Making Decisions Alliance extremely disappointed Mental Incapacity Bill is not in the Queen's Speech

The lack of legislation means there's still a gap in the law around those who find it difficult to make or communicate decisions - for example, people with dementia, people with learning disabilities, mental health problems, autism or severe head injuries. People will be left vulnerable and unsupported to make decisions for themselves. Carers will remain unsure of their rights to be consulted on the treatment the people they care for receive. The legislation would have assumed that individuals have the legal right to make decisions for themselves. 

Without legislation these individuals will have little or no control over issues such as the treatment they receive, how they spend their money and where and how they live. They will be unable to plan for the future by appointing specific people such as family members or carers to make day-to-day decisions on their behalf.

Steve Broach, co-chair of the Making Decisions Alliance, says:

'This is frustrating and extremely disappointing news. We have been campaigning for new legislation for more than 14 years and now millions of people who would have been granted more control over their lives by this Bill have been let down. The broad range of charities that support this Bill shows just how crucial it is and how many people it will affect. 

We hope that the Government decides to introduce the Bill this session, despite its omission from the Queen's speech.'

The lack of legislation means that no one is clear where they stand - individuals, carers and professionals, such as doctors or lawyers, who work with them. 

The MDA is a consortium of voluntary organisations that has campaigned for parliamentary time for the draft Mental Incapacity Bill. The Bill would benefit the lives of millions of people in England and Wales, including people with dementia, people with learning disabilities, mental health problems, autism, or severe head injuries.

Making Decisions Alliance case studies

Learning disability

Charles Polaine Leonard is a 21-year-old man who has a severe learning disability and complex health needs. 

Charles attended a specialist residential college in 2001, where he was making good progress and had an agreed health plan. Charles became ill and his mother Sue Polaine Leonard was concerned because changes had been made to his medical regime that had not been agreed by her. Sue complained to the college and wanted her son's medical regime changed back, but the medical staff would not change it. Charles was immediately suspended from the college pending an investigation. 

The fact that we have no mental capacity legislation meant that Sue had no right to be consulted before Charles' treatment was changed. If we had legislation Sue would not have had to see him suffer with pain, or to face the upheaval and difficulty of finding him somewhere else to live. 

Dementia 

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.'

Mental health

Karen Essien from Bradford knows that her capacity to make decisions fluctuates according to the state of her mental health.

'I'm not always in control,' she says, 'but I do like to have the choice about where I go when I need treatment, and I want to be seen by women only. I think it's important to have choices.'

Karen has set out a detailed "advance statement" covering her wishes for care and treatment - right down to which ward she wants to be on if she does have to go into hospital rather than receive care at home - and "the things I'd like considered, such as the fact that I'm a vegetarian and that I want to be reminded to clean my teeth regularly."

The bill will allow Karen to appoint someone to make decisions on her behalf when she lacks capacity. It will also ensure decisions are taken in her best interests. However although the people responsible for her care respect her advance statement, at the moment it is not legally binding.

Notes to editors

• 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 Incapacity Bill.
• Member organisations of the Making Decisions Alliance are: Action on Elder Abuse, Age Concern England, Alzheimer's Society, Caring Matters, The Centre for Policy on Ageing, The Down's Syndrome Association, Headway, Help the Aged, Leonard Cheshire, Mencap, The Mental Health Foundation, Mind, The National Autistic Society, Patient Concern, The Relatives and Residents Association, Respond, Rethink, Scope, Sense, The Stroke Association and Turning Point, United Response, Kent Autistic Trust, Counsel and Care, Addavoice and POPAN.