The very legislation that promises a better deal for mental health service users is a mixed blessing
for their carers, writes Andrew Mickel
People with mental health problems and their carers should see their lot improve under new legislation. The Mental Health Act 2007, which comes into force on 3 November, maps out how carers will be better supported and more involved in planning. But there are fears that some of the measures may increase the burden on carers.
Initially, it looks promising: the act’s accompanying code of practice details how carers should be included in drawing up care plans for service users. The act will also make independent mental health advocates available, but not until next spring at the earliest. This is in addition to the extra money for respite care announced with the launch of the national carers strategy in June.
But an important change in the act could place a substantial burden of responsibility on carers. Supervised community treatment is intended to help revolving door patients stay out of hospital by requiring them to accept treatment in the community instead. The policy’s proponents claim this will allow recovery in a better environment. But potential problems have been flagged up at nearly every stage of their use.
The Princess Royal Trust for Carers is worried that, despite the code of practice, carers will not be as involved in the planning process as they should be.
Policy development officer Drew Lindon says: “What’s missing is a clear understanding by carers of when supervised community treatment is going to happen. Carers aren’t involved in the decision behind giving a community treatment order and don’t understand what support they can access.”
These problems are not new to Andrew Bailey, who chairs the Northamptonshire mental health carers reference group and cared for his son, who has schizophrenia, when he lived at home. “We have experiences of patients being discharged and turning up on carers’ doorsteps with no warning,” he says. “So there’s a legitimate concern with supervised community treatment that the patient will be dumped on the carer.”
This could put carers in the position of trying to care for a loved one while acting as their warden. Jane Harris, head of campaigns at mental health charity Rethink, says carers shouldn’t be put in such a position: “I don’t think carers have any real guidance about what to do if they’re with a service user who breaks a condition of their community treatment order (CTO). If they’re concerned that reporting a broken condition could mean the person they care for is taken to hospital, that seems completely unfair.”
Many of these issues were raised before CTOs were introduced in Scotland in 2005, but a King’s Fund report on their use in 2006 concluded they were generally successful. In New Zealand and Canada, where CTOs have been in place for several years, support from professionals has risen, suggesting they do work. However, the King’s Fund report said patients’ rights needed bolstering – so the delay in advocacy provision is unfortunate – and more resources were needed to support the use of CTOs.
This begs the question of what support is available for carers. The biggest problem is out-of-hours support. Bailey says: “My son is 6ft 5in and 18 stone. We’ve had damage to our house and garden because he just used to punch things to get rid of his anger. It’s no good the hospital providing a nine-to-five service – they have to provide a quick response, out-of-hours service.”
The extent of the need is likely to emerge as the real effects of CTOs are felt. But in a debate on the Mental Health Bill in 2006, Lord Warner estimated there would be between three and four thousand CTOs in the first five years. The resources needed to support that, as well as out-of-hours support (which will increase with the CTOs), will not come cheap.
One area that should improve for carers is confidentiality, which is flagged as a continuing problem area by Bailey, Lindon and Harris. Many professionals are not sharing information with carers and relatives for fear of breaching the law. Bailey says: “It’s easy for healthcare trusts to say to staff, ‘this is a bit of a scary area so don’t divulge anything and you won’t go wrong’. But if you send someone out [under a CTO] who is schizophrenic and not appropriately managed you are taking a risk with other people’s safety.”
The carers strategy recognised the problem, and set a long-term objective to legislate on improving the guidelines on what information can be shared.
Such moves show that the needs of carers are more recognised, but they do not reflect the whole picture. Take Nice’s draft guidelines on schizophrenia, released in September. Of 274 pages of text, there is just one on how to include carers in planning, and barely any mention of them beyond that. It proves that, although the increased references to carers in the act are welcome, there is a long way to go.
Lindon says: “We saw the act as a missed opportunity to increase carer support and put more legal onus on supporting carers. Mental health services are not very good at identifying carers, giving them their rights to an assessment and providing support.
“The problems of getting support for their own needs are just going to continue.”
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