Patient choice in mental health services - building blocks or stumbling blocks?

The government has made patient choice central to its health reforms in response to what it believes are increased patient expectations about their care and treatment. Simon Lawton-Smith looks at how we are doing so far in implementing the choice agenda in mental health

To date, the choice agenda has focused largely on elective surgery, where it is intended to reduce waiting lists and drive up quality of care, utilising the financial mechanism of Payment by Results. However there are moves to extend choice more widely within NHS services, with Lord Darzi’s interim report on the NHS review asserting that “patient choice should be embedded within the full spectrum of NHS funded care, going beyond elective surgery into new areas such as primary care and long term conditions”.

This is, on the face of it, encouraging for people with mental health needs. Mental health services consume the single biggest slice of the NHS cake, yet at present few would suggest that mental health service users are far down the road of genuine empowerment in terms of exercising choice in respect of their care and treatment.

There are a number of factors underlying this, including:

the medical profession has historically taken a strongly paternalistic approach to those deemed mad. Only in recent years has there been a real acknowledgement that mental health patients should have a say in their own care and treatment - if they choose to accept any at all

a system focusing on planned hospital admissions is never going to sit comfortably with in-patient mental health care. Some 70-80% of admissions to hospital for psychiatric care are emergency admissions. When a bed is needed for a mental health patient it tends to be needed quickly, especially in the case of a patient formally detained under the Mental Health Act 1983

diagnosing a specific mental disorder is not always an exact science, and the care options and pathway for someone labelled with a particular disorder can vary considerably from person to person, with the severity of their disorder fluctuating considerably over time. This makes it harder to agree mental health tariffs under Payment by Results, whether hospital-based or community-based

due to their disorder and possible lack of insight, many mental health patients may need more support in choosing between care and treatment options than other patients. As we know that some older people in particular can find the idea of making any health choice overwhelming, there may be real problems around offering choice to older people with mental health problems

there are times when choice is deliberately taken away from mental health patients and treatment imposed without consent under powers in the Mental Health Act 1983. The forthcoming introduction of compulsory community treatment orders will increase the number of patients living with legal restrictions on their choices.

To its credit, the government has recognised the need for a different approach in mental health services, as set out in the Care Service Improvement Partnership’s 2006 publication, Our Choices in Mental Health. This approach involves four “choice points”:

life choices, so people can manage their own care as much as possible

choice of how to contact mental health services

choices about where and when assessments are carried out, and

an informed choice of care options

At the launch of this guidance, former health minister Rosie Winterton set out the government’s intention: “We want patients to be able to choose how, when and where to access help. We want them to be able to choose the treatment that best suits their needs and to access the support they need to keep or regain their independence. The guidance we are publishing today and our wider programme of work to provide greater choice will help to change that situation and really empower service users”.

So how are we actually doing so far in implementing the choice agenda in mental health?

Sadly, not too well. The findings from the Mental Health National Service Framework Autumn Assessment 2005, based on a self-assessment of 141 Local Implementation Teams across England, showed only a small number acknowledging choice as a key imperative in developing mental health services. Very few reported progress in implementing practical mechanisms for supporting choice in community settings, such as direct payments or advance directives; service access inequalities remained for BME communities; long waiting lists persisted in both primary and secondary care-based talking therapies; and many service users were not provided with information about their medication to allow them to make choices.

Despite this somewhat gloomy picture, there is broad agreement on two main building blocks that need to be in place to make choice meaningful for people who use mental health services. These are a range of adequately resourced services and access to relevant information, backed by support to help patients make choices.

Service capacity

Much commendable effort, backed up by an increased annual investment of over £1.5 billion, has gone into increasing capacity within mental health services over the past seven years. The Department of Health points to an increase since 1999 of 1,300 consultant psychiatrists, 2,700 clinical psychologists and almost 10,000 mental health nurses. To this can be added hundreds of assertive outreach and home treatment/crisis resolution teams and early intervention services, alongside new prison in-reach workers, graduate primary care mental health workers, community development workers to engage black and minority ethnic communities…the list could go on.

While service provision remains patchy, some of this extra capacity has led directly to new choices for patients, such as home treatment rather than hospital admission or psychotherapy as an alternative to medication - the government’s recent announcement of an extra £170 million by 2010/11 to develop psychological therapy services is particularly welcome. However, despite these extra resources, there appears to be little or no spare capacity in the system to allow much expansion of choice. Local services continue to work under great pressure and heavy demand. Some psychiatric wards operate at over 100% occupancy. Not all community services, such as those for people with a dual diagnosis of mental health and substance misuse problems, are fully up to meeting current needs, let alone having the capacity to draw in patients who might choose them in preference to another service, or elect to come in from other areas.

Information

There is also evidence from surveys that patients may be offered little information about the likely effect of treatment or available choices. As noted above, some people with mental health needs may require more than usual support to make choices. This suggests the need for significant investment in ‘service navigators’, particularly for those whose first language is not English, and a willingness from GPs and mental health professionals to devote considerable time to supporting patients in making choices. In addition, a recovery centred approach to mental health care means that patients should be given information about the choices open to them to help them regain control over all aspects of their lives, including areas such as housing, social care, education and employment.

Health professionals’ attitudes to choice

Even assuming spare service capacity and accessible information, would that be enough to ensure a truly empowered mental health patient? I suggest another factor needs to be built into the equation - the attitude of health professionals towards choice.

90% of all mental health care is provided at primary care level, with GPs the main providers of treatment and gatekeepers to more specialist services. However, we know that some GPs feel they do not have the necessary training or skills to support patients presenting with often complex mental health needs and some are not always aware of what local alternatives to medication might be useful for dealing with mental health problems or do not have access to them.

There is also evidence that the wider choice agenda is not fully accepted at primary care level. A King’s Fund survey (Choice and Equity: Primary Care Trust survey, 2007) showed that the majority of primary care trusts, for a variety of reasons, are experiencing significant difficulty delivering equity of choice at the point of referral. The most commonly cited problem was engaging GPs with patient choice, sometimes because GPs were reported to be sceptical or hostile to the choice initiative. Echoing this, the Healthcare Commission’s most recent annual health check of PCT performance reported that 70% of PCTs had failed to meet the choice target set.

If some GPs’ attitude or lack of knowledge might prove a stumbling block to the implementation of choice in mental health, the same may be true of some specialist mental health staff. One service user interviewed for the 2003 King’s Fund inquiry into London’s mental health services suggested: “Yes, it’s supposed to be a patient-centred service, and it is actually a psychiatrist-centred service”. To help tackle this perception of a paternalistic mental health system, there have been suggestions that mental health professionals need training in offering patients supported choice.

It is little comfort that mental health patients in other countries face similar stumbling blocks. In 2006, the King’s Fund and the Sainsbury Centre for Mental Health undertook a selective overview of national strategies and policies on mental health in Australia, New Zealand, the United States of America and Canada. They found that while there was broad agreement that service users in those countries should have more and better informed choice, in practice this was not commonly available. This was ascribed broadly to limitations on available services and professionals’ reluctance to offer choices. In the USA, for example, limitations on the range of services available and the sheer complexity and lack of coordination between different statutory, voluntary and private sector agencies all led to significant problems for patients in making meaningful choices about their care.

Conclusions

Expanding the choices available to people with mental health needs, who have historically been among the most disempowered of patients, has to be the right course. However the choice reforms may need to produce demonstrable benefits, and quickly, to avoid the risk of a backlash. This could come from patients, who at the end of the day just want a good local service that meets their needs, and who become confused by a cornucopia of choice and information on offer. Or it could come from health professionals who may find the information requirements of choice an excessive burden, and feel that their professional judgement is too often being ignored.

The bottom line is that moving the reality for mental health patients from paternalism, through greater choice into genuine empowerment, as envisaged in the government’s rhetoric, requires three building blocks - greater service capacity, improved access to relevant information and, perhaps the biggest challenge, health professionals who are willing to see patients as equal partners in their care, and give up some of the authority that they have traditionally enjoyed.

Simon Lawton-Smith is senior Fellow in Mental Health at the King’s Fund