Report on the Review of the Mental Health (Scotland) Act 1984

Annex 6

SPECIAL EVENTS

1. The Committee's process of evidence-gathering included three one-day seminars on issues of specific interest: learning disability, dementia and children's issues.

Learning disability seminar 10 December 1999

2. ENABLE organised a one-day round table seminar to look at how the Act affects people with learning disabilities.

3. The aims of the day were :

• to identify issues of particular significance for people with learning disabilities in the context of the review of the Mental Health (Scotland) Act 1984;
• to inform the Committee by exploring key issues in round-table discussions;
• to highlight areas of good practice which should be maintained and disseminated further or to identify bad practice/procedures which need to be changed; and
• to draw together conclusions.

4. Discussions were held in six sessions covering five key themes, which are summarised below.

Part 1:Why have learning disability in the Act?

5. Linda Headland presented views, from a rights perspective, on the positive and negative things about the Act for people with a learning disability. She considered further action was needed to:

• conduct an exercise to review different experiences from countries where there is not a comparable Act;
• seek experiences of people with learning disabilities who have been detained, analyse this, their treatment, how they went in, length of stay, outcomes;
• work on appropriate alternatives to include people with learning disabilities in a reviewed Mental Health Act - there is at the moment no consensus just confusion and polarised views;
• commission a specific piece of work on what might happen if people with learning disabilities were not included in the Mental Health (Scotland) Act.

6. Pauline Robertson presented views from a clinical perspective. She considered that the Act should include people with learning disabilities, and that those who had been subject to the present Act had not been disadvantaged by its provisions. Around 180 people with learning disabilities are currently detained. Arguments for inclusion in the Act included:

• Possible need for in patient assessment to clarify diagnosis.
• Broad scope of treatment in the Act.
• Need to deal with people with both mental illness and learning disability.
• Need to provide for long-term supervision and treatment for those who offend/ are at risk of offending.

7. There was no consensus among delegates about whether learning disabilities should be excluded from the Mental Health (Scotland) Act although it was recognised that specific provisions for people with learning disabilities (e.g. rights to day services and protection for vulnerable women) could be contained within other legislation.

Part 2: Learning disability and offending behaviour

8. Keith Bowden discussed how and why people get into trouble. He said there is still a public attitude that people with learning disabilities are potential offenders. There are no figures available to detail the extent to which offending is a problem within this group, and the majority of those who do come into contact with the criminal justice system are young men with mild to borderline learning disabilities.

9. Alison di Rollo presented a prosecutor's perspective on how the Criminal justice system can meet the needs of people with learning disabilities. She said a key question was how we balance the interests of a learning disabled accused person, who enjoys a presumption of innocence and the right to a fair trial, with the interests of the victims of crime, in particular, and society in general. The criminal justice system is not designed or equipped to "meet the needs" of the learning disabled or indeed any other accused, at least not exclusively. Its objective is to ensure, so far as possible, the fair and effective administration of justice, taking into account all of the various interests at play. Prosecution may be so incompatible with the needs of an individual learning disabled offender that criminal proceedings will not in fact be taken, even where there is sufficient evidence that the accused committed an offence. However, where the offence is serious, for example, sexual offending, offences against children, serious assault and homicide, the interests of the victim and the community will usually outweigh those of the accused, so that criminal proceedings will be justifiable in the public interest.

10. Delegates concluded that there are too few alternative disposals to meet the needs of people with learning disabilities who offend. It would be useful to be able to remit serious cases to a non-criminal tribunal for advice.

Part 3: Vulnerability and abuse (first session)

11. George Kappler gave a brief report on a Deficiency in Care and Treatment Inquiry carried out by the Mental Welfare Commission. The Inquiry concluded that: the adult concerned did not receive adequate supervision and protection during the period under review; the Housing Department were to be commended for their efforts in trying to secure appropriate care and protection for her; several agencies involved in her care, treatment and protection did not respond adequately and timeously to the majority of the assaults against her, which came within the scope of the Inquiry; poor communication between and within agencies resulted in an inadequate assessment of her mental disorder and level of vulnerability and contributed to unnecessary delays in the decision to use the powers of the Mental Health (Scotland) Act to protect her; this vulnerable person experienced deficiency in care throughout the entire period under review by the Inquiry.

12. Several recommendations were made as a result of the Inquiry, including one that the Millan Committee be made aware of the findings and recommendations of this Inquiry report.

13. Bill Lindsay gave a presentation on Sexual abuse _ how can we meet the needs of the perpetrator? He said historical attitudes existed that men with intellectual disability/mental impairment have a higher rate of offending and sexual offending, and sex offenders with intellectual disability/mental impairment are likely to re-offend. Possible reasons for a higher rate of sex offending are: less well developed social/sexual identity; less opportunity for sexual relationships; less clarity on societal norms/taboos; greater chance of detection and more likelihood of confessing. Professor Lindsay considered that there were erroneous assumptions that this group had poor self-control or a higher sexual drive. There is some supporting evidence of a higher rate of sexual offending and evidence suggests that 40-70% of men, with and without learning disabilities, will re-offend.

14. In conclusion, Professor Lindsay said individuals can, and should be encouraged, to take responsibility for their actions. People should be assessed on their ability to understand taboos of society and the criminal justice system. The criminal justice system needs to change to deal appropriately with people with learning disabilities who are charged, and there must be appropriate treatment and management.

15. Pat Christie presented a paper discussing the sexual rights of people with learning disabilities. She said that while it is important that the law should protect people with learning disabilities where they are vulnerable, we must also be willing to uphold their rights to experience a range of adult relationships of any kind within the law. As the law stands at present, it seems very difficult to accept that people with profound disabilities also have sexual feelings and rights. She also stressed that the protection of women afforded by the present s106 is valuable and necessary and that it could also be extended to men. However, the interpretation of the level of competence or understanding of the person with learning disability could be disputed. There is a need to address how the law could be adapted to be clear about abuse, and yet flexible. A further issue raised was the need for some legal protection of care staff who are genuinely trying to provide a normal sexual life to people with learning difficulties.

16. Delegates concluded that:

• There needs to be a better balance between protecting people and accepting normal sexual behaviour.
• People should not be denied the right to a sexual relationship just because they are in hospital or residential care.
• Section 106 should provide protection for both women and men.
• There is a lack of robust national guidance or a code of conduct for service providers which encompasses sexual rights and staff responsibilities for protection.

Part 4: Vulnerability and abuse (second session)

17. Colin McKay gave a presentation on protecting compliant voluntary patients. He said although very few learning disabled people were detained under the Act, there is no formal protection when, arguably, people with learning disabilities are less able to protect their own interests. Some options which have been put forward to offer protection included advocacy, complaints procedures, assessment and review of community care, and detention with clearer guidelines. Because these are people who are unlikely to be able to complain, there may need to be modifications to statutory complaints procedures in place for them which work. There may be a need for a minimum standard of care to prevent young people with learning disabilities being placed inappropriately in hospital.

18. Delegates agreed that there is a need for national standards in the use of restraint techniques.

Part 5: The rights of people with learning disability

19. Rob Warren presented a paper discussing the question 'can we make procedural rights meaningful to people with learning disabilities?' He said he believed the current legislation serves people with learning disabilities poorly and that the specific needs of people with learning disabilities are not addressed. Interventions in the lives of people with learning disabilities, and the consequent loss of personal freedom or loss of ability to choose and effect change, extends beyond the Mental Health (Scotland) Act and includes those affected by the Criminal Procedure (Scotland) Act 1995. At present there are insufficient safeguards within legislation for people with learning disabilities.

20. Mr Warren concluded that there needs to be:

• a specific recognition of the needs of people with learning disabilities and legislation to address this;
• a strong emphasis placed on seeking out and taking account of the views of those affected by interventions;
• a stronger and more positive emphasis placed on personal development and potential for change;
• processes and rights which are more clearly defined, rigorously applied and made more accessible;
• a far greater scrutiny of interventions and the way these affect people with learning disabilities;
• automatic and mandatory access to an individual advocate and provision made for this;
• an established right to collective advocacy and provision made for this.

21. Delegates agreed that there needs to be much greater provision of advocacy. There is a need to define when someone should have a right to an advocate. Advocacy should be mandatory in certain situations, e.g. when someone is subject to certain legal situations or treatments. Advocacy is also important for vulnerable groups of people including those with limited communication.

Part 6: The role and rights of carers

22. Linda Kerr presented a carer's experience of the system, on behalf of a carer with a son who has a mild learning disability, and schizophrenia. She described the experiences in coming into contact with mental health services. The issues raised by the carer included: she had to repeat the whole history every time she met a new psychologist, social worker, or doctor; her son's assessments stated he should have stability yet he had been in 12 different places in five years; no financial support was offered until the advocate stepped in after four years. However, the carer did feel very well informed in relation to her and her son's rights. Each time he had been sectioned the mental health officer (MHO) had explained what was happening and what they could do. What was lacking was practical support and adequate services.

23. Delegates stated that there should be a link between detention and a care plan to ensure that people receive adequate after-care services.

Dementia seminar 21 January 2000

1. The seminar which was organised by Alzheimer Scotland -Action on Dementia, aimed to address what the law should do, in relation to people with dementia and their carers, and how best to recognise their particular needs.

2. Discussion centred around a series of eight sessions, which are summarised below.

Session 1 : Policy context in relation to the Adults with incapacity Bill

3. Hilary Patrick explained the legislative background to the Committee's review and the interaction between the Adults with Incapacity (Scotland) Act 2000 and mental health legislation. Ms Patrick asked delegates to consider how incapacity might be included in a new Act, perhaps by the inclusion of a capacity test as the primary ground for intervention.

Session 2 : Assessing capacity for people with dementia

4. Dr Alan Jacques described the effects of dementia on decision-making, and the causes of variability in capacity. He explained how variability in the condition results in difficulty in assessing capacity. A highly skilled assessment process is needed, with multi-disciplinary input, geared for each individual person with dementia.

Session 3 : Assessing risk

5. Dr Charlotte Clarke gave a presentation detailing how people with dementia are assessed in terms of the risk they present to themselves and others. She presented case studies raising a variety of questions about how we consider risk and how we deal with it. Dr Clarke suggested a number of features which should be considered as central to the assessment of risk in dementia care:

• A framework should have trans-cultural credibility, and accommodate temporal dimensions of fluctuating levels of cognitive ability and progressive deterioration.
• A framework of risk assessment should identify both a conventional 'problem' orientation and an assessment of the strengths and competencies of the individual and their care environment.
• A framework should accommodate the service users' perspective of risk.
• Risk taking should be recognised as a component of practice - zero risk is not an option in therapeutic care.

Session 4 : Treatment and compulsion

6. Dr Donald Lyons addressed the issues of treatment and compulsion. He described four cases, the first of which illustrated the difficulty of trying to distinguish between a patient passively accepting treatment and actively resisting treatment. He suggested that a new Mental Health Act could usefully include a principle of 'minimum necessary intervention', as does the Adults with Incapacity (Scotland) Act. The second example related to a patient who passively accepted being in a nursing home. Several delegates noted that such examples were widespread but it was difficult to reach a definitive answer on whether or not admitting and treating such patients without formal consent/approval was proper or appropriate.

7. In discussing the third and fourth examples, many delegates confirmed that the use of disguised sedatives was widespread in practice. Arguments put forward to justify this might include that informing the person is pointless if he or she is incapable of processing that information, and that doing so is a less restrictive alternative to detention and forcible medication.

8. Dr Lyons observed that one of the biggest challenges for any new mental health legislation would be balancing the protection of the individual against introducing an unworkable bureaucratic system.

Session 5 : The status of carers in consultation and decision making about compulsory interventions.

9. Mr Hunter Watson described his experiences as a carer. He made the following recommendations in relation to incapacitated adults:

• Where practicable, healthcare professionals should consult with at least one carer prior to any welfare intervention.
• No-one should be denied recognition as a carer simply because he/she is not a relative, welfare attorney or guardian.
• Carers should have a right to all relevant information before discussing any welfare decision, and should be allowed the time to reflect on that information.
• Each incapacitated adult should have a care manager, who is not an employee of a care home in which the adult lives.
• Such adults should not be removed from a care home against their or their carers' wishes, without recourse to a court or tribunal.
• A new appeals procedure should reduce the need to go to court.
• Legislation for care homes should permit certain forms of treatment under the mental health act. Surreptitious medication should be illegal. Inspectors should monitor observation of legislation.

Session 6 : The role of independent advocates

10. Andrew Dunning gave a presentation on the role of independent advocates. He explained that there is no advocacy legislation in the U.K. although there is a considerable amount of policy guidance. Over a hundred schemes are now in place for older people, up from a dozen in 1993.

11. Mr Dunning detailed the reasons for advocacy with older people, especially at key points of transition to different environments. Protection is required from abuse and also from over-protection. Advocacy helps avoid depersonalisation, discrimination and encourages participation. Currently the shape of advocacy is determined by those who commission services -there is a need for the advocacy movement to shape the goals and outcomes.

12. He concluded that there is a need for a formal role for advocates in mental health law. To achieve this, professionals will have to look at conflicts of interest, ensuring rights and wishes are respected. Sufficient resources will be required to back quality standards and training.

Session 7 : Removal from home to hospital or other facility

13. John Armstrong discussed the difficulties encountered when removing someone from their home because of mental incapacity. In relation to the question on the justifications for compulsorily removing a person from home, Mr. Armstrong said legislation should identify the criterion -that the person needs treatment -and that treatment is for a general medical condition. It should be justifiable to remove someone suffering neglect, physical, sexual or financial abuse if there are no other means of prevention. He recognised that a move to a hospital was not always appropriate as would be required under the present Mental Health Act.

14. He gave a summary of proposals:

• It should be clear there is a right to gain admission to the person's home when necessary.
• The right thing has to be done when admission gained.
• It should be possible to get a warrant if admission is refused. The Vulnerable Adults Report contained a framework which would meet the needs.

Session 8: The use of physical restraints, including locked doors

15. Mr Jamie Malcolm discussed the use of physical restraints, saying that the key question for this session was "Does the law need to have special safeguards to cover the use of restraint?"

16. Mr Malcolm described many forms of restraint, saying it can be both explicit and intentional, or subtle and incidental to other care activities: e.g. catheterisation could, in some circumstances have the effect of restraining an individual. He said restraint should be seen as a significant intervention. It could, in some situations, be considered to constitute an assault. It is stigmatising, and carries a risk of harm to the person being restrained. It can increase the symptoms of dementia. Pressures on care staff because of limited training, poor resources and poor design of the care environment can lower the threshold for the use of restraint as can unrealistic expectations of the creation of an entirely risk free environment. External influences, such as inspection, audit and advocacy are necessary to counter this. Restraint should only be used after a full assessment, consideration of alternatives, and should be the minimum necessary for the minimum time.

17. Mr. Malcolm concluded by asking if restraint issues should be addressed purely by guidance, inspection etc, or whether there needed to be minimum safeguards in the law to minimise the risk of improper restraint, which interferes unduly with the personal freedom of the person involved and may actually increase risk of harm for that person.

Summary

18. The day's events were summarised with some proposals and some questions which delegates asked the Committee to consider:

• Should there be a distinction between treatment for mental and for physical disorder?
• Is resistance to treatment versus passive acceptance of treatment the dividing line for the Mental Health Act? What status should advance directives have?
• The Vulnerable Adults Report should be implemented.
• The discussion on Incapacity and Risk as basic principles raised the question of how far they are separate from each other and how much they interact.
• How far should access to services be part of mental health legislation?
• Who should do assessment? - it is important to have the views of relatives and carers.
• With regards to courts and hearings, there is agreement that the sheriff court as it stands is not the right place.
• There are lay and professional concepts of risk.
• There is a distinction between "minimum necessary" and "least intrusive" intervention.
• Should issues of treatment be divorced from the locus of treatment?
• Consultation with carers should be at least yearly.
• Should advocacy be a legally based right, and how should people who are mentally incapable have access to advocacy?
• There will be financial restraints, but hopefully this should not determine the law.
• Is restraint a form of treatment?
• Access to information for carers is essential.

Children's event 19 November 1999

1 Children in Scotland organised a one-day seminar to raise issues of particular significance concerning children and young people. A report from the seminar has been published by Children in Scotland. Chaired by the vice-convenor of Children in Scotland, Professor Lorraine Waterhouse of the University of Edinburgh, a collection of evidence was heard from a wide range of sources including professionals, practitioners and young people (see delegate list). The seminar aimed:

• to identify issues of particular significance for children and young people in the context of the review,
• to inform the Committee on areas of debate by exploring key issues under discussion,
• to emphasise areas of good practice and innovation relevant to mental health legislation.

Delegates

2. The discussion centred around the following presentations:

• Issues arising from cross-over legislation and recent policy recommendations
• Drawing the distinction between adults and children/ young people.
• Mental health and 'social, emotional and behavioural difficulties' (SEBD).
• Issues of Consent: Children and the Mental Health (Scotland) Act 1984.
• Provision of Services: transitional issues and issues of minimum standard setting.
• Adolescent self-poisoning in Edinburgh - past and present.
• Young Peoples Perspective.

Summary of discussion

Over-arching principles

3 The seminar identified the need for a legal enunciation of principles promoting the protection of the rights of children and young people. These principles should be in accordance with the UN Convention on the Rights of the Child and should be compatible with the Children (Scotland) Act 1995. These principles should be enshrined in the revised mental health legislation.

Harmonising legislation

4 The seminar recommended consistency across all legislation affecting children and young people. New legislation should be compatible with the Children (Scotland) Act 1995 and the UN Convention on the Rights of the Child. This would assist in clarifying the rights of children, young people, their parents and carers. It would further elucidate the responsibilities of all authorities and promote integrated services.

Code of practice

5 The seminar supported the idea of a mandatory Code of Practice to ensure that new legislation is fully and effectively implemented. Such a code should pay special attention to the needs of children and young people experiencing mental health problems and their families. It was further concluded that minimum standard setting should be included in the Code of Practice, to ensure an operable level of services and standards. This should specifically protect children and young people from being treated on adult psychiatric wards and ensure educational opportunities are not unnecessarily affected by treatment or caring responsibilities.

Compulsory powers

6 All participants attending the seminar agreed that any interventions in the lives of a child or young person should be kept to a minimum. Wherever possible children and young people should be enabled and encouraged to participate in decision-making procedures and should have their views taken into account. Within any new legislation participants would want to see it made explicit that no child is considered 'untreatable'.

Compulsion - the decision to utilise compulsory powers should be taken by a multi-disciplinary team and in consultation with parents or carers. All compulsory treatments for children and young people should have regular and full reviews. Certain decisions that have an irreversible effect (for example, ECT) should be avoided for young people without capacity.

Consent - should be sought from any child or young person who is capable of understanding the nature and possible consequences of the treatment. How, when and who judge a child's competence needs further attention, in guidance and training with consideration of what is judged as competent for the particular decision being made.

Detention - may be a necessary but extreme procedure. Therefore safeguards to ensure a child or young person's access to adequate and effective consultation and representation are essential. Children and young people should be treated within an age-appropriate environment.

Special groups

7 In order to ensure services reflect the full spectrum of needs, legislation must explicitly cover the diverse and differing requirements of all children affected by mental illness. The seminar emphasised that legislation must address the specific needs of the following:

• Children and young people with caring responsibilities,
• Children and young people with disabilities,
• The changing needs of young people through the stages of transition,
• Recognition of the differing requirements of male and female service users.

Communication and information

8 The seminar was of the view that communication and information were of key importance. Effective information and advice should reflect the distinct needs of each different client group. Information regarding mental health issues should also be provided in age-appropriate language to be more accessible and be made widely available for all children and young people. The views and opinions of all children utilising mental health services should be effectively sought and taken into account in any decisions which will affect them.

Independent representation

9 Provision for independent advocates to support children and young people in making decisions is further recommended. Any child or young person should also have the right to select or reject an appointed advocate. Advocacy services should also be available for parents and carers who require support and guidance in decision-making.

Implementation of legislation

10 Joint guidance should be issued for health, social care, education, the Children's Hearing System and child and adolescent mental health services. The Scottish Executive should establish an implementation group with specific responsibility for assisting with disseminating and promoting good practice relating to children and young people. The example of Children in Scotland's 'Implementation Forum' for the Children (Scotland) Act 1995 was raised by participants; this Forum, funded by the National Lottery Charities Board, was able to support and promote the participation of professionals and practitioners in the implementation of the Act.

Early intervention

11 Research indicates that early involvement prevents many children and young people from developing more severe mental health difficulties. The Millan Committee should thus advocate the development and improvement of provisions for early intervention. To achieve best results in this area, early assessment and a holistic approach to treatment are vital.

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