The Wales Mental Health & Wellbeing Forum – an update

by guest author Sarah Dale 

Sarah Dale is a citizen rep – an unpaid volunteer who sits on regional and national partnership boards, including the Wales Mental Health & Wellbeing Forum (formerly the National Mental Health Service User and Carers’ Forum) – “the voice of lived experience”.

“I became a rep because I don't want others to have to fight for years just to be diagnosed to get the treatment they need. I strongly believe we all have the responsibility to do what we can to change and improve the mental health services that we all use.” 

In the summer of 2020 Sarah attended the latest meetings of the Forum, which took place online over the course of two days (28 July and 12 August). It was Powys’ turn to host and Sarah chaired one of the sessions. Sarah recently reported back to the Engage to Change partnership board (sub-group of the Powys Mental Health Planning & Development Board) about what took place over the course of the two days.

We had a general update and I did a long Powys update because we have done so much. There was a lot of feedback from the other reps that they were surprised how much work we actually do in Powys as reps. Someone said “now that is real co-production!” A lot of the other health boards haven’t actually done a lot during Covid, for example, having meetings or involving reps.

Then we had a quick session on the logo, looking at the new name and design. That was all approved. This was followed by a session on the Terms of Reference which were also approved, including the Easy Read version which I had gone through and amended. I don’t like the term Easy Read, I call it “Sarah readable!”

We looked at the new member roles which were also approved. Some people who have exceeded their term of office are now able to stay on in the Forum. We have other working groups – so there’s a Diversity and Equality Working Group – and we are looking at people we want to include in these groups, so we send out “About Us” emails to organisations.

A representative from Welsh Government updated us. They have asked us to become involved in reviewing some of the Public Health documents. Ministers have invested £5 million towards ending homelessness and are supporting local authorities to provide longer term housing solutions. The three regional Suicide Prevention Coordinators have been appointed and an announcement about suicide prevention grant funding will be made soon. Welsh Government is working with the voluntary sector to develop a framework for better engagement in recognition that there is not enough work in partnership with smaller mental health charities in particular.

The Welsh Government is reviewing the Together for Mental Health and Talk to Me 2 delivery plans to strengthen areas which have been particularly impacted by Covid and to review timescales for delivery on one year actions. The revised plans will be presented at the National Partnership Board and the National Advisory Group in September for feedback. Equalities is one area where there will really be a focus, along with housing and homelessness, wellbeing and public health, and financial impacts. A number of Tier 0 interventions such as online self-help resources have been established. There have been some rapid reviews to changes made during lockdown which are being coordinated by the NHS – on what works based on user surveys and staff feedback.

One thing which Ainsley Blaydon (Mental Health Strategy Lead for Welsh Government) would like is feedback about what it has been like as a “service user” under Covid so I mentioned to her that we had done a survey of people under services in Powys.

Sarah on an interview panel for mental health services at the health board

Previously I have not been able to access the Forum working groups as they have been in South Wales and I don’t like to travel because of my anxiety. Covid has meant that a lot of these meetings are on Zoom so I have been able to join a couple which is really exciting. From each health board you have two service user and two carer reps and they are automatically invited to the Forum. Because of the number of health boards in the South there feels more of a South Wales representation – sometimes it feels like we are forgotten in the North. If I was in the working groups I felt I would have more of a sense of belonging so I joined the Equality and Diversity Group because that is my strong suit and also because there is inequality in representation.

In the group they have identified people they want to join – these are people from travelling communities, those experiencing homelessness, LGBTQIA, digitally excluded and Welsh language speakers. So I asked – do you even know who in the Forum fits into these categories? I’m here, I fit into the homelessness one because I’ve been made homeless. So I made them look inwards at the start – and now I’m doing some of that work. I was assigned the LGBTQIA list, so I did a lot of Google searching on all the different groups – most of them are Facebook groups and very hard to find, which is something we need to tackle, but I have compiled a list.

When I joined the Forum I just turned up, there was no Equality & Diversity form, so I’m creating a form I’ve dubbed the “Diversity Form”. It’s optional whether people fill out the details about their gender, sexuality, race – the usual equal opportunities but extended so that we can identify specific groups like people who use Personality Disorder Services or Eating Disorder Services or have been homeless. At the end of the document we explain that we are looking for people from these specific groups to talk about their experiences if they are comfortable with that.

I then joined the Future Planning group – one of the questions they have posed is – “Why are we losing so many members? Why can’t we get people to join?” So I explained that there are a lot of people from South Wales and if you’re not from there you feel left out, plus some of the topics don’t really apply to us in Powys. 

At the last Forum meeting the special topic was “Alternative to inpatient care,” which is good but as I said it would be nice to have the basics in Powys. We do not have a 24-hour crisis team – all the other areas do. When I was an outpatient at the Child & Adolescent Unit in Bridgend I missed out on the therapies, treatments and groups that are available to people who live locally. As a Powys resident I saw two different people who came up to Powys for two days a week for half a day by comparison. So one of the suggestions I made was to make it more welcoming to people so there isn’t that divide.

Locally I’ve been invited to join interview panels which I’ve really enjoyed – I did the Suicide & Self Harm Coordinator’s role, a Harm Reduction role and a Crisis Team Practitioner. My thoughts were totally taken into consideration and it was a really good experience. 

Many thanks to Sarah for telling us about the Forum meetings. If you would like to find out more about volunteering as a mental health “citizen rep” in Powys then get in touch with us by emailing mentalhealth@pavo.org.uk or call 01597 822191 and ask to speak to Owen Griffkin.