Learning disability and autism provision in the Mental Health (Scotland) Act 2003: findings from a scoping exercise

5. How should the review be conducted?

5.1 The third question for which the scoping study sought to gather views was in relation to how the review should be conducted. Different aspects of this question were explored with participants. Specifically, survey respondents and interviewees were asked about:

• What the governance arrangements for the review should be
• How the review should gather evidence and consult people
• Whether there are any practical issues (for example, information requirements, format and location of meetings and events, etc.) that the review needs to consider
• Whether there are any examples of good practice for engaging with different groups that could inform the way the review is conducted.

5.2 The main points made by participants are summarised below.

Governance arrangements

5.3 In general, people thought the review should be led by a chairperson supported by a group of some kind. The involvement of the wider group was seen to be important as a way of providing 'checks and balances' to the review process. However, there were different views about the size and composition of the group.

Chairperson(s) of the review

5.4 People usually saw the review as having a chairperson, and thought the chairperson should be someone who was:

• Independent (i.e. from all interested stakeholders and from government), impartial, non-judgemental, and willing to listen to all points of view
• Clear thinking, analytical and rigorous
• Respectful of diversity, and knowledgeable about equality and human rights issues
• Able to get the job done.

5.5 People usually said that these qualities were more important in a chairperson than their knowledge of learning disability, autism, or mental health legislation. Indeed, some thought that anyone with a deep understanding of these areas might not be seen as being independent. However, others had a different view and thought it could be helpful for the chairperson to have some prior knowledge of the issues under consideration.

5.6 This issue was discussed further with attendees at the first workshop in an attempt to reach some consensus about whether people would prefer the chair to have expertise in this area or not. However, again, there was no clear agreement about this. While some people thought that relevant knowledge or expertise in learning disability / autism would be an advantage, there was also a view that 'there is a different set of issues for autism and learning disability' and so it may not be possible to identify a person who would have the necessary knowledge or expertise in both. The point was also raised again that any 'expert' in this area might not be seen as sufficiently independent. There was general agreement among workshop attendees that other qualities in the chairperson may be more important than specialist knowledge of the subject - particularly as there was agreement that the chair should not be someone from one of the stakeholder professions. Chairing skills, authority, credibility, insight, openness and independence were all identified as important qualities for the chairperson.

5.7 Occasionally, people suggested particular individuals or organisations whom they felt would be well placed to lead the review. ^[16] More often, people made suggestions about the type of person who might have the qualities listed above. These included: an 'academic', a 'senior member of the judiciary in Scotland', 'someone with a background in human rights' or 'someone from the field of medical ethics'. Other suggestions were that the review should be led by 'an independent non-governmental organisation' or 'an independent advocacy organisation'.

5.8 Less often, people identified the sorts of individuals who they thought should not lead the review, including: a psychiatrist or other doctor / clinician, a civil servant, or (in contrast to the view above) a member of the judiciary or legal system. The different participants who made these comments all believed that individuals in these groups would not be perceived as being independent enough to lead the review.

5.9 There was also a suggestion that the review should have two co-chairpersons - one of whom would be an individual with a learning disability who should have support throughout the process to assist their involvement in the review. However, there was not strong support for this idea. Several difficulties were identified:

• If one of the co-chairs was a person with learning disability, then there should also be a third co-chair who was a person with autism. Such an arrangement was thought to be impractical.
• Having more than one chairperson might cause confusion about the leadership of the process.
• An arrangement involving co-chairpersons could lead to stalemate in certain situations or compromises being made that do not result in the best decisions.

Review group

5.10 There were differences of opinion regarding the membership of the review group (or committee). The two most common views were that:

• It should be a small group of experts (including experts by experience)
• It should include representatives of all the various stakeholder groups (for example, people with learning disabilities and autism, family carers, psychiatrists, social workers, public, private and third sector health and social care organisations, law organisations, advocacy groups, civil servants, etc.)

5.11 These two views were not necessarily mutually exclusive, and some people talked about having 'a group of representative experts'. At the same time, people thought it was important that the review committee should not be so large as to make it impossible for decisions to be made.

5.12 Some people saw the review group as being similar to the Millan Committee. Less common (contrasting) suggestions were that: a) the review should be led jointly by professional experts and people with learning disabilities and autism, or b) there should be a small group of 'specialist advisors' supporting the chairperson. There was also a view that the review group should be kept very small, given the particularly complex nature of the issue under consideration and the potential for strong disagreement among stakeholders. There were also concerns that non-representative, minority views should not dominate decision-making.

5.13 Given the wide diversity of views about the size, composition and role of the review group, this issue was discussed further at the first workshop. It was suggested that an 'ideal arrangement' would involve: a single chairperson with a core group of advisors (possibly around six people), and a wider reference group (or groups) which could be consulted about specific issues. The core group should comprise people who would inspire confidence among wider stakeholder groups. The reference group (or groups, since there may need to be separate groups for autism and learning disability) should include 'experts by experience' - i.e. people with learning disabilities and autism and parents / carers. Members of the reference groups could be identified through groups that work with people with learning disabilities and autism, or their carers, from around Scotland. There was also a suggestion that, rather than creating reference groups, it may be preferable to engage with existing groups, which would allow people to give their views in a more relaxed and familiar setting.

Governance principles

5.14 As well as commenting specifically about the leadership and governance arrangements they would like to see put in place, participants also discussed the principles which they thought should underpin the review. These included that:

• The review should be open and transparent.
• The review should be independent - of the government, elected representatives and the civil service - and should not be hindered in its work by short-term political agendas and interests.
• The review should be fair and impartial in its work. It should consider all perspectives equally, and ensure that non-representative, minority voices do not dominate.
• The review should adopt a human rights based approach, and be guided by the principles of equality, diversity and respect.
• The review should be inclusive and collaborative in its approach - those involved and particularly those affected by the legislation should have an opportunity to comment on the findings, and to help shape the recommendations.

5.15 Individual respondents to the survey emphasised the importance of providing resources to enable participation by members of the review group who were not involved in a professional (paid) capacity.

What should the review do ? Gathering evidence and consulting people

5.16 People generally envisaged the review process as involving two stages of: (i) gathering evidence and consulting people, and (ii) deliberation and decision-making. This latter stage may then lead to further consultation, particularly in relation to any recommendations made.

The review process

5.17 A few people made specific suggestions about the general approach which should be adopted in carrying out the review. As noted above, one suggestion was that it should adopt an explicit human rights approach. The way of doing this in practice might involve use of the FAIR process ^[17] , and adopting the PANEL principles. ^[18]

5.18 A few people described review processes that they had seen used in relation to other topics. For example:

• The indaba process: This process would allow for participation by everyone who has something to say. However, decision-making would rest with a smaller group of 'leaders' (a kind of independent panel of experts), and this group would have the task of sifting through the statements made by all the participants.
• The InterAction process: This process would involve bringing together, around the same table, a roughly equal number of people who: a) are affected by the 2003 Act, or their representatives, and b) have legal responsibilities in relation to the 2003 Act. Support could be built in to ensure that everyone is able to contribute fully and work together to find solutions.

Gathering evidence

5.19 Chapter 3 of this report set out the wide range of issues people wanted the review to consider and for which it will need to gather evidence. Workshop participants were invited to suggest any other sources of evidence that the review should consider.

5.20 They emphasised the importance of the review having access to up-to-date statistics and any other existing relevant data and research evidence. However, it was also noted that there is, in fact, very little data collected by local authorities or NHS organisations in relation to the care and treatment (or care and treatment needs) of people with learning disabilities and autism.

5.21 Other possible sources of evidence could include:

• The Mental Welfare Commission, particularly in relation to its programme of visits and its role in monitoring the use of the 2003 Act.
• Health and social care integrated boards across Scotland - there was a question about the extent to which support for people with learning disabilities and autism was on their agendas.
• The NHS complaints procedure (possibly accessible via Freedom of Information requests), and the Scottish Public Services Ombudsman.

5.22 There was a clear consensus that one of the main things the review should gather evidence about is the experiences of people with learning disabilities and autism who have been detained or compulsorily treated under the 2003 Act. People often suggested that it would be helpful to carry out case studies focusing on a sample of these individuals. A case study approach would involve not only engaging directly with these individuals and their families and carers, but also gathering information from service providers about the nature of the care and treatment provided, how this has changed over time and why, whether other less restrictive forms of care were considered, what options were available for less restrictive care, etc. (See paragraph 3.8 above.)

5.23 People wanted the review to 'get all sides of the story', and there was a question about how evidence could be challenged if there were concerns about its validity.

Methods of consulting people

5.24 In relation to the process of consulting people, participants emphasised the need for the review to be wide ranging, inclusive, or 'bottom-up' in its approach to involving different individuals and organisations. There were several recurring messages:

• It is important that the review make every effort to consult widely among people with learning disabilities and autism and their families and carers. Representatives of all groups with an interest should be involved from the outset in shaping the process to ensure this was achieved. (Several of those who participated in this scoping study have offered their help with this.)
• A wide range of methods should be used to consult people - and a very wide range of specific methods was suggested. (See Annex 4 for details.) People should be given choices so they can participate in ways that are meaningful and comfortable to them.
• The review will need to give careful consideration to accessibility issues including: the location and timing of meetings and events; the format of events; and the need to reimburse expenses for those whose participation might involve travel and other costs. Environmental factors (venues should have disabled access and offer quiet spaces particularly for people with autism) and the information and communication requirements of different individuals (e.g. the use of Easy Read, Talking Mats, ipads, video, theatre, internet, etc.) were also highlighted. (See Annex 4.)
• It is important to consult carers and family members, particularly (but not only) carers and family members of those with complex / profound disabilities or communication difficulties. It was noted that it would be impossible for many family carers to attend events held in the daytime during the working week. Evening or weekend events, individual interviews, or surveys (online and paper) were considered to be possible alternative methods for obtaining the views of these groups.
• There were calls for the review to commission or work in partnership with appropriately skilled and experienced organisations in designing and / or delivering events and other review activities.

5.25 People emphasised the importance of providing support to people with learning disabilities and autism to allow them to participate fully in the review, with most discussing this issue in the context of face-to-face meetings and events. Support would be needed to help people understand and consider concepts and ideas (in preparation for and during events) and to help them develop and contribute their own views. Two issues were identified: (i) the challenge of ensuring that the views obtained were those of the individual, rather than those of their parent, carer or supporter; and (ii) the tendency that people may have to simply agree with strongly held views expressed by other people around them.

5.26 In a few instances survey respondents cautioned against the use of particular methods: one respondent questioned the reliability and efficacy of Easy Read questionnaires when used with those with learning disabilities (this view was, however, in contrast to those of people with learning disabilities who strongly advocated the use of Easy Read); another suggested that focus groups may be stressful for some participants.

5.27 A range of examples of good practice for involving people in policy-making and decision-making were offered by several survey respondents. This information has been collated at Annex 5 for reference.

5.28 Participants in the first workshop suggested that the use of social media might be particularly useful for making contact with and consulting groups within the autism community. Participants in the second workshop thought that consulting people with learning disabilities in small groups (face-to-face) in friendly environments would work best. In addition, people will need to be given assurances that their contributions will not affect their future care, treatment or career progression.

5.29 Participants in both workshops were specifically asked for their thoughts on how the review could reach people who may not be connected to services, advocacy groups or campaigns. People agreed that it would be important for the review to try to engage with people (both those with learning disabilities and autism, and their families) who may not be in contact with services.

5.30 They suggested that this might be done through:

• GPs and health centres
• Occupational therapy services (people who are not in contact with other types of services may come in contact with hospital services)
• Social media
• Local authority records of guardianship orders
• Schools and further / higher education institutions
• Community events and social groups
• Informal support groups
• Word of mouth.

5.31 There was a view that the review should include a media (and social media) campaign to target people not connected to services or other groups.

Weighing the evidence

5.32 Participants recognised that there were some strongly held views in relation to the subject of the review. Some commented on the importance of finding a way to assess the divergent views of different groups, and there was a suggestion that the review may need to consider how different views might be 'weighted'. Some argued that the views of individuals and their carers should be given prominence, while others were concerned that strongly expressed minority views should not dominate the process. There was also a suggestion that the review should seek to 'triangulate' views from different perspectives.

Timescales for the review

5.33 During the parliamentary debate on the Mental Health Bill, it was proposed that the timescale for the review should be three years from the date of royal assent (4 August 2015). However, while this timescale was thought to be reasonable, no specific commitment was made in relation to the timescale for the review because the (then) Minister for Sport, Health Improvement and Mental Health felt it was important to consult with stakeholders about the scope of the review first, before setting a timescale.

5.34 In the meantime, the Scottish Government has proposed that the review should start 'by April 2017'. ^[19]

5.35 Neither the survey nor the interviews explicitly explored the issue of the timescales for the review. However, people often raised the issue spontaneously, suggesting timescales ranging from two years to five years.

5.36 Comments made by interviewees about the timescales for the review often emphasised the significant amount of time that would be required to help people who may have little or no knowledge about, or experience of, the 2003 Act to understand the very complex issues that the review will be considering. For example, different individuals argued that:

• 'The timescales for the review need to be realistic.' The early stages of the review will need to be spent in giving people with learning disabilities and autism information about the Mental Health Act so that they can give their views about possible changes in an informed and meaningful way later.
• 'The process for this review needs to be designed differently to make the process accessible to people.' It will take time for Easy Read and other information materials to be developed and tested in an ongoing way during the review. It is important not to underestimate the time required to give people the support they will need.
• 'Consultations and events with people with learning disabilities are often too rushed.' People often are not given sufficient time to think about issues and formulate their own responses to them. This results in participation feeling tokenistic.
• 'A five-year timescale would be realistic' if the review includes a review of other related legislation in Scotland.

5.37 Given that there was a range of views expressed on this issue, the question of timescales was discussed at both workshops.

5.38 Among workshop participants, there was no clear consensus about what the timescales for the review should be. Views ranged from 'it should take as long as it takes, but there should be regular updates and communication about progress' to 'it should be completed within 18 months from April 2017'. ^[20] Those who argued for shorter timescales were those in learning disability groups who wanted the review to be completed, and any new or amended legislation to be brought before the current Parliament (i.e. before May 2021).

5.39 The following is a summary of the range of comments made by workshop participants on the subject of the review timescale:

• Information will need to be developed and made available to people in a range of formats. The review should allow sufficient time at the start for developing and sharing this information.
• The use of face-to-face consultation (in small groups) is likely to work best for people with learning disabilities. This will have implications for the timescales of the review.
• The timescales for this review should be similar to those of the Millan Review (i.e. about two years for the review process itself).
• It is important that a timescale is set for the review and that this is adhered to, rather than allowing the process to go on indefinitely.
• A timescale of 18 months from April 2017 would effectively mean 12 months for fieldwork (evidence gathering and consultation) and 6 months for writing up the findings. There was a query about how realistic this was.
• However, a counter-argument was that different aspects of the fieldwork could be run in parallel to meet the 18-month deadline.