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Why use the users?
I was recently delivering a teaching session on a professional mental health course that included getting a perspective from users and carers, with a view to improving practice. I think there’s a general acceptance that this is a good thing, but it got me wondering about the origins of user involvement in services. After all it’s a relatively new thing, or is it? There are a couple of movements at the heart of this – one is often called the Survivors movement, and the other the consumer movement. I want to explore these a bit more, and hopefully this might provide some theory behind the practice when it comes to thinking about why we involve users and carers, and how to make best use of their experience.
Survivors speaking out
The survivor movement in mental health became strong in the 1970s and 1980s and followed on from other civil rights campaigns particularly in the United States. I’m sure that mental health service users have been campaigning for a lot longer than this, but the survivor movement has been very critical of not just treatment and care, but the whole medical model, and medicalisation of problems. The whole movement was borne out of the view that people who had been through the experience of mental health care were ‘survivors’ of the system and having expertise of the system gained from their experiences. Organisations like Survivors Speak Out have had considerable influence on ways of working and modernising thinking about mental health care.
The consumer movement, grew strength also in the 1970s and 1980s. Here the campaigns were about consumers of goods and services being much more vocal and active about their rights. Again like the survivor campaigns this has followed in the UK. You can see influences in things like encouraging consumers to switch electricity supplies on various consumer rights TV programmes, and rail passengers and football fans being regarded as customers – not just loyal fans. Now we see this influence in mental health services with service users being regarded as important in the delivery and planning of services. Not just patients, dependent on others for what happens to them, but being encouraged to take an active part, not just in their own care, but in promoting good care for other service users. Now there’s one obvious difference, well lots of obvious differences between electricity customers and mental health service users, but the critical one is if you don’t like your electricity supplier you can easily switch to another one. However for mental health service users that’s not so easy. You might be able to ask for a different healthcare professional, but there isn’t going to be an alternative NHS facility in your neighbourhood, so you have the service or you get none. The other critical difference is for many mental health service users, take it or leave it is not even an option. For those liable to be detained in hospital there is not a choice, in certain circumstances you may be admitted against your will. However that doesn’t mean the service user voice cannot be heard in today’s mental health services. Peter Beresford describes himself as a mental health survivor, and says why the user perspective is important. “Historically, social policy has been about those who solve problems and those who are the problem, and never the twain shall meet. What people like me are interested in, and can demonstrate, is that those who have been seen as the problem maybe have some very, very helpful things to offer in terms of developing the solution” It is the idea of the user of services being an expert on the basis of their experience of the service, and of their own mental health history.
Beware of the pitfalls
There are certain pitfalls on the way, let’s try and note them:
- Don’t promise what you can’t or won’t deliver. If a service user or carer is unhappy about mental health services that they are getting, don’t give false hope that things will be different in the future unless you can be sure of this. If you say you’ll follow up a complaint – do so. I know that sounds basic but I’ve heard many stories from carers who’ve been let down by things not being followed up. If you can’t change something – be honest.
- Users and carers don’t always have the same view, so we can’t necessarily talk about the user and carer view.
- Users and carers who volunteer their time and experience onto organisations and planning boards do an invaluable job. However to ensure we get the widest range of views, and to stop a small group of volunteers being burdened, we should try and recruit as widely as possible amongst users and carers. Let’s hear from as many as possible!
- One of the issues that raises expectations unfairly, is not being clear what the role of users and carers is in their role as trust governors, or trainers, or members of job interview panels. For example, if you have a service user on an interview panel for recruiting a new worker, what is the status of the service user on the panel? If you are using users – on a board or in interviews, be clear what their role is – are they full and equal members. If not, make that clear.
- Some service users may want support in their role. For example in sitting on a trust board, is the user on their own, or is there another user there to offer support in an unfamiliar role, or someone else in a paid capacity to support service users in that role?
- Be wary of blurring of roles. If a service user sits on an advisory committee with a nurse who is caring for them – how will this potential power imbalance be handled? It may work out fine, but it’s important to acknowledge the issue.
User and carer involvement has come a long way in the last 40 years or so. We want to see that progress translated into better services.