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| Report on the Review of the Mental Health (Scotland) Act 1984Annex 5CONSULTATION WITH USERS AND INFORMAL CARERS1. The Committee consulted users of mental health services, and informal carers, by means of three consultation events and the publication of two consultation leaflets, one of which was specifically aimed at people with learning disabilities. References to 'carers' in this Annex should be taken to mean informal carers. Consultation events 2. A series of three consultation events was organised by the Scottish Development Centre for Mental Health Services (SDC) on behalf of the Committee, and what follows are the key points taken from the report which the SDC made to the Committee. 3. The events held in Aberdeen, Edinburgh and Glasgow were organised in partnership with local mental health organisations (Aberdeen Mental Health Services Consumer Group, Consultation and Advocacy Promotion Service and Glasgow Association for Mental Health). The Committee was represented at each of the events. 4. Each event began with comments from the local organisation on the issues raised by the local users and carers they had consulted regarding the current Mental Health Act and the changes they wished to see in place. These sessions were followed by group discussions, aided by a facilitator. The delegates met at the end of the day to feed back key issues and to make further comments and raise questions. 5. Attendance at the events was as follows:-
6. There were a number of themes that came through very strongly at all three events for both service users and carers. These were:
7. Users and carers described experiences where their rights under the present Mental Health Act had not been upheld and felt there was little in place to safeguard them. There was a general view that the current Act gave too much power to psychiatrists, who seemed accountable to no-one for their actions and treatment of patients. Both service users and carers considered this unsatisfactory. The issues raised are summarised below. Stigma 8. Concern was expressed about the stigma society attaches to mental illness and there was recognition that the wider issues of stigma and discrimination need to be considered, particularly in relation to social exclusion and the desire for a more socially inclusive Scotland. Compulsory treatment and safeguards 9. There was general agreement amongst service users and carers that there was a need for some kind of legislation to ensure the safety of individuals who are mentally ill, and the general public. There was recognition that sometimes people need to be detained for their own safety and care, or for the safety of those around them. 10. Both service users and carers expressed a desire to see something in the Mental Health Act that limits and controls decisions concerning treatment. They want to see advance statements developed and implemented and greater protection for invasive procedures. Service users felt patients should have more choice about treatments, and medication should only be enforced when people are a danger to themselves or others. Carers felt there was too much reliance on medication, and felt that alternatives, such as counselling and cognitive therapy and life and social skills, should be more widely used. 11. Service users and carers felt that people should be involved more in decisions affecting them, and that communication between professionals and users and carers needs to be improved. If compulsory treatment is the only option to safeguard someone's life, then it needs to be administered in a humane way. Clearer national guidelines, which service users have contributed to, should be drawn up for staff in these circumstances; for example, wherever possible, staff of the same sex as the service user should administer medication. Forum for reviews/appeals 12. Both service users and carers felt the present system was too formal and unsympathetic and they wanted to see more done to raise awareness about mental ill health with sheriffs and other professionals involved in the process. 13. Service users felt a tribunal system would be a more humane approach and that service users should be part of any such system. They also felt that any new system should allow for an appeal for all powers of detention under the Act. Carers felt that their views should be taken more seriously by mental health officers (MHOs) when they are considering detaining someone under the Act. 14. Service users and carers want to have a less formal and intimidating procedure when people are being detained. Rights of service users and carers 15. The rights of service users and carers were key issues at all events. Both service users and carers recounted experiences which they felt demonstrated that the current Mental Health Act does not support or protect their rights. It was said that existing procedures are not being followed and there seems to be little in place to safeguard the rights and interests of these groups. 16. Service users want an act to state clearly what their rights are and what they can do to appeal against decisions. They would like information on the provision of independent support, for example from a contract of care setting out standards to be expected. 17. Carers also felt that any mental health act should be explicit about the rights of carers. Carers should have a right to more information and carers' views should be recorded. Carers felt that relationships within families are often damaged when they are asked to agree detention for the person they are caring for. They were of the view that they should not be required to make such decisions. 18. The information needs of service users and carers need to be addressed and radically improved. Information has to be available at all stages and in an accessible format. Service users felt they needed more information about mental illness from GPs and also need more information on discharge from hospital. 19. Service users and carers felt that advocacy should be more comprehensively developed across Scotland, using resources currently deployed in mental health services. Independent advocacy needs to be legitimised and its role in mediation acknowledged. 20. Access to services in the community needs to be more consistent. Many examples were given of people in the same city receiving different services, or being denied access because they did not live within a certain catchment area. The level of service a person receives should not be determined by where they live. More needs to be done to prevent hospitalisation when people are becoming unwell, and services should be available in the community, 24 hours a day, seven days a week. The view was expressed that clearer standards for services need to be developed. Safeguards for voluntary patients 21. There seems to be a lack of clarity about the rights of voluntary patients that needs to be addressed. Examples were given of voluntary patients being threatened with detention if they did not agree to treatment. Voluntary patients currently have little protection under the Act. Protection from abuse and exploitation 22. Delegates felt that more action was required to protect people who commit offences when mentally ill. The court system needs to be less formal in these circumstances and there should be protection from the media. Delegates agreed that the work being undertaken in the Review of the Health and Social Work and Related Services for Mentally Disordered Offenders, launched in January 1999, should address this in more detail. Mental Welfare Commission 23. There was a general view that the Mental Welfare Commission does not have enough resources to fulfil its current role. People are frustrated that the Commission often acts only in an advisory capacity and would like to see the Commission playing a more active role in safeguarding service users' rights and interests. Both service users and carers feel the Mental Welfare Commission should have powers to play this more active role. Promoting good practice 24. Users and carers expressed the view that psychiatrists need to be openly accountable for their practice and their practice of detaining people under the Act should be under greater scrutiny. Service users felt they should be actively involved in assessing the quality of hospital and community services and in an education programme for all professionals dealing with mental health on how to work with service users and carers. General issues 25. Delegates raised the following issues in addition to those already discussed:
Consultation leaflet 1. A leaflet directed to users of mental health services and informal carers was issued in June 1999. Over 11,000 copies of the leaflet were distributed via health boards, local authorities and voluntary organisations. By early January 2000, 202 responses were received. 2. The responses were analysed by the SDC who submitted a report to the Committee. What follows is a summary of points made from their report. 3. This consultation provided a channel for the people most directly affected by mental health law to give their views. There was an opportunity on the consultation leaflet to indicate whether the response came from a user, a carer, a worker or some other group. Of the responses received, 99 were from service users, 39 from carers, 60 from workers and four from groups. The wide range of responses indicated that many respondents had had direct experience of the workings of the current legislation. The responses included a number of specific suggestions about how existing arrangements under the legislation might be improved. 4. The general themes to emerge from the wide range of views expressed were:
5. A summary of respondents' views is given below. Experiences of detention 6. There were several common elements to the experiences described by respondents in relation to detention and the features users and carers perceived as important in relation to compulsory detention were:
Compulsory medical treatment 7. There was a common recognition among users and carers that compulsory treatment was required under certain circumstances to prevent deterioration in the individual's mental health and/or to avoid harm. It was considered that, as far as possible, any such intervention should be discussed and negotiated with the individual and where relevant the carers involved. Loss of control and autonomy was a major concern amongst users. 8. There was general opposition from both users and carers to the use of ECT without consent. This was partly a result of the damaging effects that were perceived to be associated with ECT. Compulsory treatment in the community 9. A majority of users and carers agreed that compulsory treatment in the community should be an option. From those who objected to this, objections raised ranged from the ethical, relating to human rights, to the pragmatic, relating to the practicalities of enforcement and ensuring compliance. Service users' contact with police or court 10. Overall, many people thought that the Sheriff Court was not the appropriate place to hear appeals or to arrange detentions. Both service users and carers found it intimidating. It often felt as if people were being treated as criminals. To a large extent workers supported these views. Access to independent lay advocacy and to legal representation were regarded as important elements in improving access to justice. Service users' rights 11. The rights of service users were linked to access to advocacy and to an acceptable standard of services. The principle of Reciprocity was inherent in many of the views expressed; expecting people to accept compulsory measures brought with it an obligation to put in place the services and supports needed to ensure that treatment was effective. Rights and protection of voluntary patients 12. The potential vulnerability of voluntary patients was an underlying theme to many of the experiences described. This indicated the importance of providing protection to safeguard individual rights and well-being. This was considered to be particularly important, as respondents questioned the significance attached to distinctions between voluntary and compulsory patients. In some instances, subtle ways of persuading patients to comply appeared tantamount to compulsion and yet the individual was assured less protection in the law. Carers' rights 13. The comments of users and carers reflected different perspectives on issues of information sharing, confidentiality and carer involvement in care planning. While users were more likely to have reservations about the role of carers, some were interested in ways of working which allowed the user and potentially the carers to make their wishes known in advance. Carers were frustrated and angry at being marginalised and overlooked by professionals. The absence of respite services was symptomatic of the lack of recognition of the significant role they played in supporting their relative or friend. Protection from abuse and exploitation 14. Respondents looked to mental health law to protect the interests of those who were vulnerable from exploitation or abuse. They were often critical of the ability of current provisions to achieve this end. Concerns raised ranged from poor standards of care to acts of deliberate abuse. A common theme was that users and carers found it difficult to complain or to have a complaint followed through, to ensure that the behaviour did not occur again. Advocacy 15. Users, carers and workers agreed that advocates could assist in many situations, including at time of detention or appeal, creating understanding between users and carers and between users and professionals. Details of advocacy were rarely given but the general perception seemed to be of someone independent of hospital and social work services who could interpret the user's needs to professionals. Advocacy was sometimes seen as a pathway to other services, such as after-care or legal representation. The Mental Welfare Commission 16. Respondents had mixed experiences and held very different perceptions of the Mental Welfare Commission. In some instances users and carers regarded the Commission as inaccessible and had concerns about its capacity to challenge professional opinion. Issues brought forward by workers 17. Workers raised a broad range of issues relating directly to their professional concerns, in implementing the Act, covering the following points:
Agencies providing services 18. Users' comments drew attention to a lack of integration in service responses and the need for greater continuity of care across agencies, localities and settings. Respondents wished to be assured that users would receive the same standard of care and protection from abuse, whether they were receiving a health or social service, were in a hospital, a residential facility or in the community. Guardianship 19. There was some interest in the extension and simplification of guardianship as a means of protecting people from abuse and exploitation. Personality disorder 20. The responses indicated concerns that the label of "Personality Disorder" is not helpful. One of the main consequences described was that people so labelled were less likely to receive an adequate response from health and social services. Advance directives and nomination rights 21. Advance directives afforded an opportunity for the individual to exercise more control by making provision for eventualities should they become unwell. This included the facility to specify the individual whom they would wish as a nearest relative in the eyes of the law. Special needs of women, children, and people with learning disabilities 22. Respondents were keen to see flexibility in the provision of the law to acknowledge and respond to individual needs, expectations and vulnerability. For women this meant recognising possible childcare responsibilities and preferences for single sex facilities, for children and adolescents it involved responding in age appropriate ways, without compounding distress. Finally the law was considered as an important protection for people with learning disabilities who might be at risk of abuse. Have your say consultation with people with learning disabilities 1. In December 1999 the Committee issued a consultation leaflet entitled Have Your Say to people with learning disabilities. Five hundred and eighty leaflets were issued and 101 were returned. This consultation focused on those aspects of the legislation with most salience for people with learning disabilities, seeking their views on detention, compulsory treatment, the rights of individuals and their families, and protection. The leaflet was distributed through health boards, local authorities and voluntary sector agencies. 2. Responses were analysed by Scottish Human Services, and what follows is a summary of their analysis. 3. The findings of the consultation gave a useful insight into users' views and gave powerful messages about people's life experiences. 4. Thirty-one of the 101 respondents had had personal experience of detention. Only four people reported that this had been a good experience, whereas 18 had described detention as a bad experience. The positive reports about detention centred on helpful staff, having a chance to talk and sort out problems. The negative comments concerned:
5. Most respondents felt there were times when it would be acceptable to make people take their medicine - when the person was ill, on medical advice or if there was a risk of danger to the individual or to others. Eight respondents said people should never be forced to take their medication. However, it was a different picture when the same question was asked about people at home. It was seen as less acceptable, and less practicable, to force them to take their medicine. forty-three respondents thought this should never happen; 39 thought it would be acceptable in some circumstances. 6. Most respondents believed that people should never be made to take treatments they did not want. Treatments which people thought should never be given without an individual's consent included ECT, some drugs and injections, aversion therapy and sterilisation. 7. About a fifth of the sample thought it was sometimes acceptable for some treatments to be given without consent; if the person was dangerous, on medical advice and in emergencies. However, respondents thought people should always be told what the treatment was and why it was necessary. 8. The most popular options for people being told about rights when going into hospital were by an advocate and by family members. The importance of accessible information was stressed; written information should include illustrations. People wanted to be told what was wrong with them and what was going to happen to them. 9. Just over half the respondents reported that, given help, they would use a lawyer, while just under a third would approach the Mental Welfare Commission. A significant proportion of the sample had never heard of the Mental Welfare Commission. 10. When asked what rights to services they should have, 27 people identified community nursing and 22 advocates. Other services identified included assessment, information, treatment at home, health care, and transport. 11. There were a number of underlying principles which people thought were important, namely:
12. In relation to sexual rights, 75 respondents thought there was a need for protection for some adults with learning disabilities. The best ways to ensure people only had sex when they wanted included an understanding of rights, opportunities to talk things over and sex education. The importance of stringent staff checks and training were also noted. Some respondents opted for more active risk limitation strategies, such as consent laws, constant chaperoning and surveillance techniques. 13. Views about carers' rights to information and decision-making were varied and fairly evenly spread. Some thought families should have no rights, others thought they should be able to make decisions on behalf of the individual, while others thought families should be involved but not have the final say. Fifty-nine people objected to families being given information about their care without their agreement and 23 thought this was acceptable. 14. Forty-two respondents did not believe they had adequate legal protection from ill treatment. Some had personal experience of bullying and harassment. Several respondents thought the police could do considerably more to help them, for example by responding more quickly when called for and investigating allegations of ill treatment more thoroughly. In addition some respondents had experience of the police not taking their complaints seriously and being unpleasant to them. 15. The responses to this consultation were very similar to responses from the consultation with service users and carers and the consultation events as described above. In particular the views were very similar in relation to:
16. The recurring themes underlying the responses were:
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