ReportHow can we ensure that people with lived experience are central to shaping Scotland’s future mental health laws?

10.30am-3pm, Wednesday 11 September 2019 The ALLIANCE, Venlaw Building, 349 Bath Street, Glasgow, G2 4AA

MORNING SESSION

Welcome and introductions Lucy Mulvagh, the ALLIANCE

Lucy welcomed everyone. She explained the format for the day and reiterated the purpose, which was:

Information-sharing and discussion to: Explore what is known about John Scott QC’s independent review. Share information about any existing or planned work related to the review

and involving people with lived experience. Identify (new) action that could be taken. Seek support and collaboration with others on new or existing activities.

Scottish Mental Health Law Review update, questions and discussion

John Scott QC, Independent Chair

John explained that the Terms of Reference (ToRs) for the review had been published online that morning. They are available here: https://www.gov.scot/publications/mental-health-legislation-review-terms-of-reference/

John went on to introduce himself. His day job is as a criminal defence lawyer and he’s been involved in the third sector for a long time, starting with the Scottish Human Rights Centre, where he was convenor after Alan Miller. He was then convenor of the Howard League for Penal Reform.

John explained that he’s been doing a lot of research since his appointment in May – a lot of reading and listening. He welcomed the event as a helpful start of a conversation with individuals and groups present. He doesn’t want participants to

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think of this as their only opportunity and expects to be speaking to and listening to everyone over a considerable period of time. The event subject - how can we ensure that people with lived experience are central – is an important part of how the review will work. When the minister made the announcement, she said lived experience had to be at the review's heart. How do you do that? There is a version of that in Andy Rome’s independent review of learning disabilities and autism. John and his team have looked at that model and had a presentation from Andy and conversations with other review staff.

John explained that the review he is leading is large-scale and into which the other reviews will feed, including Andy Rome’s review which reports in December. John’s review doesn’t have a specific period of time, although there will be an interim report in May or June 2020 and it is likely to take around two years, but this hasn’t been formally confirmed. It’s envisaged that in early 2020 the review will look at information, including the learning disabilities and autism report, and will begin to do consultation, through a proactive outreach programme. After this they will have a better idea of how long it will take. The review has the support of Scottish Government to take as long as it needs.

The review would welcome views on its Terms of Reference. John recognises that the use of the expression 'mental disorder' is problematic for some, however this is the term used in the legislation which is why it is in the terms of reference. As the review work develops, they want to see if there are better words and descriptions hat can be used. John also noted that ensuring the legislation reflects social, economic and cultural rights is a crucial underpinning of the review that also came from the Minister for Mental Health, Clare Haughey MSP, who specifically said there should be a human rights approach with regard to UNCRPD (United Nations Convention on the Rights of Persons with Disabilities). John noted that this might be controversial for some but it’s potentially an important way in that may involve cultural change on the part of some places and people and organisations to have a human rights approach at the centre rather than some other approaches.

John next looked at what the ToRs have to say on maximising decision making autonomy when interventions are being considered, and explained that he’d welcome people’s views on this. He doesn’t like the term 'alternatives to coercion' because he feels it gives coercion a primacy that it should not have.

He also pointed out that the Terms of Reference will look at patients' experience of compulsion and questioned why there’s been an increase in compulsory orders. He next looked at what the ToRs say about capacity and noted that he’s begun researching alternatives including looking at a capabilities model, rather than the blunt test of legal capacity.

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John explained that he’s spoken to Alex Ruck Keene, who was involved in a similar review in England, and noted that there was some unhappiness around how that review was developed and what was recommended.

John then posed the following rhetorical questions: how do we put human rights and the individual at the centre of the law, and make sure any compulsory measures are restricted to only where appropriate and necessary?; do we need compulsory measures at all? (in some countries there are none. So the review will need to understand how those systems operate. He noted that there is no country that is fully compliant with UNCRPD.

John finished his presentation by noting that the review is going to start by setting up two advisory groups and that three or four people with lived experience will be recruited as members on both. One group will focus on engagement and consultation, and another group will focus on compulsion.

During the question and answer session after John’s presentation, the first question asked for more information about the capabilities model that was referred to. John noted that this is an asset based approach that maximises the potential in the individual, enhancing autonomy and what the person can do with varying degrees of support and information, not focused on what they can't do.

Other participants then noted that they couldn’t see any reference to carers and family rights in the ToRs and stressed the importance of ensuring that unpaid carers (rather than paid carers) are included in the review. John noted that the review absolutely needs to hear from unpaid carers.

Another participant then spoke about the importance of ensuring that the review doesn’t use inaccessible terminology and language all the time, and has all its information also available in simplified, accessible formats. Inclusive communications, including BSL interpretation, is essential. John confirmed that this would be part of the review’s approach and he has learnt from Andy Rome’s work about accessibility, including ensuring that everyone gets papers well enough in advance, etc. The engagement and communication advisory group will help with this work. John also pointed out that the Secretariat has an email address - SecretariatMentalHealthLawReview@gov.scot – that people can use, and feel free to invite the review team to meetings, share information and evidence, literature or other materials.

One participant informed the event that in the Greater Glasgow and Clyde area there are estimates that in the next five year period bed numbers will reduce by 60, but this accompanies an estimated 3% year on year increase in demand for mental health services. So hospital based models will be under increasing stress. The participant noted that they go into these hospitals and sees people are more acutely unwell

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within hospital settings than they were a few years ago. The participant noted that we have to do more work with communities, but at the same time we’re seeing cuts to social care, and CPN services are being reduced. It feels as though services are withdrawing from many people's lives. Peer organisations and Third Sector organisations are playing a huge part in mental health and will continue to do so over the next few years, whether on a voluntary or paid basis. The law needs to be future proofed.

John noted he is interested in looking at compulsory measures in different parts of the country, including some of the practicalities of it (like bed availability) and also measuring provision in the community. His view is that we need to be as ambitious as possible. He reiterated the independence of the review, the fact that it will make recommendations that will have to be seriously considered by Scottish Government and others.

Another participant then asked John if he would be able to come and speak with patients held in seclusion and high dependency, so they can share their stories face to face. John confirmed that he wants to go and meet people, hopefully before the end of this year. He also reiterated there will be an advisory group on compulsion and that people with lived experience will be members of that group.

The final observation shared by a participant as part of this session stressed how important it is that action meets the words of the review and independent Chair. In response, John noted that the review is not an academic exercise nor is it just about revising the law. It’s also about changing policy and practice, and it’s important to note that this might take several years. However, in the meantime, he wants to speak to people, hear from them, share good practice where there is some.

Implications of a rights based approach for the independent review Cathy Asante, Scottish Human Rights Commission

Cathy started by introducing herself. She works at the Scottish Human Rights Commission (the Commission) and her background is as a mental health and incapacity lawyer. Her role at the Commission is focused on human rights based approaches and what they mean in practice and trying to support them in a meaningful way.

Cathy noted how good it is to hear so much discussion on human rights based approaches. She explained that her brief presentation was going to focus on was the implications of what it means so we have shared understanding of what substance of that is. She recommended looking to the learning disability and autism review and seeing what can be transferred over from that. She’s an advisor to that review and is working to help them identify what a human rights based approach does. It's one of the best examples Cathy has seen in her six years at the Commission and she

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believes that a lot of their hard work can be copied over to John Scott’s review. She also noted that participants may may be aware of the review of delivery of forensic mental health services. Cathy went to a meeting of this recently, and there is a through line of human rights going through these reviews about mental health. Cathy went onto say that a human rights based approach is aimed both at the substance of questions that are being looked into and the process of the review itself. She noted that it’s not necessary for this review to argue for human rights to be included in the substance, because it’s already explicitly addressed in the ToRs.

Cathy noted that taking a right based approach in practical terms can use as it’s guide the PANEL Principles. These are essentially the principles of a human rights based approach and central elements to guide your process throughout.

PANEL stands for: Participation, Accountability, Non-discrimination, Empowerment and Legality.

Even though it’s the last word in the set, the best place to start is with Legality, but this is about identifying what human rights we’re talking about it. Specific rights apply to specific context and it’s helpful to think about what they are at the outset to inform the conversations. In terms of which human rights we’re talking about here, there’s a huge amount we can look to in the ToRs. When the independent review was announced, one reason the Minister for Mental Health gave for it was because human rights have developed a lot since 2003 when the current Mental Health Act was created.

Back then, the UN Convention on the Rights of Persons with Disabilities did not exist. The UNCRPD has led to a big debate that is transforming our understanding of mental health care and how it should operate. Some of this may be controversial for some, but a lot of people are grappling with these questions and there are a growing number of Scottish and international examples we can use in this debate. Since then also, the European Convention on Human Rights has developed it's understanding around mental health care – broadly moving away from justifying restrictions on people’s liberty too easily and looking more towards principles like reciprocity, so if someone is going to have their liberty taken away we look more at what the quality of care they are getting is in return.

Cathy then noted that the Participation principle is related to people's experience. It means that people impacted by the recommendations of this review and mental health legislation should be involved in decision-making that will impact on their rights. There is guidance from the human rights framework and a UN Committee has published a General Comment about good principles of participation. Practically speaking, one action could be removing jargon and making information accessible so everyone can have informed conversation about the review, not just lawyers and

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academics. It can also involve removing practical barriers, like someone being detained in hospital, who therefore can’t come to consultation meetings. It’s important to take a strong stance on practical arrangements so those on the review’s advisory groups can attend in a way that’s not too burdensome for them. The Third Sector is important in terms of making links with the right people for the review to speak with and identify those less likely to be heard from and support collaborative work.

Cathy noted that the Accountability principle is important because for human rights to be real we have to monitor how they are being respected, protected and fulfilled. In terms of what this principle means for the independent review, it's about transparency, being clear about how participation is being put to affect, how evidence is being used, and being able to track how the process of the review itself has been accountable. It may also involve considering where accountability lies in human rights and how much accountability there is in mental health legislation. There may also be new questions that come up during the review.

With regard to the Non-discrimination principle, Cathy noted that this involves identifying people who face the biggest barriers and which groups have differential experiences. It’s not just the protected characteristic groups, but other ‘seldom heard’ communities, like people living in rural areas. It’s also about groups that we don't have that much information about, for example BME groups, where there’s a lot of data gaps about their experience in Scotland. Process wise for the review, it’s about making sure those groups are involved.

Finally, on the Empowerment principle, Cathy noted that this is an important element for the Third Sector; the idea that people need to understand their rights and be able to have discussions about their rights, in order to claim their rights in reality. The Third Sector can help with identifying and addressing the gaps and help empower people to understand their rights.

After her presentation, Cathy answered a question from a participant on whether progress with human rights must be step by step, or if there can be a great leap forward / paradigm shift. She noted that it depends which rights you are talking about. In terms of economic, social and cultural rights – like the right to health – the legal principle that applies is progressive realisation, which means we get there over time rather than immediate application and enforcement. But you still have to be able to show things are moving forward in the right direction. Also with regard to legal capacity – Cathy noted that the UNCRPD oversight Committee has noted that there needs to be a paradigm shift because if we take progressive steps on this we will never actually get there. There is mixed opinion on this – some reviews do not agree with the Committee and say that we need to take it more slowly.

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How Mental Health Network Greater Glasgow is engaging people about the review

Gordon McInnes, Mental Health Network Greater Glasgow

Gordon introduced himself by saying he’s worked at the Mental Health Network (the Network) for eight to 10 years in various forms of engagement with just about every service user group - head injury, sensory loss, learning disability and so on. A lot of the work he does is strengths based. He’s been working on advance statements and anticipatory care planning and the Mental Health Network see the independent review as a great opportunity. He noted that many people have strong opinions about mental health care, and it’s important to tap into and listen to these opinions. He also noted that people don’t often want to talk about being unwell so advises that the conversations focus around improving things and change.

In the Network’s consultation about the review they have a few simple questions. So far they have done one focus group with 10 people at Bipolar Scotland and they have carried out four individual interviews. They discuss the trajectory of illness and anticipatory care. Gordon gave one example: if a woman has experienced a period of perinatal ill health then decides to have another child, with support she could plan for another period of ill health. The Network believes that even if we can foresee periods of mental ill-health, there is not enough work being done on anticipatory mental health care and there is a huge amount of experience that is not being tapped into.

Another question the Network asks is ‘Are you aware of safeguards in the mental health system?’ This is a question not just about knowledge, but also about agency. Gordon has worked with people to make advanced statements and some of them have transformed their care; some have made radical changes.

The Network also asks people when they want services to intervene in their mental health and how. Gordon had talked with someone recently who liked being manic. He felt that when he was depressed, his life was rubbish, but when he was manic, it was good. But mania led onto psychosis. He therefore made a statement about when he wanted services to intervene and why.

Involving deaf people in the review Derek Todd, deafscotland (double-click on the icon)

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Independent advocacy – legislative right vs reality Shaben Begum, Scottish Independent Advocacy Alliance

Shaben introduced herself and the Scottish Independent Advocacy Alliance (SIAA), which is the only national organisation with a remit to support and defend independent advocacy.

Shaben took us on a trip back to 2003, when Scotland’s Mental Health Act was the first piece of UK legislation that gave people the right to access independent advocacy. Over the years since, Shaben has met many people from around the world that think Scotland’s mental health legislation is the pinnacle of excellence and the fact independent advocacy is in there is wonderful. In England, for example, you must be detained or close to this in order to access independent advocacy, and it’s very different in Scotland.

Shaben noted that the recognition that Millan had that advocacy plays a really important role in giving people a clear understanding and knowledge of their rights and increases their agency are important concepts to bear in mind. SIAA support the way wording of the legislation on independent advocacy, and Shaben has lots of discussions with Local Authorities and NHS and Integrated Joint Board commissioners about what that it means. The law notes that independent advocacy includes collective and individual advocacy. It was collective advocacy groups that campaigned to make sure the right to independent advocacy was enshrined in the law.

The Adults with Incapacity Act notes that those with incapacity have same rights as in Section 259 of the Mental Health Act. Many people don’t understand this. Back in 2003, Shaben noted, independent advocacy sat alongside advanced statements and named persons and these three were seen as new and innovative safeguards that got people excited about seeing a new way for mental health services and provision to be delivered. It was thought that Scotland was going to have a paradigm and cultural shift, but unfortunately this has not happened.

Shaben also wanted to flag up the rights based PANEL Principles. She noted that independent advocacy and human rights can't really be separated out from each other. Participation – independent advocates can help people participate in independent reviews like this. Accountability – independent advocacy can help hold decision makers to account. Non-discrimination - independent advocacy actively fights discrimination. Empowerment – independent advocacy can help empower the person so they advocate for themselves. Legality – independent advocacy is all about promoting people's rights and ensuring that decision makers are working within the law.

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Shaben finished by noting that we are supposed to be working in a system about ensuring people are thriving not just surviving. She believes that independent advocacy has become an emergency service and those facing detention or loss of liberty are prioritised, but others who want independent advocacy don’t have easy access to it.

One participant asked Shaben to identify the biggest barrier to having independent advocacy services based in the community and easily accessible for those who need it. Shaben noted that SIAA had campaigned for additional rights around planning of independent advocacy and noted that every Local Authority is supposed to have a strategic plan that means advocacy is growing and developing and more groups are having access to independent advocacy. The first report showed poor results. More strategic plans have been produced but there is no financial information in them. Finance is a big part of it.

How Voices Of eXperience are engaging people about the review Lucy relayed the email update that had been shared by Wendy McAuslan of

VOX as follows:

VOX has been running a parallel involvement process and have so far involved around 70 individuals with lived experience. They aim to engage with 100 individuals. They have also had some brief discussions with John Scott, presentations from Paul Hutton from Edinburgh Napier University on supported decision making and had information from Kirsty McGrath of the review Secretariat on the direction of travel re the MH act and other legislation. VOX has found that engaging directly with people with lived experience in small groups using case studies has worked very well, especially in engaging with those who may feel uncomfortable in a larger group setting. VOX will share a report in November 2019.

The Peoples' Mental Capacity Act: creating new legislation which empowers its subjects

Barry Gale, Mental Health Rights Scotland (double click on icon)

One participant asked Barry if he thought senior decision-makers supported his proposal/ideas. Barry thinks there is some support. There was also some discussion about whether there’s a need/role for mental health tribunals. Another participant

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commented that it was a very good presentation and that Barry would be good at teaching people how to campaign on things. The participant hopes that people will engage in Barry’s proposal and that John Scott QC will take some of what you said and use it for the review as the strategy is well thought out. John thanked Barry for his presentation, noting that although the review probably does not go as far as what Barry is proposing, there is scope for overlapping discussions, consultation and engagement in what you are doing and what we are doing.

AFTERNOON SESSION

Identifying key themes, activity and opportunities for collaboration Facilitated brainstorming, discussion and planning, led by Will Griffiths, See

Me

Five key themes were identified from the morning contributions. Participants spent an hour circulating between the topics of most interest to them and table hosts captured the discussions on flipcharts. The five themes and table hosts were:

Right to health and what a human rights based approach could look like (Cathy Asante)

Inclusive communications and accessible language (Derek Todd) The Peoples’ Mental Capacity Act (Barry Gale) Independent advocacy and supported decision-making (Shaben Begum) Hearing from/involvement of ‘seldom heard’ people (including people with

lived experience, unpaid carers and others).(Will Griffiths)

Table hosts shared with the whole group the final flipchart notes, which are set out below.

FLIPCHARTS

Right to health and what a human rights-based approach could look like

What is the purpose of MH legislation? Ensuring that people's right to good mental health is protected Doesn’t preference the medical model – mental health, social supports do

exist e.g. advocacy SS.25-27 Enable people to make their own decisions, in some cases against medical

advice. Law requesting preventative efforts and access to services (directions) Who decides what a person “needs”. Should be down to individual's choice,

will and preference

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Balance to be stuck between freedom and independence, and risk safety. peninsula should be swinging towards the former

Enablers Access to good quality independent advocacy - properly resourced A fairer, more informed way of advocacy being commissioned Structural independence of advocacy Longer, spectrum of involvement with people – Anticipatory care planning Supported decision making a key concept that could “unlock” the right to

health – or a new body? Directive powers and recorded matters Tribunals testing the supports, rather than testing the individual Change in the way capacity is assessed, or even talked about Other models of SDM e.g. personal ombudsman Advance statement and personal statements more binding – on who? Regular

review Facilitating community-based care Empowering people Law requesting partnerships to properly resource preventative measures. And

to promote in some way as requested to promote advocacy and AS GIRFEC person-centred model – Act could be stronger i.e. bring appropriately

placed for C+YP, espec those with impairments e.g. hearing Promotes tight to RH and duties pf DBs Conflict between rights: balancing person`s own rights btw choice and safety Test for intervention; change to ID risk to rights? Role of relationships and families and carers in supporting decision making Facilitating higher attainable standard of MH for everyone including carers Scrutiny and oversight: so new to look at in this way need a new body “Mental health” sounds and VR but actually focuses on restrictions. Not

preventative enough. Early intervention Do people understand right to services? Or what is their right to mental

health? MHA may be stigmatising

Inclusive communications and accessible language. Different things to different people Anyone who wants to access information - (person centred) Easy Read misunderstood Easy ‘understand’ not ‘Read’ Plain English/Family Friendly Options/ - varies choices Talking Mats BSL (picture of hands signing) Audio (picture of loud speaker)888 (subtitles) Text Transcript

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Act? Support/advocacy - 1 to 1 support Person centred Money – short term for foundation SLA – question included re. Accessibility/language provision Assessment / Training EQIQ / Human Rights Participation For All Communication For All / BSL For All NHS Making Communication Better campaign/resource

People’s Mental Capacity Act Content and framework Open and inclusive project Innovations like medication No more need for tribunals – go to specialist sheriff Approach mental health community and decision makers with proposal “Trusted supporter” Vs legal guardians and PoA Fit with wider changes Treat to power? - professional conversation UNCRPD incorporation?

Independent advocacy and supported decision-making IA is independent so plays an important role in SDM Effective SDM depends on positive relationships Unpaid carers? Collaborative approaches? ‘tension’ of the advocacy role in relating to unpaid carers There needs to be IA for unpaid carers as a right“it makes utter sense” Guardians?

o Legal duties re. Best interestso Is there clear understanding of the role of guardians - POAo Evidence of supported decision making

UN comment - no more substituted decision making Training on SDM for unpaid carers and guardians and POA

o Training on capacity – not black and white We need to scrap the term “Guardian” - paternalistic Group decision making process - makes it safer Greater use of Advance Statements

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o Need to stengtheno better awareness o More fundingo What's the point?

SDM in other areas of medicine vs mental health Named Person SDM – is it burdensome for the person? Repitition of Qs? IA – tool for autonomy and rights SDM - long term relationship with people without asking too many questions Trust in fundamental IA giving a voice Clarity about SDM in order to move away from substituted Everyone in society needs to have an understanding of SDM

Hearing from/involvement of ‘seldom heard’ people (with lived experience and unpaid carers).

Carers -o Seldom listened too Lack of confidence to come forwardo Ppl want to share – hear what are those avenues for engagingo Ppl are too busy to engage

Lack of understandings of named personso Named persons not aware they are entitled to legal representation

Confidentiality - if person doesn’t want person involved Next of kin must be involved - into Act? Supported decision making – making a plan for when a person is well –

triangle btw carer and hc prof and person w. MH can! Making better use of 3rd sector. LWs - could be on the line w. Hc profs How to legislate for this – 3rd sector - influence

Rurality Barrier – solution and put it online Hwr. Not nec only solution Rural poverty and poor MH – prevents travel, engaging

o Come to Inverness ≠ enougho Travelling to areaso Liaising w. Orgs already there – asking them to engageo Musselburgh – even diff. To engage in events / consultations

MH illness - cause and consequence of povertyo Don't get money in advance

Compulsion - o treatment – can't get psychologist, support service

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o Anticipatory Care - crisis reached before help comeso ICPs

Intersectionality - old age + rurality + BME + o Taken less seriously

Severe MH Probs – seldom heard – how to engage? o Some people who “get heard”o Understanding of decision making in all its formso SWI – Guardianship owner – to help a person make their will and

preference Education awareness

o Sense – 3rd sector org – engage other 3rd sector groups to PAMIS or Talking Mats

o Collaborating – MH Coordinator o Collaboration o Welfare guardianshipo Collective advocacy – collective voice to input into review and peopleo Prob MH act often just detention focus – what about the preventative

aspects?

Collective Advocacy Pre made groups already in existence Very good for people in rural areas Independent

Condition Specific Groups Hospital – hour to reach people there? User lead orgs – insight into their members PAMIS – best way to engage Headway – engaging them Intersectionality BME – community groups engaging with them Why come along to this? - buy in – how to engage Constituent gourd – people who experience homelessness, addiction and

prisons Carers – rurality and intersectionality with these BME poverty People with other big term conditions/confidentiality Increase knowledge of named persons, advocacy

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PARTICIPANTS

Name OrganisationAlison Cairns Bipolar Scotland Barry Gale Mental Health Rights Scotland Cathy Asante Scottish Human Rights CommissionChristopher Doyle the ALLIANCEDerek Todd deafscotland Ele Davidson CAPS Independent AdvocacyGordon McInnes Mental Health Network Greater GlasgowJohn Scott QC Scottish Mental Health Law ReviewKara Brown Children and Young People’s Commissioner ScotlandKaren Martin Carers Trust ScotlandKathleen Taylor Mental Welfare Commission for ScotlandKeith Guy Scottish Older Peoples’ AssemblyLorne Berkley Scottish Commission for Learning DisabilityLucy Mulvagh the ALLIANCEMartin Oxley Health in MindNeil Barrie PLUS Perth and KinrossNora Uhrig Equality and Human Rights Commission Shaben Begum Scottish Independent Advocacy AllianceSimon Porter REH Patients’ CouncilStephen Polockus REH Patients’ CouncilSue Lyons HUG (Action for Mental Health) Suzanne Martin Scottish Association for Mental HealthTony Bowman ARC Scotland William Griffiths See Me

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