Edinburgh Community Voices is a collective advocacy group for people in Edinburgh who have lived experience of mental health issues, supported by AdvoCard. Below is a copy of their response to some of the questions asked in the recent consultation on the Scottish Mental Health Law Review
Question 2. What do you think about the approach that we are proposing for the Scottish Government to meet core minimum obligations for economic, social and cultural rights in this area?
The issue of attaining the right to the highest standard of physical health is one that is important to our members and was raised when we discussed the proposals.
There is often a concern that their physical health is ignored. Issues of accessibility in physical healthcare were raised here. Noisy, disorientating, overcrowded spaces, like those in places like the Emergency Department, can put people off getting care. Physical health care appointments can be traumatising for some people, for instance physiotherapy and female sexual health. People can be given appointments a large distance from their home, causing difficulties for people with agoraphobia or without access to a car.
It is important that people with lived experience have their rights supported across all health services, not just mental health. This should be included in the Scottish Mental Health Strategy.
Difficulties with housing and finances are often raised by our members as issues which affect their mental health and areas where they face discrimination. There was great support for widening the remit of the Scottish Mental Health Strategy, including housing as part of it, and setting out a clear framework for the progressive realisation of economic, social and cultural rights.
Discrimination can be faced by people when accessing housing and benefits. Sometimes this is direct discrimination, with people given poorer treatment because of their mental health issue. Sometimes it is indirect discrimination, with adjustments not being met for people’s needs. Discrimination can also relate to other protected characteristics, which can intersect. The discrimination people face can mean they do not have adequate housing or income, which can affect their mental health. Or the discrimination in itself can affect their mental health.
One person described discrimination they had faced, as a woman, from their housing association – the housing association didn’t make the necessary adjustments they needed as a woman with lived experience of trauma, and treated them as if they were hysterical, ‘just that nutty woman’. They told us, ‘The housing association know their clients have issues and don’t make adjustments for them. You shouldn’t have to explain your vulnerabilities every time you speak to your housing association.’ The Scottish Mental Health Strategy should recognise and respond to the different kinds of discrimination (including direct and indirect discrimination), so that the whole range of people’s rights are upheld.
The Scottish Mental Health Strategy should include the right to access and engage with nature and green space – as one person said, ‘there is a human need to connect with nature’.
It’s important to recognise that all of these rights are intertwined – they affect one another.
Question 7. What are your views on the system-wide changes which we
think are needed?
Significant lived experience input at all levels of service delivery, and in the development of law, policy and practice* – this is important. [*One of the system wide changes being proposed]
One person suggested ‘all patients should be protected by one single law with an individual’s dignity as the prime focus on all decision making’. This would include physical health patients as well as mental health.
They also raised the issue of police involvement, comparing it with the experiences of people without mental health issues who have physical health emergencies – ‘An individual with complex mental needs who present in public are more likely to end up in a police cell than an ambulance.’
There is very little reference to the police in the overall proposals, and what role they would play under new legislation.
Chapter 3: Supported Decision Making
Question 1. What are your thoughts on our proposals for a wide ranging supported decision making scheme?
Independent Individual Advocacy:
There should be a right to independent individual advocacy to help people with lived experience understand their rights and options and communicate their views about any issues which affect their rights.
Having this right, one person said, would help independent individual advocacy ‘become part of the culture. It would normalise it, it would become something which is seen as accepted and acceptable. Not something which comes with a label. People would know that it was available when they needed it.’
They also raised the issue that there are people who could be supported by independent individual advocacy who are not. For instance, Long Covid, ME and perimenopause can all affect somebody’s processing skills.
Currently if somebody is being detained under the Mental Health Act or an order is made for compulsory treatment, they do not have access to independent individual advocacy until after the decision has been made. They should have access to an individual advocacy worker at an earlier point, as soon as there is a possibility of a compulsory legal intervention, so that they have advocacy support during the decision-making process which happens. The referral should happen automatically, with them being able to say yes or no to having an independent individual advocacy worker at that time. One person said of the difference this would make – ‘It could ground you and give you some kind of focus.’
Advance Statements:
There was generally support for looking at Advance Statements and seeing how they can be improved, particularly being able to use them in times and places which don’t relate to compulsory intervention under mental health law. However, individual members of the group raised some questions and issues about the proposals.
The name ‘Statement of Rights, Will and Preference’ could be confusing – ‘Will’ makes you think of a legal will when somebody dies. ‘Please think of a user-friendly title which people understand.’
Who is going to support somebody to create this? Many people don’t have access to somebody like a social worker, support worker or advocacy worker who could help them with this.
Where is it being held? Who is able to access it?
Will Statements be something which are only completed by those who have a certain level of education or communicative ability?
If assistance is provided by a carer or member of staff, how is it ensured that the assister’s views do not overly influence the individual?
One person asked – ‘What happens if a patient’s will is to die by suicide? Or if an addict’s wish is to ensure a constant supply of their addictive material? Does the state override these preferences under the heading of ‘we know better’, even if the statement of will has been made at a time of good health by the individual?’
Named Persons: One person was interested in Named Persons and said you should have a right to a Named Person.
Chapter 5: Human rights enablement
Please use the space provided below for any other comments you would like to make, relevant to this chapter.
The group found it very difficult to respond to the proposals in the consultation paper around the Human Rights Enablement and Autonomous Decision Making Test. The proposals are complicated, and there is still a lot of ambiguity. There is talk of Support Decision Making, Human Rights Enablement and the Autonomous Decision Making Test working together as a ‘suite’, but no indication of what this would actually look like in practice.
Chapter 6: Autonomous decision making test
Question 2. We seek your views on the concept of the test of autonomous decision-making, distinct from a capacity or SIDMA test.
The group found the autonomous decision making test concept difficult to understand, and therefore difficult to respond to. Feedback which the group were able to give:
It needs to be made clearer
The Urgent Situation approach sounds old fashioned
Any decision which is made which goes against somebody’s wishes, should be reviewed as soon as possible
Putting the Non-urgent approach in once the crisis is over, would be helpful.
Question 5. Please use the space provided below for any other comments you would like to make, relevant to this chapter.
The group found it very difficult to respond to the proposals in the consultation paper around the Human Rights Enablement and Autonomous Decision Making Test. The proposals are complicated, and there is still a lot of ambiguity. There is talk of Support Decision Making, Human Rights Enablement and the Autonomous Decision
Making Test working together as a ‘suite’, but no indication of what this would actually look like in practice.
Chapter 8 Accountability
Question 4. What are your thoughts on collective advocacy groups raising court actions?
What are your thoughts about creating a way for collective advocacy groups to alternatively escalate unresolved human rights issues to an identified scrutiny body?
The group felt that both these options should be available (court action and being able to escalate an issue to an identified scrutiny body). You need to be able to choose so you can get the best outcome.
Question 5. Please share your views on our ideas about why and how we think collective advocacy should be strengthened.
The group felt it would be a good thing for there to be a duty on the Scottish Government, NHS boards and local authorities. That should ensure that collective advocacy happens. It is right that service planning groups engage with and involve collective advocacy groups. This doesn’t always happen. It is important that people are represented and have a voice. As one person put it, ‘Things shouldn’t be done behind closed doors. It should be open and transparent.’
Question 6. Do you have any suggestions to make the scrutiny landscape for mental health services more effective?
When you try to raise an issue, you are often signposted somewhere else. You speak to one body and are told it’s another’s responsibility. It would be an improvement if there is more co-ordination of the different bodies.
People with lived experience of mental health issues should be involved in service regulation.
Question 7. What do you think about the ways in which we think the role of the Mental Welfare Commission should be extended?
They should strengthen the requirement to include people with lived experience in the work and governance of the Mental Welfare Commission, and engage with organisations representing people with lived experience. This would be an improvement.
Evaluation
Feedback on consultation –
There was a lot in the consultation paper which was ambiguous and complicated, and difficult for our group members to respond to. The Summary was a little bit better in places, but was still challenging. It also left out some important information which was contained in the full consultation paper. More effort could have been made to present the proposals in a more accessible way and give examples of how the proposed ideas would work in practice.
