A patient worth saving?

We need to talk about service user involvement,
says Nick Goldstein.

Service user involvement, in one form or another, has been around a long time. An argument could be made that it’s been around since Hippocrates carved healing out of theology, superstition and belief to create modern medicine. He actually asked his patients to describe their symptoms and how their treatment was going and used their feedback to improve treatment, which sounds familiar.

Read the full article in June 2018 issue of DDN

Service user groups arrived in modern Britain with the forming of community health councils in 1974. Their stated aim was to allow the ‘public’ to participate in their own health and social care – and that public included service users.

The arrival of New Labour in 1997 marked the apogee of service user involvement in Britain. One of the government’s first acts was to legislate for greater public engagement in healthcare, so the NTA, PCTs et al all promoted, encouraged and even funded service user groups. But even at its peak, service user involvement often gave the impression of being an afterthought – something that had become a legislative obligation and hence tolerated by service providers, rather than a concept that was loved and appreciated.

A change of government in 2010 brought a change of agenda and the beginning of the decline of service user involvement. The adoption of the recovery agenda resulted in recovery-orientated services and recovery-focused service user groups, and their concentration on life post treatment meant that much of the emphasis on improving treatment and policy was lost. It also resulted in funding cuts, making it difficult to operate meaningful service user groups and furthering the disinterest in service user groups and what they had to say.

This is where service user involvement languishes at present – as an underfunded afterthought that only really exists to tick boxes. To be clear, service user involvement is gravely ill. The question is, is the patient worth saving?

The question alone will be heresy to some, but maybe the time has come to examine what service user involvement was supposed to be, what it actually became, and what it should be. Its initial aim was to empower users to improve their own health by involving them in partnerships with service providers, to improve and monitor services. That’s actually two subtly different aims – and that schism between the two aims is the root of the problem.

Firstly, there’s service user involvement as therapy for users. This could be sarcastically referred to as the service user involvement of pony riding trips and opera visits, but it would be short sighted or wilful blindness not to accept that it provides vital support and structure to many service users who are already marginalised.

It’s the second aim that’s the problem. Service user involvement has, and will, continue to be an abject failure in provid­ing user expertise in improving services and holding service providers to account.

The reasons for this failing range from the inclusive, democratic nature of the service user involvement model failing to provide the necessary level of expertise in its representatives; through to the reluctance of professional service providers to listen to amateur service users and the stigma that can be found in professional service providers’ reluctance to listen to a bunch of drug users.

Service user involvement in other areas of health and social care also suffers from this, although not to the same degree as substance misuse user groups. It seems that a service provider’s approach to it is directly proportionate to their preconcep­tions of their service users in general – which can be just as negative as those found in the general public. The blame for using such a flawed model can be spread around, but the bottom line is that service user involvement as a model fails to have an impact on treatment policy.

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 While writing this article I called several leading lights from service user involvement for research, and one question I asked them all was to name one national policy change that has been driven solely by service users. I’m still waiting for someone to come up with one – a silence that speaks volumes.

Substance misuse services are approaching major change – partly the result of changes to patterns of drug use, partly due to significant funding cuts – and it’s essential drug users engage with civil servants, politicians and treatment providers to ensure ‘best practice’ maximises resources and is as beneficial to drug users as possible. Service user involvement has repeatedly failed to provide a means of meaningful policy engagement and there’s no reason to believe this will change in the future. Consequently it’s imperative for all parties to find an alternative model.

This search for a functioning model doesn’t mean it’s the end of the road for service user engagement. Rather, what’s needed is an acceptance of the model’s limitations and a reappraisal of how to maximise its potential. Its sole aim needs to become a therapeutic tool for users on a local level, where its organic development can be supported by service providers. A meaningful service user group is always organic because it requires at least one service user, preferably with links to the local community, to manage and lead it. They cannot be artificially created or manufactured, but should rather be appreciated and supported whenever and wherever they flower.

I’ve been around substance misuse treatment long enough to see the pendulum swing back and forth, and in time the pendulum will swing back to favouring patient participation again. When it does, let’s be realistic regarding service user involvement’s role. What it does well should be supported – and for what it can’t do, we need to find another model.

Nick Goldstein is a service user

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Nothing about us…

In January 2006, Alan Joyce told DDN why effective service user involvement was so vital. This extract shows that his words are as relevant today as they were 12 years ago

There is overt hostility on the part of some practitioners to the very idea of ‘treating’ drug users, exemplified in the words of one GP to a patient for whom I advocated: ‘I am not here to provide you with free drugs. Come back when you are clean.’ Then there is the intimidating surgery receptionist who discusses the patient’s medical history or drug problem in front of other patients in the waiting room. The user feels so unwelcome at the practice that they leave and take their problem elsewhere.

If the user makes it beyond the surgery door to find a doctor who will treat them, they will still face continuing problems. One chronic problem is under prescribing – or more correctly, sub-therapeutic dosing. Many GPs prescribe methadone at levels way below government guidelines, refusing to consider a realistic dose. Understandably patients continue using on top, or relapse, and treatment is routinely associated with poor outcomes.

Another common problem is a punitive response to a user exhibiting symptoms of their condition. Opiate use is described as a chronic medical condition characterised by relapse. In no other branch of medical treatment would a patient exhibiting a classic symptom of their condition find their treatment withdrawn on ‘punitive’ grounds.

Overly rigid prescribing and dispensing practice can cause further problems. While it is understandable that supervised consumption may often be a necessary and appropriate measure to be taken when initiating, prescribing and stabilising the patient, it can all too often be applied in a dogmatic and inflexible manner that makes it very difficult for certain patients to remain in treatment.

Another common problem is a refusal by some GPs providing treatment to follow the science or evidence base – or even current guidelines. The right to exercise ‘independent clinical judgement’ is deployed as a fig leaf to cover what is, at best, down to poor training and ignorance – or at worst the doctor’s imposition of their own personal morality and belief system on the patient.

In some medical practitioners, this can give rise to a fixation on abstinence-based recovery. While for some users cessation of drug use is a laudable and achievable goal, for many others it is not. Other treatment options that focus on harm reduction and maintenance are denied to such patients. Sometimes this can have a drastic impact on treatment provision in a whole region, and we can identify such ‘problem’ areas by the number and type of cases we receive. Sadly, one can also identify such areas by high overdose and drug related mortality rates.

By listening to the patient’s voice, both drug user and treatment provider will cease to find themselves in an enforced embrace characterised by mutual misunderstanding, incomprehension, distrust and antagonism, and become equals in a therapeutic alliance.

Alan Joyce was senior advocate of the Alliance. He died in 2013 but his work is remembered by many. His article, Why do we need user advocates? was published in DDN, 16 January 2006, page 12.

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