken down and the patients had lost trust," says Robbins.
"We nursed each other through it – there was no one else I could talk to about it at the time," says Jill. "Claire was my only sanity really and I wouldn’t have done it without her. I received no calls to support me through the case from my service, only from my prescriber. He was the one that checked in on us."
"We had some behind-the-scenes support from workers who felt they couldn’t speak up or they would lose their jobs," added Helen.
Alongside demonstrating that the declared ‘best practice’ was actually very poor practice, the case cost the service a lot of money – "the most expensive diamorphine scripts in the world!" says Robbins. But the outcome showed that the legal process had been essential.
"At the core of this issue were a small number of patients who were threatened with having their long-term medication terminated without their consent, or even proper consultation," comments Stephen Cutter, legal services manager at Release. "Respect for patients’ rights must come first but when it comes to certain treatments, like diamorphine or other OST, this principle seemed to be easily set aside".
"We wish this challenge hadn’t been needed but it does demonstrate how the law can protect the rights of people in drug treatment. Given the importance of their medication we’re relieved that these people got the help they needed, but it’s deeply frustrating it was needed at all and the process caused months of unnecessary disruption and worry to all those affected."
Relationships are slowly being built, with help of the service’s ‘amazing’ and ‘really trustworthy’ new doctor, who is doing everything he can to tackle the latest crisis – a shortage in diamorphine supply – and is contacting pharmacies in the area to find out what stocks they have. He has assured the patients that the service will honour their prescriptions with any diamorphine they can get, and work carefully with them on titration if they need to find temporary alternatives.
Duty of Care
But the conclusion stands: that it should never have happened at all and must never be repeated.
"The law on this matter was always clear, namely that a decision to withdraw treatment was imposed upon my clients without regard to the relevant guidance and without securing their consent or engagement," says Anna Dews, solicitor at Leigh Day. "They were owed a duty of care by their service provider and had been provided with diamorphine as an established medical treatment for many decades. I hope that the resolution of this matter means that no service provider will seek to repeat this type of decision-making in the future."