99.Memorandum from the Afiya Trust (MIB
BACKGROUND TO ORGANISATION CO-ORDINATING
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
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
doneesdo 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
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
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
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
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
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
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
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.
DRAFT MENTAL INCAPACITY BILL CONSULTATION
Those that attended the consultation meeting
or responded by e-mail:
|Dianne King||Lambeth Social Services
|Mike Took||Making Decisions Alliance
|Daniel Mwamba||Afiya Trust
|Neema Mandalia||Afiya Trust
|Shahid Sardar||Diverse Mind
|Peter Blackman||Afiya Trust
|Meena Patel||Afiya Trust
|Raymond Leung||Minority Ethnic Learning Disability Initiative Limited
|Mercy Jeyasingham||Kings Fund
|Richard Klamer||Turning Point
|Linda Kerr||Enable Scotland
|Jan Killeen||Alzheimer's Scotland
|Heather Anderson||Scottish Human Services Trust
Those invited to attend the meeting or to respond by e-mail
but did not respond.
|Frank Keating||Sainsbury Centre Mental Health Foundation
|Melba Wilson||Chair, Wandsworth Primary Care
|Safron Simmonds||Tasha Foundation
|James Nazroo||Afiya Trust trustee
|Jazz Bhogal||Afiya Trust trustee
|Lord Michael Chan||Chairman of Afiya Trust board of trustees
|Lydia Yee||Afiya Trust trustee
|Tahera Aanchawan||Afiya Trust trustee
|Yasmin Gunaratnam||Afiya Trust trustee
|Denise Forde||Afiya Trust
|Zelalem Kebede||Afiya Trust
|Chinyere Inyama||Inyama Associates (solicitors)