Joint Committee on the Draft Mental Incapacity Bill Written Evidence

99.Memorandum from the Afiya Trust (MIB 822)



  1.  The Afiya Trust is a national charity based in London. Formed in 1995 by the King's Fund as the Black Health Foundation, today the Afiya Trust is a home to projects that involve carers' support, provision of multi-lingual information for families of people living with cancer, community involvement, capacity building and mental health.

  2.  The Afiya Trust generates, supports and maintains national and local networks concerned with the promotion of Black and minority ethnic (BME) peoples health and community care equality issues.

  3.  The Afiya Trust co-ordinated this collaborative response to the proposed Mental Incapacity Bill. The organisations involved are listed in Appendix 1.


  4.  BME Communities are particularly vulnerable when it comes to the causes of mental incapacity. They are affected, for instance, by a higher rate of strokes and mental ill health. BME people with learning disabilities have been shown to face greater disadvantage and the BME population, like the rest of the population, is an ageing one.

  5.  In the process of consultation the views ranged from total opposition to the bill to broadly welcoming it, but with strong reservations. No respondent was in favour of the bill without modifications. The strongest opposition came from disability organisations, especially those that are run by people with learning disabilities. They feel the Bill gives too many rights to carers and takes away rights from disabled people.

  6.  There are a number of concerns about the interpretation and implementation of the Bill that arises from the experience of BME communities which is demonstrated by related research of how legislation works in practice. It is felt that some of these issues are best addressed within the Bill and not just left to codes of practice.


Was the consultation process preceding the publication of the draft Bill adequate and effective?

  7.  Organisations did not know about the Bill or any preceding consultation. There are no specific BME groups on the Decision Making Alliance. This Bill was not as well publicised in the media as the Mental Health Bill and therefore many interested organisations are unaware of it. Where organisations are now aware of it the time factor and resource limitations makes it difficult for them to consult with their constituents.

Are the objectives of the Bill clear and appropriate?

  8.  Supporting documentation, such as the summary and frequently asked questions on the Constitutional Affairs website, makes the objectives of the Bill clearer. However, the Bill itself is not as clear as it could be in what it intends.

Does the draft Bill meet these objectives adequately?

  9.  It is not felt that the Bill addresses these objectives adequately. Suggestions have been made to improve this. There are concerns from Black carer organisations that the Bill actually puts more pressure on carers as there are implications of added legal responsibilities placed on them. Advocacy and support for carers are both needed. The added cultural and language difficulties faced by BME carers when accessing information and support is a particular concern. This has been well documented.

Are proposals in the draft Bill workable and sufficient?

  10.  There are a number of areas that BME consultees would like to address.



  11.  This definition is acceptable.


  12.  Under 2 (1) (a)-(c) do all these conditions need to apply?

  13.  In 2 (1) (d) insert "in a language of his choice after `whether by talking'".

  14.  Under 2 (2) add "or makes a decision that is not in keeping with norms of broader society".

  15.  Who decides if the decision is just an unwise decision or there is incapacity? Functionality tests need to be appropriate and take into account cultural, religious and language issues and perspectives. This would ensure that people working within the Incapacity Act fulfilled their obligations under the race Relations Amendment Act.


  16.  This section is welcomed.


  17.  This section lacks any reference to a persons cultural or religious beliefs which we believe would be material in determining their best interests. We feel this should be a requirement of the Bill. Implementation of this section also needs to take into account communication difficulties and the need for support should include bilingual advocates.

  18.  Under 4 (2) (b) "the need to permit and encourage him to participate" is welcomed. However, how will this be enabled? Again we feel access to an independent advocate should be part of the Bill.

  19.  We presume that 4 (2) (d) (ii) "or interested in his welfare" includes appropriate agencies or advocates.


  20.  This section seems to give carers very wide powers. We are concerned about the statements "any" person and "any" form of care. Should this not be more clearly defined? We feel there should be a distinction made between families and friends and formal carers. For instance a parent of an adult with severe learning difficulties might be better placed to communicate with that person than new formal carers. This can happen when an adolescent moves from children to adult services. There should be something about who has general authority and to what extent. There should be a different section for formal/paid carers who might also be covered by employment law and other legislation such as the Care Standards Act.

  21.  There is concern that the Bill does not give enough support to caring carers. Carer organisations felt that carers would be making key decisions with legal implications and have no real protection. However, there is a danger that "abusing carers" might be able to get around the "best interests" section due to their knowledge of the person with mental incapacity. The general authority needs more checks and balances.


  22.  This is a positive clause. However what happens with fluctuating capacity? Clarity is needed about when this is applied.

  23.  How will people exercise this power, which can be wide ranging, and how will it be monitored to ensure powers are not being abused?


  24.  When more than one donee is appointed clarity is needed on what happens if there is a dispute between donees—do they have to go to the Court of Protection?


  25.  The person with mental incapacity needs access to independent advocacy and support. Access to independent advocacy is needed for the whole process but in particular in this section because of any difficulties which might occur with family relationships. It might be difficult for someone to revoke a lasting power especially if a donee is a family member.


  26.  Deputies need to be aware of relevant cultural and religious beliefs of the person with mental incapacity. This would fulfil obligations under the Race Relations Amendment Act. They may be required to be able to speak the relevant community language.


  27.  There are a number of points to be made under this provision:

    —  For BME communities independent advocates can enable people to record their wishes.

    —  The Bill makes no mention of people with different language needs.

    —  This provision should extend to people covered under the new Mental Health Act as long as they were not a risk to others.

    —  it is also strongly recommended that a section on advance directives is included where people can set out what they would like to happen as opposed to just a refusal of treatment.


  28.  We presume that the excluded decisions include decisions on termination of pregnancy.


  29.  The codes of practice all need to address language issues and how people can be supported to make advance decisions.


  30.  The definition of ill treatment should take into account cultural and religious issues.



  31.  Staffing should reflect BME communities. Staff need to understand and be trained to deal appropriately with the issues that affect Black and minority ethnic people with mental incapacity issues. This includes the Public Guardian and the Lord Chancellors visitors. They need to adhere to the Race Relations Amendment Act.

  32.  What will be the limits on court appointed deputies?

  33.  Power to call for reports 39 (5) ensure that cultural diversity is used in the interpretation of mental and ethical matters.


  34.  Part 3 (7) Add donor's partner to list.

Might lessons be learned from similar registration already implemented in Scotland or elsewhere?

  35.  There are some key differences between this Bill and the Adults with Incapacity Act in Scotland.

    —  Scotland has a list of principles but the Bill has a checklist, which is thought not to be as strong as principles.

    —  Scotland also has a number of checks and balances, including three monthly monitoring by local authorities and annual monitoring by the Mental Welfare Commission. In the proposed Bill the power to call for reports from local authorities and the Lord Chancellor's visitors does not cover regular monitoring.

    —  in Scotland the Court appoints guardians but does not make decisions itself on behalf of a person with incapacity.

    —  In Scotland medical practitioners carry out functional tests, and the codes of practice stress multidisciplinary assessment. We are not advocating that medical practitioners be specified as carrying out functionality tests, as evidence from mental health has demonstrated that they do not have the cultural understanding needed to appropriately interpret responses. However, Scotland are clearer on who will carry out functional tests.

  36.  Early feedback on the implementation of the Act has confirmed that BME communities are on the whole unaware of the Act and its implications.

  37.  The general consensus from mainstream health and disability organisations is that it has empowered carers, although there have been some legal challenges where solicitors are seeking extra powers under the Act for carers which are inappropriate to the level of decision making a person with incapacity can still make. This has been dealt with by the Sheriff's court.

Are there relevant issues not covered by the draft Bill that it should have addressed?

  38.  In summary there are four main areas that need to be addressed in the Bill. These are:

    —  Cultural and religious sensitivity.

    —  The need for advocacy and support, as there is a need to ensure that someone is involved in decision making even if they lack the capacity to make decisions.

    —  Protection for those with mental health issues.

    —  Facilities for language support.

In what other ways might the draft Bill be improved?

  39.  Other concerns include how will functional tests be carried out and will enough attention be paid to cultural, language and religious issues? Proper assessments are very important and experience has shown that BME people have been misdiagnosed. Will all practical steps be taken to enable someone to communicate? Although there is a recognition that people communicate differently this seems to be a very broad definition and the simple fact that someone might speak another language does not seem to be acknowledged. The need for advocacy support of some kind, not only for the person with incapacity but also their carers is important.

  40.  There is a concern that paid/professional carers will make decisions on where someone lives, their finances and welfare. Given the results of research and public enquiries on the existence of institutional Racism we find this quite disturbing. How will the Race Relations (Amendment) Act be taken into account?

  41.  BME communities are unlikely to be aware of the Bill and the consequent Act. Therefore it is important to target information towards these communities.

  42.  It would be useful to consult with BME organisations in the drafting of the Codes of Practice.

August 2003



  Those that attended the consultation meeting or responded by e-mail:

Dianne KingLambeth Social Services
Millie ReidGLAD
Mike TookMaking Decisions Alliance
Daniel MwambaAfiya Trust
Claire FelixRethink
Neema MandaliaAfiya Trust
Shahid SardarDiverse Mind
Peter BlackmanAfiya Trust
Suman FernandoPsychiatrist
Meena PatelAfiya Trust
Raymond LeungMinority Ethnic Learning Disability Initiative Limited
Mercy JeyasinghamKings Fund
Bakhtiar HomozSonghai
Richard KlamerTurning Point
Hellen MurshaliRefugees
Linda KerrEnable Scotland
Jan KilleenAlzheimer's Scotland
Heather AndersonScottish Human Services Trust

  Those invited to attend the meeting or to respond by e-mail but did not respond.
Frank KeatingSainsbury Centre Mental Health Foundation
Helen TomkysDOH
Kevin MantleDOH
Melba WilsonChair, Wandsworth Primary Care
Safron SimmondsTasha Foundation
James NazrooAfiya Trust trustee
Jazz BhogalAfiya Trust trustee
Lord Michael ChanChairman of Afiya Trust board of trustees
Lydia YeeAfiya Trust trustee
Tahera AanchawanAfiya Trust trustee
Yasmin GunaratnamAfiya Trust trustee
Denise FordeAfiya Trust
Zelalem KebedeAfiya Trust
Chinyere InyamaInyama Associates (solicitors)

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Prepared 28 November 2003