The future of the Wales Mental Health & Wellbeing Forum

John Lilley (Individual Representative, Mental Health) and Josh Beynon (Practice Solutions)

Improving mental health and wellbeing by respecting and 

empowering people to influence decision making

The Wales Mental Health and Wellbeing Forum is made up of people with lived experience of mental health issues and their friends and families. The members come from a range of different backgrounds and reflect the diversity of the people of Wales. Here in Powys John Lilley - more from him below - joins Rhydian and Sally to bring the voice of Powys service users and carers to the table.

Forum members work collaboratively with other key stakeholders to influence Welsh Government policy by using the skills, knowledge and experience they have gained within the field of mental health. They play a very important role in helping shape future mental health services within Wales.

We recently heard that Practice Solutions Ltd, the organisation which has provided support to the Forum over recent years, has been awarded the tender to support the Wales Mental Health and Wellbeing Forum for the next 3 years.

Since the Forum started working on the contract with Practice Solutions it has gone from strength to strength and a huge part of this has come from the fact that Practice Solutions staff have instilled in members that it is their Forum and they should lead the direction of the work and how this looks in the future. The members are then able to use the knowledge and experience of Practice Solutions’ staff to inform and guide them in the best way forward when developing projects.

Since the Forum started working with Practice Solutions there have been lots of exciting developments. The Forum changed its name from the National Mental Health Forum to the Wales Mental Health and Wellbeing Forum. It was felt that this better represented the Forum’s work focus - what happens within services in Wales.

John Lilley chairing a Wales Mental Health & Wellbeing forum meeting

The Forum also designed their own logo and branding which is now used on their promotional material and on their social media platforms and this enables the Forum to create a professional image when speaking to organisations.

With guidance from Practice Solutions' staff the Forum also established separate working groups alongside the quarterly meetings and these included Communications & Marketing, Future Planning & Recruitment, and Reward & Engagement. These groups enable some of the members to focus on particular aspects of the Forum such as designing a logo or their website, promoting the Forum and attending events. Proposals and ideas are taken to the main quarterly meeting for agreement and voting by all members.

Another huge part of the Forum’s growth has involved the development of the website which allows members to inform people about their work, share good news stories, promote events and publish some of the papers that the Forum has produced. The Forum has also been privileged to have members share their mental health journey through the production of digital stories. These can be extremely powerful in highlighting the issues that people with mental health face.

The Forum is looking forward to continuing its work with Practice Solutions and seeing where the future journey takes them. Onwards and upwards…!

Josh Beynon, who is an Associate at Practice Solutions, and provides support to the Forum as part of his role, says: “It’s great to be supporting and working with the forum again to improve services and put the voice of service users and carers at the heart of decision making”.

John Lilley, Individual Rep Mental Health,
 at a Shared Power training session last year

John Lilley is the expert on the Forum locally here in Powys as he has been a member for several years now. He says: “I became a Mental Health Service User Representative as I felt my experience as a service user, and as someone with lived experience of mental health issues, could help to give a voice and attempt to improve access and care within the mental health services.

“I was diagnosed with bi-polar in 2013 and before that with clinical depression as a result of life changing neurosurgery in 2000. After a three month stay as a patient in Bronllys, and attending Patients’ Council meetings whilst there, I decided that following recovery I would join Powys Patients’ Council as a volunteer. I believe this helped in my recovery and boosted my self-esteem and confidence.

“After being a volunteer for over 5 years I became a Mental Health Service User Representative in Powys in 2021. During my time as a rep I have also joined the Wales Mental Health and Wellbeing Forum to represent Powys. This national forum meets regularly and reports to the Welsh Government on issues affecting service users and carers locally. I have also been a member of the Powys Crisis Care forum which oversees the delivery of the Mental Health Crisis Care Concordat in Powys. This measures the effectiveness of how Powys deals with people in Mental Health Crisis.”

Find out more about the work of the Wales Mental Health & Wellbeing Forum.

Find out more about becoming a Mental Health Rep in Powys.

A busy summer for our mental health reps

by Owen Griffkin, Mental Health Participation Officer

The Mental Health Service User and Carer Representatives have had an enormously busy summer so far this year. I have been with them all over Powys helping them get out and about around the county.

When I first started in my role as Mental Health Participation Officer in 2017 it seemed that I was constantly out and about around Powys. Most of my work involved attending meetings or events either on my own, or accompanying the mental health reps to their meetings. Obviously lockdown meant that much of work life moved online, and one benefit of this was that lots of these work meetings continued online. This allows us to have people from all over Powys, and sometimes Wales, present at a discussion instead of having to travel to Llandrindod, or Newtown or wherever the meeting is. This is really useful in some situations, and it has allowed the reps more access to people working in Mental Health services in Powys.

Unfortunately, there was also a downside, as there was less opportunity for the reps to speak to people in communities which is the most important part of their role. That’s why it has been so refreshing to start running Meet The Rep events all over Powys, and to start attending community events with the reps. I think I have driven more miles in the last month than I did in the previous year.

Sally and Sarah at the Help & Information event in Machynlleth

The current reps - John, Sally, Sarah and Rhydian, decided that they wanted to get back out and make sure people knew who they were, and who they could speak to if they wanted to have a say in the way the Mental Health service is delivered. Therefore in June we held two Meet The Rep events in Newtown and Welshpool Ponthafren, and also attended a community Help and Information event in Machynlleth and a Pride Picnic organised by Credu at Llanfyllin Workhouse.

The reps set up stalls full of information about their roles, and spoke to people about their experiences of mental health services. There were activities as well that were relevant to the event. For example at the Pride Picnic, Sarah made some paper fortune teller origami sets. These were fun and dispensed tips on self-care as well as drawing people to our stall.

Sarah Dale said: "We as reps have been extremely busy in the north of Powys, out meeting people and discussing the work we do and some of you shared your views on the service. I believe as reps we cannot represent mental health service users and carers without gathering feedback. Every piece of information we gather does make a difference. Sometimes we may be able to help get you in touch with other organisations that may be able to help such as community mental health advocates. I understand that from the outside you may not know what happened to your feedback. I want you to know I try my very best to ensure each issue is addressed and actions taken to ensure that the service is fit for purpose.

I really enjoy organising activities for community engagement and meeting different people and networking with local organisations. I like listening to other people's experiences. Just listening can make a person in a difficult situation feel less alone, and talking to someone who has no affiliation with a specific organisation (I am just another service user) makes them feel more heard and understood, and brings that trust that we will ensure that their voice is heard. It can give people hope.

After a long break hopefully you will see us out and about again real soon.”

Sarah and Sally at the Pride Picnic in Llanfyllin

The serious part of the events was making sure that we gathered feedback from people about their experience in Powys and added these to an issues log. This issues log is then taken to a quarterly meeting with the Service Managers for Mental Health in Powys and any actions that are taken due to the feedback are noted and can be reported back to the person who gave the feedback in the first place.

Sally Houghton-Wilson said: “Having attended a few events, it's been really helpful to understand people's opinions, point of view and feedback on how they are finding the services, and what works best for them, what hasn't been helpful, and what their expectations are. It's nice to learn all about their experiences. And gives a clear indication of what's lacking within the system.”

The reps have also been continuing with their normal duties, attending Engage to Change and the Mental Health Planning and Development Partnership, which takes up a lot of their time. In fact, the reps now chair the Engage to Change meeting. (The Engage to Change group has been established to more widely promote the Mental Health Planning and Development Partnership’s activity, to proactively challenge any stigma associated with mental health and to collect service user views / experiences, co-ordinate resolution and feedback on resulting change, to people using services).

There have also been three Patients’ Council meetings where the reps listen to people’s experiences on the Felindre Ward.

Sarah delivered three Self Injury Awareness sessions to foster carers, staff from Child & Adolescent Mental Health Services’ teams and school nurses. These have been very well received and are helping to give people who are likely to come into contact with people who self harm the knowledge they need to have a caring and compassionate conversation, and not judge the people they speak to.

John and Josh at the Wales Mental Health & Wellbeing Forum in Llandrindod

It was also a pleasure for Powys to host the quarterly meeting of the Wales Mental Health and Wellbeing Forum in Llandrindod. This national group is a chance for all the service user reps from around Wales to meet and discuss what is happening in their area, and prepare reports that are sent to the Welsh Government. As Powys was the host, it fell upon John Lilley to chair the meeting. John gave an overview of co-production in Powys Mental Health services and there was a lot of approval from the group in regards to the work we are doing here.

John Lilley said: “Having attended several national forums in the past, and chairing one online during Covid, I knew roughly what was expected when it came to chairing in person. I was still a little nervous when the date came round and was grateful for Josh from Practice Solutions (who facilitates the forum) for co-chairing and Owen’s help in the regional update.

Knowing most of the attendees certainly helped calm the nerves and on the whole, I enjoyed the experience, though being a hybrid meeting I found it challenging to monitor the online screen for hands raised but with help from Josh I managed.

At times it was difficult to keep discussions relevant and on time but with gentle reminders of the agenda this became easier. Would I do it again? Yes and I also recommend people to try it. I found it a great learning opportunity and it boosts one’s confidence.”

Summer is traditionally a quiet time for the reps, a time to reflect on the year so far and plan for the future. However this summer they have really gone above and beyond what is expected of them in their roles, proving how much they deserved to receive the Outstanding Contribution award at this year's Powys Volunteer of The Year Awards.

If you would like to get involved in having your say in services, and be informed when there are future vacancies, then please fill in this expression of interest form here.

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.