Who has the right to decide for us if we can't decide for ourselves?

92% of people thought that a partner would have the legal right to be consulted about decisions on their behalf if they could not make decisions themselves due to a severe head injury from an accident. Yet in reality, there is no mental capacity legislation in England or Wales. This means that thousands of people who are unable to make decisions themselves are open to exploitation; and that professionals are open to accusations of malpractice because the law is unclear about what they are allowed to do.

The research was commissioned by the Making Decisions Alliance - a consortium of 20 voluntary organisations who want the Government to make parliamentary time for legislation which could benefit the lives of millions of people in England, Wales and N. Ireland. These include people with dementia, people with profound learning disabilities, mental health problems, autism, or severe head injuries. But the issue of mental capacity actually has wider implications for everyone in the country. 

Michaela Willmott, Chair of the Making Decisions Alliance said:

'This research shows that there is widespread public confusion about what the law says about mental capacity. Any one of us or a member of our families, could find ourselves in a situation where we need to make a serious decision about our lives or a loved one's welfare.

But currently, we have the extremely inequitable situation where individuals and carers in Scotland have clear rights but a gaping hole persists in the rest of the UK.'

In Scotland new laws were introduced in 2000 to protect people who cannot make decisions or need help to make decisions about their money, health and welfare. But in England, Northern Ireland and Wales the problem persists because we have no legal definition of 'capacity'.

Many organisations representing professionals, such as The Law Society, the British Medical Association (BMA) and the Royal College of Nursing (RCN), all agree that new legislation is needed to provide clear guidelines on who can make decisions and when.

Professionals are often unsure about what the law allows them to do to ensure the patient gets the necessary treatment. As a result, they are at risk of being accused of malpractice; while patients are vulnerable to abuse. New legislation will therefore not only protect people who may not have capacity, it will also help protect professionals in carrying out their duties and will have a major impact on carers' lives.

Vivienne Giles is the main carer for her mother, who has dementia with Lewy Bodies. Vivienne had many problems ensuring she was kept 'in the loop' concerning her mother's medical needs and felt that on several occasions important decisions regarding her Mother's care were withheld from her. 'There was also a big problem concerning my Mother's medication, I am the one who has to see that she takes her drugs, and it's almost impossible when I'm not informed about changes in dosage and information about when new prescriptions are issued,' said Vivienne. 'If we had mental capacity legislation, I would have a right to be consulted about my mother's care and would not have to see her suffer unnecessary pain.'

The Making Decisions Alliance believes we need legislation to:

• Define what mental capacity is
• Enable people to make as many of their own choices for as long as possible
• Make sure people have access to support to help them make and communicate their decisions
• Protect those people who cannot make their own decisions
• Allow people to make plans for the future and be able to choose one or more people to manage their medical/welfare and financial affairs when they are no longer able to do so.

The Making Decisions Alliance will be sending out campaigns packs to local groups around the country and urging them to support the campaign by writing to their MP asking them to press the matter with the Lord Chancellor, Lord Irvine of Lairg.

Notes for editors

NOP Survey Results

1,000 adults in the UK

Q1. If someone had an accident resulting in head injuries leaving them unable to make decisions for themselves, who out of the following, if anyone - do you think would have the right to make decisions on their behalf?

Answers

92% - partner, wife or husband
73% - another family member
57% - doctor
32% - friend
28% - solicitor
19 % - social services
1% - don't know
1% - none of these

Q.2

Still thinking about someone who has had an accident leaving them unable to make decisions for themselves, do you think that their next of kin should have the right to be involved in decisions on their behalf in each of the following circumstances?

Answers

Deciding where to live - 88%
Deciding how their money is spent - 83%
Deciding on any medical treatment - 90%
None of these - 3%
Don't know - 1%