Joint Committee on the Draft Mental Health Bill

Joint Committee on the Draft Mental Health Bill Written Evidence

DMH 267 Memorandum from Association for Mental Health Advocates

1. Introduction

AMHA is the new Association for Mental Health Advocates. AMHA's vision is for a world where the voices of people who use mental health services are heard loud and clear by mental health and other services. AMHA'S mission is to empower mental health advocates to work effectively with people who use mental health services to get their voices heard in the way they wish to be heard. AMHA aims to promote diversity and quality in mental health advocacy and to provide a national voice for mental health advocates. AMHA was formed in February 2004 and currently has a hundred and fifty members from England, Wales and Northern Ireland. 50% of AMHA members have direct experience of using mental health services.

AMHA estimates that there are in the region of 2000 people working as Mental Health Advocates in the U.K. AMHA's members will be responsible for delivering IMHAA and AMHA is expecting to play a central role in the implementation process. AMHA members were consulted on this submission and came together to debate the proposals at a national seminar in October.

1.2 Summary

AMHA supports the principles behind the Government's proposal to introduce independent advocacy for people subject to compulsory treatment. However, the provisions fall short of providing the individual with a legally enforceable right to an advocate. AMHA considers an enforceable right is essential because access to advocacy at all stages has a crucial role to play in safeguarding the rights of people subject to the new regime.

In relation to the use of compulsory powers AMHA believes that an individual right to independent advocacy is vital for people who are:

liable to compulsory treatment
at the point of 'examination' for assessment
assessment
during periods of compulsory treatment and
under aftercare arrangements

However, AMHA believes that a right to advocacy should be introduced for people who use mental health services across the board. In this regard we would draw the Committee's attention to the Mental Health (Care & Treatment) (Scotland) Act 2003 which puts a duty on authorities to ensure that independent advocacy is available to all people with a 'mental disorder' and that they have an opportunity to use it. Whilst this does not meet the standard for an individually enforceable right, it is, in our opinion, preferable to the proposals presently under consideration for England and Wales.

2. Responses to government proposals

2.1 Functions

AMHA believes that advocacy is effective in terms of reducing distress and in reducing the use of clinical services. Our experience shows that early and on-going support from advocates reduces the need for admission to hospital and involvement with other agencies such as the courts and homelessness services.

Advocates can help by limiting the escalation of financial, housing, personal, and medication problems. Advocacy also enhances communications between patients and medical and social care practitioners. This is why we strongly urge the government to reconsider both the point at which patients should be entitled to access advocacy services (2.3 below) and the range of people with this entitlement. We agree that "The advocate can play an important role in

using their expertise to communicate with professionals on behalf of the patient

and helping the patient to exercise their rights." And that advocates will "support patients in understanding their rights under the Bill and exercising those rights, which will include challenging treatment under formal powers where the patient believes that they have wrongly been brought under compulsion."

We support the outline of the functions of AMHA Advocates outlined in clause 247(3)(a)(i-v). We would stress that the key to the role of the IMHA Advocate is contained in the phrases "help in obtaining information about and understanding" (247(3)(a)) and "Help (by way of representation or otherwise) in exercising those rights" (247(3)(b)).

We support the central role of providing assistance to qualifying patients in obtaining information but this function needs to be fully described in accompanying guidance - it is vital that the relevant authorities duty to provide information is not avoided through a mistaken emphasis on these provisions. It is also vital that IMHA Advocacy support is not defined solely as representative as the key principle of advocacy is that it promotes self advocacy ie it provides support to the qualifying patient to get their voice heard, in the way that they wish to be heard.

The specific functions of IMHA Advocates should be decided as part of the DH's proposed stakeholder group and detailed guidance developed in the code of practice.

2.2 Access to records

In general we support the Governments desire to accelerate access to mental health records (clause 247(4)(b) and 247(5)) as scrutiny by the individual of their records can help to ensure that appropriate and effective treatments are put into place.

However, we believe that this would be better achieved by fast-tracking the right of access to records for patients themselves, with the assistance of advocates if they so wish. This access should include social work and nursing records as well as clinical notes.

Giving direct access to advocates, even having 'regard for the wishes and feelings of the patient' is open to abuse and works against the principle of self-advocacy and autonomy.

Where a person lacks the capacity to decide whether or not they wish themselves or their authorized advocate to have access to their records the nominated person should be given the right of access. However, it may be appropriate, in some circumstances, for there to be a duty on the hospital authorities to ensure that key information is communicated to the advocate, for instance in situations listed in 2.4 and 2.12 below.

We recommend that the proposal to provide IMHA Advocates with access to records without the patient's informed consent should be scrapped and, for people whose decision-making in this regard is impaired, that the Nominated Person be given this right.

2.3 Point of access/qualifying patients

The Bill proposes that patients should only become entitled to information about their right to access advocacy services after the initial examination has taken place and only once a formal decision that a patient is liable for an assessment under part 2. The examination process can take place in a variety of different settings: a place of safety ie a hospital or police station, or at the patient's residence. The examination can take place over a period of 120 hours. We have considered the response expressed in the Guidance document. Whilst the response acknowledges that the information about advocacy services not being made available during the examination stage was the main criticism of the advocacy sections of the first draft, it does not then address the problem. It may be that there has been some confusion about the precise nature of the criticism so we are here attempting to clarify exactly what we want to see in the new legislation. For the avoidance of doubt, we are not suggesting that the IMHAAs should arrive alongside the professionals who will carry out the examination. We fully understand and support those who say that for advocates to be involved in the process in this manner would confuse their role with the "detaining process" itself. We are not asking for this.

We are asking for people undergoing the examination process to be given the information, and the opportunity to contact a mental health advocate if they choose to. We understand in extreme emergencies it may not be possible to impart this information in a meaningful way and that occasionally some patients may not be well enough to make use of the information and/or take the opportunity to contact the advocacy service. However, this is also true of some patients when a decision has been taken to undertake the assessment stage. Notwithstanding the condition of the patient, AMHPs are still under a duty to explain the help available from IMHAAs at this point.

Without information about IMHAA being given during the examination the patient will be completely isolated in the hands of the examiners. At this time the nominated person will not have been appointed. Hence for 5 days a patient can be detained, examined and compulsorily administered treatment if the professionals consider it urgent to do so, with no safeguard in place. No right to access advocacy services and no involvement by the nominated person.

The initial care plan must be drawn up over the first 5 days of detention for assessment. This will allow treatment to be administered without the patient's consent. Delaying giving information about advocacy will inevitably delay meaningful input into this critically important document if the examination results in admission for assessment.

We cannot see how information about IMHAA being given at the earliest reasonable opportunity will confuse the detaining/compulsory role, or in any way impede the examination. Providing the opportunity to make contact with advocacy services at this stage will safeguard the patient's rights, assist communication with clinical and care staff at the earliest opportunity, give advocacy services time to ensure patients are seen by advocates sooner rather than later, and may reassure patients at a most distressing time for them. It will also mean advocates can assist in ascertaining who the patient most wants to act as nominated person, and in put into the initial care plan from the outset.

AMHA believes that the Bill should provide the right to access specialist mental health advocacy at a reasonable point within the 120 hour limit of the examination process. In any meeting or negotiation with clinical or social care staff, a patient should have the right to be supported and (at the patient's request) represented by an independent mental health advocate of his or her choice, in the following circumstances:

when s/he is receiving in-patient treatment for mental disorder

when s/he is receiving care and treatment in the community, whether informally or subject to a care and treatment order or a supervision order.

2.4 Information about advocacy

Other times when people should be informed about advocacy include:

on admission to hospital
whenever special treatments are considered (including electro convulsive therapy (ECT), psychosurgery and the implantation of hormones to reduce sex drive)
on review of care or treatment
at discharge or transfer from hospital or release from compulsion
any other significant decision is being made
when a person is in seclusion
when the patient has strong objections to a proposed course of action

Information about independent advocacy organisations must be communicated to people in a way which they can understand and that takes account of any special communication needs they have. This will mean having in mind the needs of people with a visual or auditory impairment, and/or people for whom English is not a first language. In addition, all communication should be written in clear and easily understood language. While it is essential to leave the person with a permanent record of advocacy information, just handing over a leaflet will not be sufficient. Information about advocacy should be displayed in public areas and on wards as well as in a wide range of accessible formats.

2.5 Nominated person

The provision of advocacy to both patients and their nominated persons may cause conflicts of interest. The proposed number of advocates will not allow for separate advocates for each. Conflicts may arise where the patient is broadly happy for the nominated person to pursue their role, but where there is a key point of disagreement the advocate is supposed to continue unless advised by the appointer. The proposals don't reflect the primacy of the wishes/ needs of the qualifying patient. Ultimately, the point of IMHAA is to act as a patient safeguard. It is not primarily intended to provide support to other safeguarding roles. This should be more accurately reflected in the legislation so that in the event of conflict between the patient and the nominated person, the patient is not left feeling coerced into putting up with a nominated person they are unhappy with for fear of losing their advocacy support. Unless the patient is clear that in the event of conflict it is the patient's entitlement to advocacy which will remain intact, the safeguarding effect of both nominated persons and IMHAAs will be reduced.

2.6 Right to meet

We support the proposal to enshrine the right of patients to meet with their authorised advocate. However we are concerned that the right to meet in private, proposed in the 2002 Bill, has been removed. We would draw the committee's attention to the clauses of the new Bill dealing with the rights of Healthcare Commissioners, in particular Clause 270(3)(a) which enshrines a right to visit, interview or examine in private and & 270(3)(b) which requires that commissioners be afforded "such facilities and assistance…as are necessary to enable him to exercise his powers".

We recommend that the right to meet in private is reinstated.

2.7 Regulation

We support the governments proposals to arrange for the regulation of IMHA Advocates as clearly anyone undertaking statutory duties must be properly trained and accredited.

There should be a new agency tasked with overseeing quality measures, ensuring effective scrutiny and overseeing standards setting in mental health advocacy and this should be independent but governed by statute and accountable to government. This is already happening in Scotland in the form of the Advocacy Safeguards Agency. Any such new agency must ensure that people who use services and advocacy workers themselves are involved in developing standards. It is especially important that people with experience of using mental health services are included as a central part of the new organisation.

AMHA supports the model of advocacy service proposed by Durham University that IMHA Advocacy should be embedded in existing Mental Health Advocacy Services and should be run according to professional voluntary sector standards.

We do not believe that responsibility for the giving of advice to the appropriate authority on standards for the appointment, training and monitoring of advocates should be given to the Healthcare Commission.

A code of practice and training standards for IMHA Advocacy should be developed in consultation with people who use mental health services and advocacy workers.

We propose the formation of a dedicated Advocacy Standards Agency.

2.8 Independence

AMHA supports the government's commitment to the independence of advocacy from services responsible for care and treatment. In addition AMHA believes that independent advocacy has a key role to play as an agent for change and in supporting continuous improvement in mental health services generally. Many advocacy organisations are already independent but some are not.

Independence is key because it is vital that the ability of advocacy organisations and advocates to carry out their roles is not compromised in any way. For example, if an advocate was also a care provider and someone wanted to raise issues about their care, it is clear that the advocate's ability to support that person would be severely compromised. Independence is concerned with the minimisation and management of real or potential conflicts of interest.

Ideally, independent advocacy should be provided by an organisation whose sole role is advocacy or whose other tasks either complement, or do not conflict with, the provision of independent advocacy.

The bill should reflect more strongly the need for IMHA Advocacy to be independent and the government should ensure that advocacy services are supported to work towards independence

2.9 Costs

It is unclear on what basis the government's figure of £5,000,000 has been arrived at. This needs to be looked at in relation to the funds (believed to be 6.5 million) made available to implement the 'independent consultee' proposals in the Capacity Bill. Using the government's projection of 140 for the number of Whole Time Equivalent (WTE) Advocates needed produces a sum of £35,174 per WTE advocate per annum.

We believe that this figure is likely to be a substantial underestimate.

We suggest that the committee obtain information from the Department of Health on how these figures have been arrived at and propose that

2.10 Workforce implications

Given that there are some 50,000 uses of the Mental Health Act each year the figure of 140 advocates with a duty to provide information and representation appears somewhat conservative.

We urge the Department of Health to release information on how this figure was arrived at and to ensure that further detailed work on this is undertaken in partnership with advocacy providers and other stakeholders.

2.11 Criminal Justice System

Under the Bill the police will continue to have the power, currently provided under s136 of the 1983 Act, to remove a person from a public place who appears to be suffering from a mental disorder and in need of immediate care and control, to a place of safety for assessment. The power will as now last for up to 72 hours. A person can also be removed to a place of safety where a magistrate has issued a warrant under Clause 400 authorising entry to premises, if need be by force. The place of safety can be a hospital or police station.

AMHA believes that the Bill should provide the right of access to specialist mental health advocacy when the person arrives at the place of safety, whether it is a psychiatric hospital or police station.

2.11.1 Access to advocacy under S.116 Mental Health Orders

The provisions of the act as currently written do not give any opportunity for patient/advocacy input into the creation of the care plan necessitated by a mental health order.

The government proposes that the making of a mental health order by the court is conditional upon the preparation and submission to the court of a 'care plan' by an approved clinician - clause 115(1). However as clause 248(f) states that a patient will only become a 'qualifying patient' for the purposes of clause 247, when a mental health order is 'in force', anyone for whom a mental health order is proposed will not have access to advocacy.

Elsewhere in the act, clause 31(a), it is stated that in preparing a care plan for the patient, the clinical supervisor must consult the patient about the medical treatment to be specified in the plan unless it is inappropriate or impracticable.

While schedule 5 states that provisions of part 2 do not apply to part 3 unless specified in part 3, the proposal to consult people subject to treatment under statutory powers appears to create a 'spirit' for the act in keeping with provisions of the Care Programme Approach.

It is recommended that 248 be extended to those people for whom a 'care plan' under 115(1) is being drawn up, therefore giving access to an advocate to assist in the preparation of the care plan

2.12 Capacity and link with Capacity Bill

The role of an advocate is to empower people to make decisions for themselves that they are capable of making with support. Where a person lacks capacity, the role would be to help the person to participate in the decision making process to the fullest extent possible, to help them to speak up for themselves and to make sure that their views are heard. A basic principle of advocacy is that the advocate does not make any judgements, or express any opinions, of their own. They may help to ensure that the person is aware of relevant issues they may not have considered. They may speak on behalf of the person to ensure the person's views are heard and taken account of, but the advocate will not make any decisions or judgements on the person's behalf.

Advocates work with individuals to support them to have a say in their lives and to make as many decisions as possible. Where this is not possible, advocates represent the individuals' views and wishes and make sure they are involved as far as possible in the decision-making process. This includes working with individuals to establish what their preferences are, even when these cannot be communicated in conventional ways. The role of an advocate in such circumstances is to safeguard the basic human rights of the person for whom they advocate and ensure that their treatment meets agreed standards of good practice.

It should be remembered that because people's capacity may change over time an advocate's role in working with that person will also change accordingly.

In order to make the right of access to independent advocacy meaningful, advocates should be able to:

Attend, where practicable, any consultation, interview or meeting about the person's treatment or support
Have access to the person at any reasonable time.
Correspond or communicate in any other way with the person on any matter relating to their role as an advocate
Receive such information as would assist them to perform their role

Where a person has incapacity and cannot consent to information being shared on their behalf, health and social care staff should make available to the independent advocate such information as is necessary for them to do their job as an advocate effectively. This is necessary for the advocate to be able to undertake their safeguarding role. As a minimum, it would be expected that advocates are informed when:

A person is admitted to hospital
There is a review of care or treatment
Any form of compulsion is considered
Special treatments are considered
Plans for discharge or transfer are being made

Giving this information to advocates is permissible under the Data Protection Act 1998, which contains a specific exemption from restrictions on disclosure where the reason for disclosure is to protect a person's vital interests.

AMHA believes that the proposals to develop 'Independent Consultees' under the Capacity Bill should be abandoned and replaced with Independent Advocates directly linked with IMHA Advocates.

We recommend that the committee require the DH to provide an account of the links between the Bills advocacy proposals and proposals in the Capacity Bill to introduce 'Independent Consultees'

2.13 Advance directives

Clearly, advance directives may be useful for people to indicate whether they would wish to have an advocate or not. This would enable hospital managers and others to make a referral, if appropriate, where the person lacks capacity to request or consent to an advocate at a later date. Independent advocates may assist people to write an advance directive and keep it up to date. However, it would not be appropriate for an advocate to be a witness to an advance statement as this would involve making a judgement about the capacity of the person making the statement.

People should have the right to advocacy support when developing and implementing advance directives. Where someone lacks capacity IMHA Advocates should be consulted to determine the existence of any advance directive.

2.14 Correspondence

AMHA agrees that IMHA Advocates should be included in the list of official communicants in Schedule 11 as this will safeguard the patients right to correspond with his or her representative without interference by hospital or other authorities.

2.15 Tribunals

An independent advocate may assist a person to make an application to the mental health tribunal under the Act but may not make an application on their behalf. If the person is not able or does not want to attend the tribunal in person, then their independent advocate may present their views on their behalf, in line with normal advocacy functions. However the role of an independent advocate at tribunal must not replace legal representation. An advocate may support a person in communicating with their legal representative.

An independent advocate should not be asked to give evidence (other than that which they are assisting the person to communicate to the tribunal) in order to respect the confidential conversations a person would expect to have with their independent advocate. An advocate's role in supporting a person is incompatible with the role of a witness.

3. General Issues

3.1 User involvement

User involvement should be central to all advocacy practice and is essential for the healthy functioning of an advocacy service. AMHA believes that advocacy services must ensure that there are routes to meaningful involvement at all levels of the organisation.

The government should include guidance on user involvement in the MHA Code of Practice and should strengthen support for capacity building for advocacy services.

3.2 Informal advocacy

People should have the right to choose an untrained advocate/friend in place of or in addition to a specialist advocate if they wish. It is of vital importance that 'informal' advocacy, such as that provided by local support and self-help groups, friends and family is not excluded in favour of professional advocacy.

People using mental health services must have the right to bring along a supporter of their choosing to ward rounds, CPAs and other meetings.

3.3 Model of advocacy service - Implementation

AMHA supports the governments apparent intention to ensure that IMHAA Advocacy is provided by properly trained advocates. Advocacy under the Act needs to be delivered by people with appropriate levels of skills and a thorough knowledge of the Mental Health Act. In addition advocates need to be properly supported and supervised and this requires that advocacy services are properly financed and that salaries reflect both market rates and the necessary skills.

3.4 Comparison with Mental Health (Care & Treatment) (Scotland) Act 2003

Section 259 of the Act puts a duty on local authorities, in collaboration with Health Boards, to ensure that independent advocacy is available to people with a 'mental disorder' and that they have an opportunity to use it. The right to independent advocacy applies to anyone with a mental disorder. The term 'mental disorder' is defined in section 328 of the Act and includes any:

Mental Illness
Personality disorder
Learning disability

People with dementia are covered by the Act. The right to advocacy applies to people of all ages, including children, young people and people over 65. In summary, the right to access independent advocacy applies to any person who has a 'mental disorder' (as defined above):

Regardless of age, disability, ethnic origin, culture, faith, religion, sexuality, social background or personal circumstances
Whether or not they are subject to compulsion
Whether or not they are ordinarily resident in Scotland

The advocacy sections of the Act are due to be implemented from April 2005.

4. Issues for discriminated against communities

Discriminated against communities, including Black and Minority Ethnic people, Lesbian Gay and Bisexual people, women, people with learning disabilities, older people and children and adolescents are subject to multiple and well researched barriers to effective mental health care. Advocacy is a key component in combating these discriminations.

4.1 Black and Minority Ethnic communities

Advocacy services and their ability to meet the needs of black and minority users of mental health service is an area of concern. The inequalities black and ethnic minority communities face within the mental health system with respect to patterns of admission to mental hospital (over representation in acute/secure provision): diagnosis (misdiagnosis); treatment (more controlling, drug based and less talking treatments); accommodation and after-care services (poor referrals; low take -up of services; lack of information about services) are widely known.

Research shows these inequalities exist as a result of a combination of institutional and individual discrimination, poor planning, inadequate training of professionals and inadequate allocation of resources by funders. It is clear that an individual's race plays a significant role in the service they receive.

Minority ethnic groups generally experience poorer quality contact with the health service than the white population. Caribbean people are more likely than white people to be compulsorily treated and this occurs more often through the police.[20]

Barriers to mainstream health and social care services include a complex array of poorly organised and delivered services, inadequate communication services for non-English speaking groups, direct staff insensitivity to users cultural and religious needs and institutionalised barriers that perpetuate discriminatory behaviour and poor practices.[21]

Advocacy services which can help members of black and ethnic minority communities say what they want, obtain their rights, represent their interests and gain the services they need, would significantly improve ethnic minorities' general experience of the mental health system.

It is crucial to ensure that advocacy services working with ethnic minority communities can meet their needs. This means more than simply having a translator on hand. Recent research[22] among over 200 black and minority ethnic service users has highlighted that for effective advocacy for black and minority ethnic communities, advocates must be able to relay linguistic, cultural, religious and social messages about clients to professionals and where necessary challenge discrimination and racism. In order to do this staff competencies need to develop beyond simple cultural awareness. Competencies need to be sector specific, deal with issues of racism, the complexities of culture, an understanding of the context in which the user is approaching the service, combined with an ability to communicate with service users.

In order to ensure that advocacy services are sensitive to the needs of their client base, organisations delivering the services must be diverse in the range of people they employ. To develop a diverse organisation means more than attracting a higher proportion of black and minority ethnic people into the organisation as staff and volunteers. Culture will only change if there are more BME people as directors, senior managers and trustees together with greater accountability for delivering a sensitive and appropriate service at all levels of the organisation to communities and funders. Attention must therefore be paid to recruitment, retention and progression of black and minority ethnic people at all levels of the organisation.[23]

Training on cultural awareness, equality and valuing diversity should be a fundamental part of any advocacy service training programme. It should be such that advocates, no matter what their colour, are able to identify the cultural, religious, social and linguistic needs of their service users.

BME communities should be involved in developing local advocacy infrastructures, including BME specific mental health advocacy forums.

Where needed, advocacy services should provide bilingual workers. Contracted interpreters should be knowledgeable about mental health, advocacy and cultural matters.

Funding arrangements must ensure equitable distribution of resources according to local needs and ways of developing advocacy services in partnership with local communities should be explored.

4.2 Children and adolescents

Statistics on child admissions to psychiatric wards are not accurately or effectively collated, and it is impossible to access figures for children detained under sections of the Mental Health Act, or for children who are in private mental health facilities.

At present, there are 81 adolescent in-patient units in England and Wales (approximately 972 beds). In addition to these every year there are about 500-600 inappropriate admissions to adult wards, and 150-250 admissions to paediatric wards. These figures do not include independent sector inpatient care. Figures show roughly 7,000 children per year passing through NHS mental health inpatient care.

Though the vast majority of children in psychiatric in-patient care are informal patients, a significant minority are formally detained in these settings, primarily under the civil or criminal provisions of the Mental Health Act 1983. There is no lower age limit for Mental Health Act detention, and the Act itself has no detailed specific provision for children (it is all in the Code of Practice). The provisions in the MHA which are designed to support patient's rights are inaccessible to children.

A minority of children are detained under section 25 of the Children Act, which allows detention in secure accommodation, with treatment under common law. This is more legally contentious, though arguably much better for the children involved, as the Children Act has both a child-centred ethos and safeguards for children that the Mental Health Act lacks. The common law doctrine of necessity for treatment has advantages and disadvantages - it means treatments have to be more clearly justified but militates against preventative treatments.

In adult mental health, people are accustomed to talking about the "de-facto" detained - it is arguable that all children, certainly all under 16s are de-facto detained. Under 16s can be, and almost always are, admitted by their parents or guardians without consent. For children, the distinction between formal and informal detention is therefore misleading.

Children under 16 are assessed for competency in relation to treatment decisions (the so-called Gillick test, which considers whether or not the child has sufficient understanding to comprehend the nature and implications of the proposed treatment). A "Gillick Competent" child can give valid consent to treatment, but cannot refuse consent. No child under 16 has an enforceable right to refuse consent to treatment.

All children in contact with mental health services should have access to specialist mental health advocacy services which are designed to work with children and young people.

Children will have a right of access to a nominated person and/or to a specialist advocate. These changes are welcome, but will not be effectively enforced without providing children with comprehensive specialist advocacy services. The safeguards in the 1983 Act and the proposed safeguards in the new Act are adult-centred - they are not accessible to children. For example, the absence of information in child-friendly language and the absence of specialist advocacy provision make it a nonsense to suggest that a child could exercise their rights through the new processes in the MHA that are designed as safeguards for patients.

Specialist advocacy services are needed because: children are subject to a far more complex and restrictive legal process; children who experience mental distress are subject to a different and more complex set of socially excluding factors; children are excluded from all of the processes and forums that allow other mental health service users to make choices about their treatment and exercise and promote their rights; children require substantial translation work, including all of the information/legislation; working with children and young people in an empowering way requires a very specific and highly developed set of skills.

4.3 Lesbian, gay, bisexual and transgender communities

Despite the fact that homosexual orientation and behaviour has been absent from the DSM classification of mental disorders for almost 30 years, homophobic attitudes and assumptions still prevail in mental health service delivery. People who experience serious mental illness are frequently stigmatised and excluded from their communities. The DoH funded report "Diagnosis Homophobic"[24] found

difficulties in accessing services
discriminatory attitudes from staff
abuse from other patients
that patients had both the experience and the fear of being pathologised negatively on the basis of sexuality
that patients fear the consequences of disclosing their sexuality but also fear that concealing sexuality leads to being misunderstood and may result in inappropriate treatment;
misunderstanding of the implications of the Mental Health Act.
that research demonstrates that frequently lesbians and gay men avoid contact with statutory mental heath services and do not get the help they need.

Perkins (1995) suggests that most mental health assessment interviews assume heterosexuality by only asking about marital status. The conclusions of research show that lesbian or gay mental health service users need to access a lesbian and gay advocate with whom they can build a trusting relationship.

Comprehensive mental health advocacy services should include specific services for lesbians and gay men. The proposal to replace "Nearest Relative" with "Nominated person" is a welcome step. Under the 1983 Mental Health Act, section 1(3) makes clear that a person may not be considered to be suffering from mental disorder solely by reason of "sexual deviancy". The proposal not to include section 1(3) in the new Act reduces the existing protection and makes it even more important that advocates properly support this section of the community. It is crucial that advocacy services for LGBT communities are linked in to the communities themselves.

4.4 People with learning disabilities

People with learning disabilities who also have a mental health problem often suffer double discrimination. Prevalence rates for schizophrenia in people with learning disabilities are approximately three times greater than for the general population , with higher prevalence rates for South Asian adults with learning disabilities compared to White adults with learning disabilities. Reported prevalence rates for anxiety and depression amongst people with learning disabilities vary widely, but are generally reported to be at least as prevalent as the general population, and higher amongst people with Down's Syndrome.

People with learning disabilities are at risk of receiving no mental health service, due to a lack of communication between mainstream psychiatry services and learning disability psychiatry.

A very high proportion of people with learning disabilities are receiving prescribed psychotropic medication, most commonly anti-psychotic medication (40%-44% long-stay hospitals; 19%-32% community based residential homes; 9%-10% family homes) Anti-psychotics are most commonly prescribed for challenging behaviours rather than schizophrenia, despite evidence of harmful side-effects."[25]

Valuing People emphasises that "As with other health needs, people with learning disabilities should be enabled to access general psychiatric services, even with specialist support." [26] However "at present, most people with mental health problems who have learning disabilities receive the majority of their mental health support from specialist learning disability services."

People with a learning disability who are subject to the Mental Health Act 1983, in practice are less likely to be given adequate information about their rights, less likely to be supported to seek legal representation and are more likely to be treated under a section 3 for longer periods of time. It is therefore essential that appropriate independent advocacy is provided for this group of people.

There is an urgent need to collate the research available on the advocacy needs of people with learning difficulties. Despite the Government's commitment to advocacy for people with learning disabilities ( in the Valuing People and Green Light for Mental Health papers) there is a lack of consistency in the availability of advocacy for people with learning difficulties. AMHA urges the Government to implement adequate and effective advocacy which could include self advocacy for people with mental health problems who have a learning disability.

It would be appropriate for IMHA advocates to be placed within both mental health and learning disability advocacy services. Advocacy services would need to work together to develop a consistent, high quality service and to ensure that people with learning difficulties are accessing specialist advocacy that meets their needs.

4.5 Older people

Older People are often discriminated against and experience many barriers when accessing Mental Health Services. About 5% of the population over 65 has dementia and, at any one time, about 10-15% of the population aged over 65 will have depression."[27]

Independent Advocacy should be available to Older People in order to provide support in their decision making in relation to health care. Older People often "are the least likely to complain or even ask for advice and information" [28] regarding their admission, diagnosis or treatment, particularly in a Mental Health inpatient setting.

The Department of Health NSF Older People states that "Older People should be involved in making their own decisions, where this is possible and is what they wish, about the options available to them… It is also for the older person to determine the level of personal risk they are prepared to take when making decisions about their own health and circumstances" the NSF for Older People also states that " In order to make decisions about their care people need…independent advocacy services."[29]

Failure to address older people's needs can lead to isolation and feelings of lack of control, which in turn can lead to mental ill health. According to the Older People's Advocacy Alliance (OPAAL) UK, significant life events affecting people in later years include:

the consequences of retirement, which often brings about a reduction of income and social networks
the consequences of a decline in physical and mental health, sensory impairment and the need for support services
the consequences of a change in housing arrangements and
the consequences of ageism.

Dementia North in their report "Hear What I Say" identify "growing numbers of people with early dementia who expect to have a strong voice in the decisions that effect their lives."The same report recognises that "in the field of older people's mental health, service guidance has highlighted the importance of encouraging empowerment and of maximising the independence and autonomy of people with dementia. Many Older People with Mental Health problems have difficulty representing their own interests… they may need help making key decisions, which will affect their lives… or in managing a complaint against treatment they have experienced."[30]

Access to information is often a key element of advocacy and this can be an issue for older people who have a visual or hearing impairment. A report published by Joseph Rowntree Foundation recommends that "Older People should be provided with information about advocacy services- their availability and ease of access"[31]

Independent Mental Health Advocates will need to be aware and be trainedin issues relating to Older People and have access to older peoples advocacy services, where available.

Nationally, there is a lack of comprehensive advocacy services for older people, OPAAL UK have called for a strategic nationwide system, supported by government legislation, to provide independent advocacy services for older people in hospital" OPAAL 2000. Age Concern England has identified that "there is currently no systematic framework to ensure that all Older People have access to advocates to support decision making .. the draft Mental Health Bill will only provide for some of the Older People who require it"[32]

4.6 Autism and Advocacy

People with an autistic spectrum disorder (ASD) are particularly vulnerable to mental health problems such as anxiety and depression, especially in late adolescence and early adult life (Tantam & Prestwood, 1999).[33] Ghaziuddin[34] et al (1998) found that 65 per cent of their sample of patients with Asperger syndrome presented with symptoms of psychiatric disorder. However, as mentioned by Howlin [35](1997), "the inability of people with autism to communicate feelings of disturbance, anxiety or distress can also mean that it is often very difficult to diagnose depressive or anxiety states, particularly for clinicians who have little knowledge or understanding of developmental disorders".

Similarly, because of their impairment in non-verbal expression, they may not appear to be depressed (Tantam, 1991) [36].This can mean that it is not until the illness is well developed that it is recognised, with possible consequences such as total withdrawal; increased obsessional behaviour; refusal to leave the home, go to work or college etc.; and threatened, attempted or actual suicide. Aggression, paranoia or alcoholism may also occur.

In treating mental illness in the patient with autism or Asperger syndrome, it is important that the psychiatrist or other health professional has knowledge of the individual with autism being assessed. As Howlin (1997) says, "it is crucial that the physician involved is fully informed about the individual's usual style of communication, both verbal and non-verbal". It is therefore essential that appropriate independent advocacy is provided for this group of people.

All people with an ASD have impairments in social interaction, social communication and imagination. They therefore need support to express their aspirations, interpret and process information regarding their rights and to request relevant services.

The National Autistic Society report Autism: Rights in Reality (2003)[37] found that only 11% of adults had access to an independent advocate. People with an ASD are falling through the gaps between mental health and learning disability advocacy providers because of the strict funding criteria that many local authorities place on advocacy providers[38].

Advocacy support is needed with:

Transition into adulthood and adult services
Access to housing
Access to employment
Assistance with social integration and life planning
Access to health services

Adults with experience of independent advocacy testified to its value, but more advocacy organisations need to be equipped with the skills to work effectively with people with an ASD. This would be made easier with greater financial support from National Government for advocacy provision to ensure that people with an autistic spectrum disorder have access to independent advocacy that is suitable for their needs. A statutory requirement should be placed on local authorities to produce a local advocacy plan, which will outline how provision will be developed in the area, how different groups will be served and how funding dedicated to advocacy will be spent.

20 Chris Smaje author of Health, Race and Ethnicity ; Kings fund 1995. Back

21 Executive summary Health Advocacy for Minority Ethnic Londoners. Kings Fund 2000 Back

22 A Standards Framework for Delivering Effective Health and Social Care Advocacy , Kapasi R and Silvera M, March 2002, King's Fund. Back

23 One year on and counting (after the Stephen Lawrence inquiry)London Borough Grants March 2000 Back

24 McFarlane,L.1998.PACE Back

25 Key Highlights of Research Evidence of the Health of people with Learning Disabilities. Valuing People Support Team Back

26 Valuing People A new Strategy for learning Disability in the 21^st Century, Department of Health 2001 Back

27 National service Framework for Older People, A report on Progress and Future Challenges, Department of Health 2003 Back

28 Citizen Advocacy in Action: Working with Older People Ivers 1994 Back

29 National Service Framework for Older People, Department of Health 2001 Back

30 Hear What I Say - Developing Dementia Advocacy Services 2003 Back

31 Are you listening? Current Practice in Information, Advice and Advocacy Services for Older People. Joseph Rowntree Foundation 2003 Back