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 .
INTIMIDATING PROCESS 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
‘ We nursed each other through it – there was no one else I could talk to about it at the time ... 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 .’
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 .’
SECOND OPINION 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 ‘ costcutting ’ 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 .
NO SUPPORT ‘ 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-thescenes 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 .’ DDN
Release are UK experts on drugs and drug laws and provide advice and advocacy . A non-government and non-profit organisation , they campaign for drug policies that respect the rights of people who use drugs . Contact 020 7324 2989 for advice or visit release . org . uk
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