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Does the bill add up?

Posted: 15 July 2004 | Subscribe Online


Drafting legislation must be a demoralising task. You sweat for months to put together a bill to deal with a longstanding legal hole, and in response you get a roar of disapproval. You listen attentively and painstakingly draft a new bill taking account of the concerns. The response is another flood of criticism. The old truism that you can't please all the people all the time has never seemed more apt.

Such is the lot of the civil servants who have put together the Mental Capacity Bill, the second version of which was launched in June. The draft Mental Incapacity Bill, published almost exactly a year ago, was the result of a tortuous legislative process, starting with a six-year consultation on mental incapacity in 1989, followed by the green paper Who Decides? in 1997, and a policy statement, Making Decisions, in 1999. Now, 15 years on, there is a need for some sort of "closure" in the mental capacity field.

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Unfortunately, this is a particularly thorny piece of legislation to get right. First, a wide group of people are affected, from people who are incapacitated through illness or injury, to those who are born with limited capacity. As a result, the bill will directly affect people with dementia, mental illness, autism, learning difficulties, brain injuries and anyone else who is - temporarily or permanently - unable to make decisions for themselves, as well as their families and professionals involved with them.

Second, there are some very significant issues at stake. The bill will have a huge effect not only on day-to-day decisions about what to eat and when to have a shower, but also on decisions about medical treatment, living arrangements, finances - and even whether to refuse life-saving treatment. The furore about the issue of living wills testifies to the importance of getting this particular piece of legislation right ("Clash of wills", page 30, 24 June).

The criticism centred on the first bill was predominantly, but not exclusively, around the tone of the bill, which many argued was overly focused on legislating to enable families and professionals to make decisions for others, rather than on supporting and empowering individuals to decide for themselves. The government seems to have taken this criticism on board and the new bill is an altogether different animal.

The first major change is in the first clause, which sets out some general, and warmly welcomed, principles (see box). These principles - in particular the emphasis on a presumption of capacity - have dramatically changed the tone of the bill, to the delight of many observers. Yet there are still serious concerns.

One of the most contentious areas in the draft bill was the allocation of a "general authority". This had many people with learning difficulties in paroxysms of fury, as it could have allowed parents, carers or professionals to make unfettered decisions about the most important and intimate aspects of their lives. This general authority has been scrapped and replaced with what campaigners say is a rather vague clause which, in theory, limits their decisions to day-to-day issues. For bigger decisions, such as where to live or whether to have medical treatment, the bill proposes that someone would be granted power to make these decisions through a new "lasting power of attorney".

The Making Decisions Alliance (MDA), a coalition of nearly 40 organisations with an interest in the bill, is arguing that the new clauses are not sufficiently defined and need tightening to ensure that more significant decisions about health, finance and welfare are taken by the right people and have appropriate safeguards.

Another contentious area has been the bill's provision for people to make decisions in advance about whether to refuse medical treatment. This is one aspect that has been hugely controversial - not least because an advance refusal would potentially force families and professionals to withhold treatment that would prevent someone's death.

But this is about far more than someone being allowed to die. Toby Williamson is head of policy at the Mental Health Foundation, and co-chair of the MDA. He says that the right to set out an "advance decision" to refuse treatment is significant because many people with mental health problems would choose to refuse some forms of treatment in advance. He says: "This is a really important part of the bill, and we're delighted that the capacity bill looks likely to become law before any new mental health act.
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"There's a disjuncture at present because the capacity bill allows advance refusals, but these can be overridden by mental health law. A valid, legally enforceable advance refusal of treatment would mean that even if someone was very distressed, professionals would have to take their expressed wishes into account."

Williamson adds: "There's a rather silly anomaly between Scottish and English law - in Scotland, the advance statement is part of their mental health bill, rather than their capacity bill. In England, it is the other way round. So in Scotland you will have to have mental health problems to be able to make an advance statement - in England your advance statement can be overridden because you've got mental health problems!"

But probably the major gripe - and the one area that the new bill has made no headway on - is in the use of advocacy. Despite the commitment on the front of the bill that "all practicable steps" must be taken to help someone make a decision before they are deemed incapable, the new bill proposes a draconian limit on access to advocacy. An "independent consultee" - a new government term - should be made available to very vulnerable people who are facing "serious medical treatment" or who are facing significant changes in accommodation provided by the NHS or local authorities. But, crucially, these people will only be entitled to an independent consultee if they don't have any friends or family.

This has been roundly condemned by the MDA, learning difficulties organisations and others as short-sighted, miserly and counterproductive. Gavin Owen is policy and campaigns officer for adults at the National Autistic Society. He says: "It's very restrictive, especially when you consider that these support networks may often be where the conflict lies - or between the professionals and these networks. An advocate would take the principles of the bill and ensure that someone gets their wishes respected. We welcome the bill but we're pretty frustrated that such a large piece of the jigsaw has been left out."

One obvious reason for this oversight is the fact that the bill has no money attached to it. Widespread advocacy arrangements are likely to prove costly.

Ultimately the bill appears to be a vast improvement on both the draft version and on the existing piecemeal common-law arrangements. It still has to run the gauntlet of the parliamentary process and some of the sticking points may yet be ironed out with some concerted lobbying from the sector. But, as always, much of the devil lies in the detail and the codes of practice which will accompany the bill - and provide much of the practical detail - have yet to be published. The civil servants responsible are in for an interesting time.

- Making Decisions Alliance at www.makingdecisions.org.uk.  More on the Mental Capacity Bill at www.dca.gov.uk/capacity/index.htm

New Bill's principles

1 A person must be assumed to have capacity until established otherwise.

2 "All practicable steps" must be taken to help someone make a decision before deciding that they can't.

3 Making an unwise decision is not to be taken as evidence that someone lacks capacity.

4. All acts and decisions made for a person who lacks capacity must be in their best interests.

5. All acts and decisions should be the least restricitive alternative for that person's rights and freedoms.



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