Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence



    —  Add a Voice

    —  Action on Elder Abuse

    —  Age Concern England

    —  Alzheimer's Society

    —  Beth Johnson Foundation

    —  Carers UK

    —  Caring Matters (until 25 July 2003)

    —  Counsel and Care

    —  Down's Syndrome Association

    —  Headway

    —  Help the Aged

    —  Kent Autistic Trust

    —  Leonard Cheshire

    —  MIND

    —  Manic Depression Fellowship

    —  Mencap

    —  Mental Health Foundation

    —  National Autistic Society

    —  Patient Concern

    —  POPAN (Prevention of Professional Abuse Network)

    —  The Relatives & Residents Association

    —  RESPOND

    —  Rethink

    —  SCOPE

    —  Sense (The National Deafblind & Rubella Assoc)

    —  The Stroke Association

    —  Turning Point

    —  United Response



  Successive Governments have highlighted the importance of independent advocacy and showed an appreciation of the valuable role it can play in supporting people to access vital services and ensure their rights are protected. For example, the Disabled Persons Act 1986 charged local authorities with setting up a formal system of authorised representatives who could make representations about their disabled people's need for services, get a statement of assessed needs and services to be provided and make representations about this. However, this formal system was never implemented.

  6.2.1  More recently, the Health and Social Care Act 2001 (part 1, section 12, clause 19A) empowers the Secretary of State "to arrange, to such extent as he considers necessary to meet all reasonable requirements, for the provision of independent advocacy services". This Act also introduced two new mechanisms to deal with health service complaints, PALS and ICAS. A similar clause exists in the draft Mental Health Act in relation to the help to be available from mental health advocates to qualifying patients and to their nominated persons.

  6.2.2  In addition, numerous white papers, standards, guidance documents and reports from different Government Departments have drawn attention to the benefits advocacy can bring and emphasised the need for further development and support for such services. However, apart from the limited funding announced in the White Paper Valuing People for services aimed at people with learning disabilities over the next three years, there has been no indication of any national Government funding or resources for independent advocacy services.


  Citizen Advocacy is a one-to-one ongoing partnership between a trained volunteer advocate and a person who is not in a strong position to exercise or defend their rights and is at risk of being mistreated or excluded.

  Peer Advocacy is where one person advocates for another who has experience or is experiencing similar difficulties or who has similar life experiences (eg service users in a residential facility).

  Professional Advocacy is where people are employed and paid within an advocacy service. This usually follows a case-work model, focussing on particular issues.

  6.2.4  If someone already has a Citizen Advocate they know and trust, they should be able to use this support in this situation if they so wish and if the advocate is willing to do so rather than be required to use a paid professional advocate. Similarly, if someone wanted to have a Citizens Advocate but there are no such schemes in their area but paid professional advocates were available it would be reasonable for them to accept this as an alternative.



  A man in his mid-60s has a previous history of long-term institutional admission from his 20s to late 40s. During a hospital admission a neighbour was very active in arguing for him during discharge planning and agreed to provide regular weekly support. At the meeting the gentleman did not challenge this but was still very anxious about going home. It later emerged that the neighbour had encouraged him to sell his family home to move into a bungalow near her so she could "provide support". In return, he had invested in an extension for her property.

  6.2.6  As time went on, the promised support from the neighbour never emerged. He had been unhappy with the discharge planning at the time, but had never felt comfortable saying anything in front of his neighbour. He didn't want to upset her, as he was still hopeful that she would provide ongoing care. Due to his history of institutionalisation, he was continually scared of getting into trouble for whistle-blowing. Everyone assumed that the neighbour was advocating for him; nobody realised the neighbour wasn't independent. Nobody actually asked the gentleman independently whether he was happy with the arrangements that had been made. An independent advocate would have asked all those important questions.

6.2.7  CASE STUDY 2

  The following case study is an example of how someone's condition and their life experience to date have both had an impact on their ability to make decisions.  A young woman with Asperger syndrome had many different placements throughout her school life and early adulthood. Her ability to make decisions was affected by these changes in surroundings. She felt was unable to control major decisions in her life, such as her placements, and, because the settings were not appropriate, her reliance on her obsessions (personal hygiene and domestic cleanliness) became more acute. The reassurance she found in her cleaning adversely affected all the other decisions she made—cleanliness was the only thing that mattered to her. As she became more settled in a more suitable supported living arrangement, her obsessions declined and she was able to engage in other activities—college, gym etc.


  A non-verbal man with autism attended an autism specific day service in a neighbouring local authority. It had always been assumed that because of his lack of language and his apparent indifference to his surroundings that he was incapable of making certain decisions. When his local authority decided that it would be cheaper for him to attend one of their own generic day centres for disabled people the day centre appointed an advocate. It soon became clear to everyone involved that he had understood what was happening and wanted to stay at his present day service. Through specific questions and his use of symbols the advocate was able to ask him about his current day service and how it helped him.


  A man who suffered a mental breakdown at university is now paranoid about his immediate family, who are doing their best to help him. However, he sees any support they suggest as oppressive and detrimental to his interests. He is very intelligent and can communicate well, but his views are distorted through his delusional beliefs. An independent advocate is needed to help him express his preferences to enable decisions to be made in his best interests.


  A young man with autism and very little language needed a hernia operation and was in a great deal of pain. Because of his autism he hadn't alerted anybody to the pain he was suffering. Staff began to notice his discomfort and he went to a doctor. He lived in an autism specific residential service and the staff, his parents, his psychologist and surgeon agreed he needed the operation. However without the use of an advocate it was agreed that consent could not be assumed. The advocate was able to explain impartially the consequences of an operation. Following access to an advocate he gave consent and the operation was successful.


  A lady in her mid 90s was living alone in warden accommodation. She was physically ill but refused on several occasions to go into hospital. It was unknown how serious her illness was due to lack of tests (which could only be done in the hospital)—it may have been a minor blockage that could be easily rectified, but it could also have been something much more sinister. Due to past history the lady was adamant she did not want to leave her home as she was very clear that she wanted to die in her own home. She was aware that she may be shortening her life by this decision but for her the potential benefits of a move into hospital did not outweigh the fear of going there. The GP became very anxious about this and instigated a Mental Health Act assessment, the GP tried to argue there were questions over the lady's capacity but it seemed much more to be a case of "covering the back" by the GP.  The lady was very traumatised by the experience of many strangers entering her home and asking very personal questions. There needed to be someone in this process very clearly advocating for her wishes to stay at home, as her wishes seemed to be totally lost in this process. The concern would be that a GP under the new system would act under the General Authority and remove her into hospital, as the lady herself could express her wishes if given the time and space and when asked appropriately but was too weak to really challenge anyone. An advocate would have clearly been able to challenge the GP's concerns and any "medical" decisions that he made.


  A man's health was deteriorating; and his insight and ability to communicate were severely diminished. There was an on-going dispute between his sister and father and his wife when he became ill, which resulted in a long battle to register an EPA. The family said they were quite happy for his wife to handle all financial and business matters with the EPA not being registered. However, the family then started to take him to meet with solicitors and clerks, seeking revocation of the EPA when he visited them, causing much friction. An independent advocate may have helped to establish and communicate his views.

6.2.13  FREQUENTLY ASKED QUESTIONS ON ADVOCACY  Q. How can you advocate for someone whose views on the particular issue can't be established?

  A. You can build up a picture of a person's views and preferences from their behaviours and the way they react to different things. From that, it is possible to work out what they may prefer to happen and what makes them happy. It is however very important for advocates to make it clear when it is not possible to ascertain someone's wishes and feelings.  Q. HOW CAN YOU GET THE VIEWS OF PREFERENCES OF PEOPLE WHO ARE MENTALLY INCAPABLE?

  A. Mental capacity isn't a black and white issue. Someone may be capable of making some decisions and not others, or may not be capable of making many decisions but could be able to express views or preferences that can help guide the actions of the substitute decision-maker. An independent advocate can help explain to someone in a way they are more likely to understand what the decision is about so that as far as possible their views are considered.  Q. HOW WOULD YOU ENSURE ADVOCATE IS INDEPENDENT AND ACCOUNTABLE?

  A. The independence of the advocate is important to the success of the advocacy. Work needs to be done by organisations providing advocacy to establish how advocates can guarantee independence and accountability for the individual. But we need to make sure that the possibility of informal advocacy is not removed through any formal process of ensuring independence and accountability.  Q. WHO SHOULD BE RESPONSIBLE FOR PROVIDING AND / OR RESOURCING THIS ADVOCACY INPUT?

  A. Central Government should fund the provision of independent advocacy support needed to make the commitment in the Bill to a presumption of capacity a reality.  Q. HOW MUCH WOULD THIS COST?

  A. No accurate figures are available. However, the MDA believes that every local authority area should have an independent advocacy service that is able to support people who are affected by the Bill. For some areas, this will be new provision. For others, existing services would need to be enhanced. It should also be borne in mind, however, that many of recommendations are about providing access to advocacy for those who do not have alternatives. Most people will probably continue to use informal advocates (family, friends, and neighbours) with no substantial cost implications.



  Mental capacity legislation has been the subject of debate and legislative change around the world over the past 20 years. Many countries have made changes to their laws to ensure that they deliver the necessary safeguards for citizens who lack capacity to consent. An ageing population, advances in medical technology enabling people with severe disabilities to live longer, and the move from institutionalisation to community-based living, were cited as the main reasons for reform. These are all issues that are relevant to England, Wales and Northern Ireland.

  This paper examines mental capacity legislation in Scotland, Australia and Canada.


The Adults with Incapacity (Scotland) Act 2000

  In March 2000, the Scottish Parliament passed this act, recognising that the existing law was failing to meet the needs of adults unable to make decisions for themselves. The Scottish Law Commission produced a report in 1995 on the subject and, after extensive consultation, the Adults with Incapacity Act was passed in May 2000. Mental capacity legislation takes a functional approach to determining capacity. So, the act makes an assumption that individuals will be able to make their own decision unless it is proved that they are unable to do so. The act states clearly that interventions in the affairs of adults who lack capacity must be in the best interests of that adult; and that the guardian (a spouse, nearest relative, and so on) has a General Authority to act reasonably on day-to-day decisions. The Act creates a new offence for an appointed guardian neglecting his/her duties or failing to act for the benefit of the person who lacks capacity to consent. Under the Act, several agencies supervise those who take decisions on behalf of the adult, ensuring those decisions are in the person's best interests. These agencies include:

    —  the Public Guardian, which has a supervisory role and keeps registers of attorneys, people who can access an adult's funds, guardians and intervention orders;

    —  local authorities, which can look after the welfare of adults who lack capacity in instances where no guardian can be found (other local authority roles under the Act include investigating circumstances where the personal welfare of an adult is at risk, providing information and advice to those exercising welfare powers and supervising attorneys and guardians); and

    —  the Mental Welfare Commission, which protects the interests of adults who lack capacity as a result of mental disorder. Under the Act, the main ways that other people can make decisions for an adult who lacks capacity are as follows:

    —  Power of Attorney

  Individuals can arrange for their welfare to be safeguarded and their affairs to be managed properly. They can do this by giving another person (who could be a relative, carer, professional person or trusted friend) power of attorney to look after some or all of their property and financial affairs and/or to make specified decisions about their personal welfare, including medical treatment.

    —  Intervention and guardianship orders

  Individuals can apply to their local sheriff court for an intervention order where a one-off decision or short-term help is required, or a guardianship order, which may be more appropriate in cases where there is a need for the continuous management of affairs or the safeguarding of welfare. Any person claiming an interest in the adult's affairs, or a local authority may make applications for intervention and guardianship orders.

    —  Medical treatment and research

  The act allows treatment to be given to safeguard or promote the physical or mental health of an adult unable to consent. Where there is disagreement a second medical opinion can be sought. Medical practitioners have to consult close relatives before administering medical treatment. Cases can also be referred to the Court of Session in certain circumstances. The act also permits research involving an adult incapable of giving consent, but only under strict guidelines.

    —  Access to the adult's funds

  Individuals (normally relatives or carers) can apply to the Public Guardian to gain access to the funds. Authorised housing and care services can also manage a limited amount of the funds and property of residents.


  All the Australian States introduced mental capacity legislation between the late 1980s and 1990s. The principal model is the Guardianship and Administration Board Act 1986, in Victoria (recently amended in 1999). Legislation covering different states takes the functional approach to determining capacity. This paper examines South Australia's Guardianship and Administration Act 1993 as an example of the approach used by other states.  The Guardianship and Administration Act 1993—South Australia

  The Guardianship and Administration Act 1993 came into operation in 1995. This set the Guardianship Board, which is responsible for applying the new law, the task of setting out a number of orders. It is assumed that close relatives will make day-to-day decisions, but the Act encourages those who may lack capacity in the future to appoint a guardian. However, guardians can only make welfare and medical decisions on someone's behalf. The act creates a new offence for an appointed guardian neglecting his/her duties or failing to act for the benefit of the person who lacks capacity to consent.  Administration Orders

  In terms of welfare and financial affairs, the Guardianship Board may appoint an administrator to look after such affairs. The following can be appointed to act as an administrator:

    —  The Public Trustee.

    —  A trustee company under the Trustee Companies Act 1988.

    —  A relative appointed by the Board.  Medical decisions

  There are two laws that deal with the issue of who has the legal authority to consent to medical and dental treatment:

    —  Consent to Medical Treatment and Palliative Care Act 1995.

    —  Guardianship and Administration Act 1993. If a person has not appointed a "Medical Agent", or has not made an "Anticipatory Direction" (a living will) under the Consent to Medical Treatment and Palliative Care Act 1995, and mental capacity is lost, then consent to medical or dental treatment for a person with a mental incapacity must be sought from the following:

    (a)  the guardian appointed by a person, prior to mental incapacity, to make medical decisions;

    (b)  the guardian appointed by the Guardianship Board under a Guardianship Order. The written order will specify the areas in which the guardian is empowered to make decisions;

    (c)  where there is no guardian or enduring guardian, specified relatives can give consent, including a spouse, a parent, a sister or brother aged 18 years or older, a daughter or son of aged 18 years or older. In terms of prescribed treatment such as an operation, where a person is unable to give their consent, the Guardianship Board is the only authority that can give consent. The Guardianship Board is governed by a set of criteria when making decisions about such a treatment or procedure.

  6.3.2 6 The Office of the Public Advocate has also been set up as a "watchdog" with the responsibility of educating the public on issues relating to disability and promoting the interests of people who lack capacity to consent, and in some instances, their carers.

6.3.3  CANADA

Adult guardianship legislation

  The situation in Canada is similar to Australia's in the way that each province has its own legislation. Until recently, mental capacity legislation varied considerably from province to province. There were two main approaches adopted. The traditional system regarded incompetence as absolute (eg Ontario's Mental Incompetence Act 1980). This means that legal rights, possessions and decision-making power of the person lacking capacity to consent are transferred to another once the court makes a decision that the person lacks the capacity to consent. This approach was heavily criticised by disability organisations as being paternalistic and open to abuse. Major reform took place in the early 1990's (see Ontario case study). The second approach, adopted in Alberta (the Dependent Adults Act 1976), was one of the earliest attempts to adopt a more functional approach to mental capacity.  Ontario—towards reform

  In 1992, Ontario abolished its mental incompetence guardianship regime and enacted three new legislations: the Consent to Treatment Act 1992, the Advocacy Act 1992[2] and the Substitute Decision Act 1992. This legal reform promoted the autonomy of those who lack capacity to consent, and prevented unnecessary legal intervention in their lives. The Act states clearly that interventions in the affairs of adults who lack capacity must be in their best interests. People will be presumed to be able to make their own decisions, unless it is proved otherwise. In all the areas of decision-making, the Act makes clear the need to encourage the individual to participate as fully as possible in any decision affecting him/her. The appointed guardian has a General Authority to act reasonably. As with the legislation in Scotland and Australia described above, the act creates a new offence for an appointed guardian neglecting his/her duties or failing to act for the benefit of the person who lacks capacity to consent. Individuals can arrange for their welfare to be safeguarded and their affairs to be managed properly, by giving another person (who could be a relative, carer, professional person or trusted friend) power of attorney. These include decisions about their property and financial affairs and/or to make specified decisions about their personal welfare, including medical treatment. Finally, the Health Care Consent Act has created a simple procedure that recognises the social position of family members as natural substitute decision-makers. It provides the legal framework for carers to appeal against medical decisions. It should be noted, however, that if the patient has granted the power of attorney for personal care or if a guardian has been appointed, then the attorney becomes the substitute decision-maker and other family members lose their automatic status. Ontario's legislation has also established the Office of the Public Guardian and Trustee to provide a number of services. Some of these include:

    —  Property Guardianship

  This service manages the financial affairs of individuals who lack capacity to consent, when there is no one else who is able, willing and appropriate to provide this service for them. The office may be appointed as guardian of property by a doctor in a psychiatric facility, a designated capacity assessor, or the court.

    —  Personal Care Guardianship

  The Personal Care Guardianship is occasionally appointed as guardian of the person to make personal care decisions for a mentally incapable adult, if this is necessary to protect the person from serious personal harm. Only a court can make these appointments. As guardian of the person, it is the office's responsibility to make decisions about things like custody, safety and housing.

    —  Decisions about Treatment and Admission to long-term care

  This service is responsible for making decisions about medical treatment and admission to long-term care for those who are mentally incapable of doing so when there is no one else, such as a family member, willing and able to provide this service.

2   In 1996, the Advocacy Act was repealed and the Consent to Treatment Act was replaced by the Health Care Consent Act. This was done under the Advocacy, Consent and Substitute Decision Statute Law Amendment Act 1996. Back

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