MENTAL HEALTH

Published: 09/12/2004, Volume II4, No. 5935 Page 24 25 26

Will choice be an empty promise that never delivers for mental health service users? Emma Forrest investigates

If every UK taxpayer paid a pound to the NHS each time health secretary John Reid mentioned the word 'choice', its coffers would increase considerably.

Yet mental health is the one area of health service provision that has been conspicuous in its absence from the reams of ministerial speeches on the subject. In the 74-page Building on the Best: choice, responsiveness and equity in the NHS, mental health is only briefly mentioned. Yet it was one of the areas for which an expert task force was set up last year. It all started so well, so what went wrong?

The task force - chaired by Rethink chief executive Cliff Prior, a passionate advocate of choice for mental heath patients - delivered its report just over a year ago.

And then things went rather quiet. Part of the mental health task group's report is quoted in Building on the Best. The group's 'particularly comprehensive set of recommendations' is acknowledged and we are told that the National Institute for Mental Health in England will continue to build capacity to 'allow the system to support choice and ensure equity of access'.

But until recently there has been little evidence of this. Mental health has not featured in the speeches around choice made by Mr Reid, and the trail seemed to have gone cold. Privately, leading mental health figures say they are concerned that not enough effort is being put into the work, although there are signs that next year may see those fears being calmed.

NIMHE promises a 'national debate' on what a choice strategy and framework will look like, to take place early in the new year, with a final strategy and framework likely in spring 2005. An 'informal discussion document' has been developed to inform the debate, but was not publicly available.

NIMHE has confirmed that the choice agenda will cover four areas: access and engagement, choice of treatment pathway, personal care plans and choice of provider. These are the key themes that come up time and again when choice in mental health is discussed.

'Everyone who uses mental health services is entitled to the optimum opportunity to make choices about the services they need, ' says a statement from its director of underpinning strategies, Ingrid Steele. 'This personalisation of services is the main driver of NIMHE's work on choice.' Mr Prior says: 'Trust chief executives have picked up the choice message but not always seen how it could be applied to mental health. But there is no area of care where choice is as important as it is in mental health. Mental illnesses are disengaging in themselves and any service that tells you what treatment you are going to get, that has a whole history of compulsion, is antitherapeutic in itself.

'There is still a one-size-fits-all service. Everyone is offered and some are compelled to take medication and there are grotesque inequalities in the experiences of ethnic groups. If choice is not given the attention it deserves, then the only reason can be stigma [about mental health].' 'We have to accept what choice means in mental health, ' says Leicestershire Partnership trust head of service redesign Liz Howe. 'It can mean a choice of appointment times, whether or not service users will take on the medical model of care, whether they would prefer to receive care from a voluntary sector organisation. But it is really important to users - they want to know why they should not get the same kind of choice as every other part of the service.' In some ways, mental health services have led the way in user involvement. The involvement of service users in the shaping of policies, recruitment of staff and the design of their care plans are often held up to acute care as best practice. Ms Howe is the local lead for the mental health improvement partnership, a NIMHE programme being piloted in four areas, that aims to put service user experience at the heart of service redesign. Choice is a central part of the programme.

Mr Prior points out that in some areas, 'choice' is yet to apply to the most basic human needs.

'Some of the things that came out of the task group's research were horrifying. It showed how institutionalised some things still are for longstay patients, those who experience high levels of disability. Choice to these patients meant a drink of water when they wanted it.' -26 When coming from such a low base, how and where should choice be applied? National mental health director Professor Louis Appleby says that many within the service have a problem with the actual term; as for them it is something that has been shaped for acute care. He says it is vital to stress that this is not a system devised for the acute system that will be dumped on mental health without modification.

'Choice is a loaded word. Some people are unsure about what it really means. As it is often about choosing where we go for treatment, some see it as not being in the spirit of strengthening community care. It is up to us to define it in a way that meets the needs of mental health patients.'

A loaded word

Acknowledging that access to talking therapies is the single most requested choice of access requested by service users (see box, page 25), Professor Appleby had hoped that the Healthcare Commission would mark trusts on how much access to them is available.

However, he proposed criteria released last week did not feature this, although trusts are to be encouraged to offer 'a range' of treatments.

He also hopes that information on the numbers waiting for them can be improved by trusts being encouraged to keep waiting lists. This is not currently standard practice.

'We know that some waiting lists are quite long. The government will not set more targets, but trusts can set their own targets. This and the Healthcare Commission's criteria could potentially be powerful. The role of people like me is to see that the message from the department remains unambiguous, that we set themes for the service without needing targets and the service knows what is expected of it. Choice is not a theoretical or ideological term, but about the dayto-day experiences of users.' Choice in acute care can often be as simple as travelling further once to get treatment.

This is acknowledged not to be practical for mental health, as care often has to be accessed frequently and for a longer time.

'A choice of four or five providers is too simple for mental health, ' says Ann Wagner, choice lead in mental health at NIMHE West Yorkshire region and national choice group member. 'But there is a wealth of information on what users and carers want and what the service wants.' While choice cannot be bolted on, current systems could be adapted. If psychiatrists were encouraged to specialise, this could make it easier for users to have access to the specialist help they wanted.

There also has to be widespread adoption of services that give users an alternative to going into hospital, if that is what they want. Being treated at home is no use if it is staying at home that is bringing on a crisis. But it has to be a service people want to go to, and inpatient services have to be in a state fit for people to be cared in. None of the modern services - crisis resolution, assertive outreach and early intervention teams - is specifically about offering choice, but about offering alternatives in patient care that are likely to help people get better quickly. The work is also likely to have an effect on how mental health services are commissioned.

'Choice has to be at the heart of everything we do, if we are to encourage people to take up services, ' says Ms Howe.

South Staffordshire Healthcare trust mental health improvement partnership lead Sarah Hankey points out that resource limitations mean the choice agenda has to stay realistic. : 'We do not want to offer people a choice they do not actually want. It is not about offering everyone everything.

We would like to be able to offer 80 per cent of our service users something that they are happy with, with choices that we can afford. We are still capturing what people actually want.'

WHAT CHOICE MEANS IN MENTAL HEALTH

Access to psychological therapies

Otherwise known as talking therapies, these are the single most requested aspect of choice by service users.

Access varies widely.

There is little information on waiting lists, but two-year waits are not uncommon. So users are often forced to 'go private'.

'Everyone with a significant condition should be offered cognitive behavioural therapy with someone with a CBT qualification, and if it does not work they should get referred to a qualified psychologist, ' says Rethink chief executive Cliff Prior.

Suggestions to increase the amount of therapy available on the NHS include contracting independent sector providers and more effective use of trained staff within organisations, particularly in primary care. This would prevent large numbers of service users having to go to a specialist trust for help.

The Sainsbury Centre for Mental Health believes a mental health equivalent of a diagnostic and treatment centre would enable the more effective provision of talking therapies.

If someone had waited more than six months (eventually going down to three months) for therapy on the NHS, they should be referred to a provider of their choice.

However, targets around waits are unlikely.

Choice of key worker

This is the second most requested service by users, who would like to be able to choose their own key worker, without fear of consequences.

It is also thought that psychiatrists should be encouraged to specialise.

Psychiatric care is often too broadly applied and specialists would increase choice for users.

Advance treatment

Advance treatment directives enable users to stipulate what kind of care they want should they become temporarily unable to make decisions.

These can range from details of what medication they would not like to take, which doctor they would prefer not to be treated by, and who they would like to house-sit for them if they have to go into hospital.

Better information

South Staffordshire Healthcare trust is looking at kite-marking internet sites on a range of topics such as hearing voices, to stop people finding and reading unhelpful information.

They are also working with GP practices to offer self-help books on prescription.

Find out more

Choice, Responsiveness and Equity: top proposals on mental health consultation paper www. rethink. org

Mental health improvement partnership www.NIMHE. org. uk/priorities/mhip. asp

Key points

The concept of choice in health provision is not applied to mental health as much as other areas.

A framework for patient choice in various aspects of mental health service is scheduled for spring 2005.

The nature of mental health problems make patient choice a prerequisite for effective services.