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

Issue date: 19 February 2003

A new NOP survey has revealed that the public does not know who would have the right to be consulted about decisions regarding their welfare, health or finances if they had an accident that leaves them unable to make decisions for themselves.

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 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.

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

Paul, the Manager of a residential care home for people with autism said:

" A man in his late 20's in our service was diagnosed with a hernia. The suggested treatment for this was surgery as otherwise his condition could be life threatening. The man refused to consent to surgery and was deemed to have the mental capacity to do so. The man then demonstrated he was not 'informed' i.e.: couldn't give account of what surgery, anesthesia or operations were. He eventually consented after 4 long drawn out years of a desensitization programme carried out by our staff (so he could let hospital staff near him to operate and care for him). The obstruction that caused the surgery to take so long was around consent issues. It was difficult to judge how much capacity to make decisions the man  had. It was also difficult for the surgeon who had limited experience of people with autism. It is clear that the delay caused a lot of pain and discomfort for the client and I wish that a third party could have given legal consent on the man's behalf. It is vital that we get proper legislation on mental capacity soon to avoid this kind of situation happening again."                                                          

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.

Press Contact:  Hetty Crist tel:  020 7903 3539, NAS Press Office tel: 020 7903 3593, Out of hours: 07787 124 792 


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Notes to Editors

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.

 Campaigns packs are available from

Case studies are available from Hetty Crist on tel: 020 7903 3539/ 07787 124 792, email:

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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?

  • 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?

  • 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%       

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The information on this page was provided by members of the Making Decisions Alliance. It was last updated on19 February 2003

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This website is run on behalf of the Making Decisions Alliance by the Mental Health Foundation / Foundation for People with Learning Disabilities, 9th Floor, Sea Containers House, 20 Upper Ground, London SE1 9QB. Tel: +44 (0)20 7803 1100. Press office tel: +44 (0)20 7803 1281. Email: Website:

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