What Matters to You Follow Up - Benj McElwee

Posted by See Me, 28 June 2017

Today is the post event meeting for ‘What Matters To You Day’ which took place on June 6th. Our Health and Social Care Policy and Practice Officer Benj discusses what was spoken about on the day, and his thoughts for the future.  

 June 6th was an extremely dreich day. And Scotland was buzzing.

Despite being half an hour late, and soaking, I was delighted to be at a meeting for What Matters to You Day to hear what matters to people in mental health and how they want their rights to be recognised. Also present were the Minister for Mental Health, Maureen Watt MSP, Joanna Swanson from Scottish Government, and representatives from AdvoCard, Edinburgh Carers Council and Royal Edinburgh Hospital Patients Council.

No surprise that the importance of advocacy for people with mental health issues was raised, particularly at times when they are at their most vulnerable, for example, upon entering hospital, or when going through transitions.

It was felt that advocates can speak on the behalf of individuals and be listened to. Everyone with a mental health condition is entitled to advocacy services under the Mental Health (Care and Treatment) (Scotland) Act 2003.

Named Persons, the people who can look after the interests of someone who has been detained under the Act, are also entitled to Advocacy and Legal Services, and everyone agreed it is important that hospital staff are aware of this, and promote this right. It was also brought up how important it is that people‘s care and support is continuous and based on what they need, rather than what can be provided by each service, whether that be children’s services, adult services or into elderly care.

Chris Mackie from AdvoCard said that lived experience is essential to reforming and shaping the work that advocacy services do. Advocard’s board itself is made up of around 50% service users.  But Chris said that staff often they do not have the first-hand experience of using the services their clients do, making it harder to represent them. He felt that it was particularly important that this ethos should be seen as essential across the health and social care system.

Social Security Experience Panels were seen as having exemplary potential in valuing and listening to lived experience in a meaningful way. Following on from this, Maureen Watt spoke passionately about ensuring the Scottish Government uses its newly devolved social security powers to get it right first time with the new system, and stop any potentially tragic consequences.

The People’s Conference in Edinburgh was brought up as an example of communities getting together to talk about key issues, including how people want to be supported through the welfare system. One thing they discussed was that people felt it was inappropriate for their GP to be corresponding with DWP and not their psychiatrist or CPN, as GPs have limited knowledge of their care plans. Thus the importance of utilising lived experience knowledge to influence future design and delivery of Scotland’s new social security agency is apparent.

Another message that Chris was keen to emphasise was that he felt that Scotland was forward thinking in terms of human rights, promoting personal outcomes and the What Matters to You approach, and independent advocacy.

Adults with Incapacity came up as a topic, with people saying that often the assumption of incapacity can lead to delayed discharges, and care packages not being forthcoming. As good work is already on-going in NHS Lothian and Edinburgh HSCP with the Adults with Incapacity pilot, it was suggested that perhaps it may not be necessary to revise the legislation as a priority (as set out as an action within the Mental Health Strategy).

Patricia Rodger spoke of the importance of Advance Statements and Personal Statements as a way for people’s preferences to be heard. Dianna Manson, who is the chair of the board at Advocard, told a powerful story about how within her statement there is a strong emphasis on music (particularly Chopin’s Nocturne, as she used to play it on piano when she was younger), and getting out into the garden. Unfortunately these had not been read on one occasion which led to the situation escalating to a situation that resulted in Dianna being sectioned (calling out the psychiatrist, and the mental health officer, etc.) whilst causing her a lot of distress. Advance Statements emphasise the importance of understanding personal desires and preferences.

Indeed, the importance of listening was further emphasised by Dianna’s story about how this will be the second election that she has missed out on her right to vote, due to her deteriorating physical condition meaning that she is unable to sign her postal vote consistently.

Maureen Watt mentioned issues of hospital dependence – and the political tensions inherent in moving towards community-based services. Dianna did say that “hospital can be a sanctuary when very ill, but we need to ensure that it doesn’t envelop us”. Dianna also said she felt that family and peer support and sharing time, space, and stories with other people with lived experience was beneficial to mental health.

Martin McAlpine, from the Royal Edinburgh Hospital Patients’ Council, said transitions between hospital and community are a crucial point for there be advocacy, as this is often when people are at their most vulnerable. Dianna felt that this was also the ideal point to promote and support the writing of an Advance Statement.

She also brought up the issue of GP prescribing, and how often the patients will only feel like an appointment has been successful if they leave with a prescription.

We also discussed the idea of the ‘hand on the door’ syndrome, and that people often only reveal the real reason they see their GP as they are leaving. It was agreed that change is needed so people feel confident to speak about what is concerning them.

This is why social prescribing, and having places to access formal and informal support, as well as activities that support wellbeing, within communities, is such an important culture change. We need to ensure that there are places for people to get help, that people’s social and economic circumstances don’t have an overly detrimental effect on their mental health, and that there is adequate social security support when people need it. We regularly say that it is okay to ask for help and speak about your mental health. But when people do, they need to get the help they need. As the stigma around mental health lessens, people will need to feel that talking about their mental health is worth it.

Click here to read more about What Matters To You Day.