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Charity alliance warns new Bill will be 'toothless' without advocates

Issue date: 18 June 2004

Millions of people with dementia, autism, a learning disability and mental health problems will be better off under the new Mental Capacity Bill, but the Bill will be 'toothless' unless it ensures the availability of advocates, a coalition of 39 charities has warned.

The Making Decisions Alliance (MDA) says the Mental Capacity Bill, due to be published today, has the potential to transform people's lives for the better, but this is at risk if the Government does not give more emphasis in the Bill to the role played by advocates.

Richard Kramer, co-chair of the MDA, said:

'We have been waiting for legislation for 15 years. But this Bill will not achieve its aim of enabling people to take more control of their lives if advocates are not given more of a central role in representing those affected.

'Advocacy is vital to ensuring that people have a say in the decisions that affect their lives, and their availability protects the rights of those who need support to make decisions.

'This Bill is an opportunity for the Government to commit resources and support to independent advocacy that have been absent from many previous initiatives, where independent advocates have received little more than kind words from Government.'

The Mental Capacity Bill will set out people's right to make their own decisions and there will be a presumption that people have the capacity to do so unless it is proved otherwise. The MDA believes this is vital for the millions of people who are currently, often wrongly, judged incapable of making decisions. It will also give those caring for these people more confidence in their rights to be consulted on the treatment and care that they receive.

Advocates help people to have a say in their own lives. Ideally they are independent, understand the abilities of the individual and are focused on that individual's needs.

The Bill is likely to only recognise the contribution of advocacy in limited cases, where people do not have any friends or family to help them make decisions.

The MDA is calling for advocacy to be made available in other circumstances in order to provide additional safeguards against abuse and exploitation when life-changing decisions need to be made - on topics such as invasive surgery, long-term treatment or where people live and to help resolve areas of dispute.

Richard Kramer said: 'Above all, advocacy can play a critical role in assisting people to make and communicate decisions and to help enforce their rights.'

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Case study: Why advocacy is essential to the Mental Capacity Bill

Millie, who in her 20s, has Down's syndrome. She was referred to an independent advocate after her parents announced they were going to separate. They were concerned about the impact that this would have on her. In particular they wanted Millie to be able to decide whom she wanted to live with after the separation because of her relationship with her parents they didn't feel they could do this without someone independent involved.

The advocate met with Millie at her home initially and then at her college, as this was where she preferred to meet. It took six months from the initial referral to when her mother and father actually separated. It became clear that Millie had difficulty deciding whom she would like to live with through verbal discussion.

Millie and the advocate tried different methods of discussing the decision. The advocate created a chart showing the days of the week, and Millie had several symbols representing her father, mother and grandparents, all people she could live with.

Millie appeared to understand this chart and filled it in, independently deciding which nights she would spend where and stating the reason why. Millie made up the chart consistently over the next couple of weeks. She was then happy for the advocate to present it to her parents and to explain how Millie had filled it in. They were both happy to implement the choices that Millie had made.

The advocate met with Millie for a couple of weeks after her parents separated to see if the arrangements she had chosen were working well for her. Millie said she felt happy with things.

The advocate then explained she would close Millie's case for now but if she needed further support she could ask her parents or key worker to contact the advocate or contact the advocate herself.

Case study: Why the Mental Capacity Bill is needed

Sheila Griffiths has Alzheimer's disease and is cared for at home by her husband David. Sheila is still able to make decisions for herself, but has difficulty communicating these decisions as Alzheimer's disease affects her speech. She knows what she wants to say, but she can't find the words.

Sheila and David have planned for the future as much as is currently legally possible. David has an enduring power of attorney for Sheila to make financial decisions on her behalf and both have living wills. However David is worried that without the protection of mental incapacity legislation he will have no legal right to make decisions about where Sheila lives or what health care she receives when she is no longer able to do so.

'I know what she wants and what her views would be. We discussed earlier what she wants. I wouldn't like to think that her wishes about health care and where she wants to live won't be considered in the future. I worry about who will look after her in the future if I'm not around.'

Most of the health and social care professionals, David and Sheila have come across since Sheila was diagnosed have been supportive, however they have had two bad experiences, with a dentist and an optician. 'They stopped considering her as a person when they heard she had Alzheimer's,' explains David. 'If I hadn't been there she would have been trampled all over.'


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Notes to Editors

1. Member organisations of the Making Decisions Alliance are: Action on Elder Abuse, Addavoice, Age Concern England, Alzheimer's Concern Ealing, Alzheimer's Society, Beth Johnson Foundation, Carers UK, Cloverleaf Advocacy, Consumer Forum, Counsel and Care, Centre Policy on Ageing, The Down's Syndrome Association, Friends of the Elderly, Foundation for People with Learning Disabilities, Help The Aged, Horsham Gateway Club, Kent Autistic Trust, Leonard Cheshire, Manic Depression Fellowship, Mencap, The Mental Health Foundation, Mind, Motor Neurone Disease Association, North Staffordshire Users Group, The National Autistic Society, Parents Autism Campaign for Education, Patient Concern, POPAN, The Oaklea Trust, The Relatives and Residents Association, Respond, Rethink, Scope, Sense, Skills for People, The Stroke Association, St Clements Patients Council, Turning Point, United Response.

2. Many organisations representing professionals, such as the Law Society, the British Medical Association and the Royal College of Nursing, have also called for the introduction of the Mental Capacity Bill.

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The information on this page was provided by members of the Making Decisions Alliance. It was last updated on18 June 2004.

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