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.

Shared Power - the training

How to use your lived experience to help in the planning and delivery of 

health and wellbeing services in Powys

Late last year the Health & Wellbeing team at PAVO launched Shared Power - An Introduction, an animated video, as a training tool for individuals who want to use their experiences of health services to help shape future services. The film delves into the different types of power, and how they interact with each other, when service user and carer representatives attend partnership board meetings in Powys.

The film is also aimed at those working in services so that they can avoid some of the barriers to co-production. Co-production means service users and carers work together with health professionals to design future services that work better for everyone. We received some excellent feedback about the film at the time.

Then, just a few weeks ago, came the perfect opportunity to show the film again - at the latest Shared Power face to face training session at our Ddole Road offices in Llandrindod Wells. Delivered by Owen Griffkin (Mental Health Participation Officer) with support from Sue Newham (Health & Wellbeing Engagement Officer), the training aimed to build the confidence, knowledge and skills of participants. Some of those attending were already volunteering as citizen or individual reps, and the training aimed to help them participate effectively in the planning and reviewing of services with public bodies.

Citizen reps volunteer their time, energy and passion to make a difference for others and to the services we receive, and are helping influence change at local, regional and national levels. Some of the participants are citizen reps on the Powys Mental Health Planning & Development Board and the Talk to Me 2 (Suicide & Self-Harm Prevention Forum), whilst others regularly sit on the Powys Regional Partnership Board.

Learning opportunities on the day included:

• How to influence positive changes in health and wellbeing services in Powys.
• Understanding the theories underpinning service user and carer involvement in planning services.
• Gaining practical experience of how partnership boards work with service users and carers in meetings.
• Recognising barriers to participation and how to overcome them.
• Finding out about current opportunities and how to apply for them.
• The opportunity to learn from current service user and carer representatives who sit on Health and Wellbeing Boards about their experiences.
• Learning assertiveness techniques and how to prepare for meetings.
• How to share personal experiences and avoid ‘trigger points’.
  
  

Here are some highlights from the day’s training.

Co-production demystified 

As a citizen rep, you are an equal partner with other professionals in the room. You are an expert by experience. But how do you gain the experience of other people and take their stories to a partnership board?

Owen updated the group about the work of the current mental health representatives, who regularly go out into the community at Meet the Rep events to listen to people’s voices about mental health services.

One of our experienced reps, John, spoke about how important it is to find out what is happening in the rest of Wales and about being aware of current mental health legislation. “Preparation is key! Ask yourself what are some of the key messages you want people to hear.”

John also described some of the resources available to people who want to engage in a co-productive way. The Co-production Network for Wales is a good starting point for finding out more.

And volunteering as a rep is a two-way street! We regularly hear that taking on the role “does improve confidence and help with personal recovery.”

Meetings - with remarkable people

Even introducing yourself at a meeting can be hard when in a room full of strangers, especially when most of them are there in a professional capacity. “A few years ago asking who I am would have been a really distressing question as I thought I was a nobody!”

Participants were introduced to Imposter Syndrome - it might feel daunting to be at a partnership board meeting, but as a rep you probably deserve to be there more than anyone else. “You are the most valuable person here,” someone was told at one meeting.

Everyone in the room is equal. Those working as heads of service for the NHS, or other statutory bodies, may be constrained in their work roles as to exactly what changes they can bring about and when - but they are people too. They may have a mother with dementia, a nephew who needs care, a friend struggling to access services…

As someone pointed out, “Town councils, health boards and councils are slow moving, which can be discouraging, but once they get going in the right direction they are hard to stop!”

Assertiveness is key - and learning the difference between being passive, aggressive and assertive an important skill. As a rep you need to think about being:

• Proactive about what you want to say.
• Confident and engaged.
• Self aware and aware of others.
• Sure your needs are met and that you are heard.
  
  

Hotspots, triggers & flashpoints

Participants spoke about their own triggers. These included being talked over, being told that there was not enough money, “mansplaining" and not being listened to.

One said, “I used to get in a tizz when people didn’t listen and I would storm out crying, but nothing good came from that!”

“You need a strong assertive Chair so that the meeting does not go off track and any problems can be shut down.”

“There will always be quiet people - it’s about managing a meeting to let all voices be heard.”

Dealing with difficult conversations

There was some very interesting group debate amongst the participants about what to do around some specific tricky scenarios which Owen had set up.

“Health staff are there for you. It’s about having the confidence and assertiveness to say, ‘I respect your views but I don’t agree with them.’”

“Ground rules are important to set the tone for the meeting.”

If there is a lack of respect someone suggested saying: “I have respect for your professionalism, so please have respect for my lived experience.”

The mock meeting

To round off the training session, Sue chaired a mock meeting designed to put into practice all the learning from earlier in the day. It turned out to be an extremely interesting and valuable exercise.

All those attending agreed that they had benefitted hugely from Shared Power training, both from the learning and also the opportunity to network with others with a similar role.

And finally…

Would you be interested in joining these citizen reps to take grass-root views and opinions to local board meetings where service providers can find out what is working and what needs to change? For further information about becoming a citizen rep, in the field of mental health or health and social care, just get in touch with us by emailing owen.griffkin@pavo.org.uk or ringing 01597 822191.

The next Shared Power training session will take place on 13 September 2023. 

Do get in touch with Owen if you would like to sign up.

Shared Power training - your chance to make a difference!

Sarah Dale, John Lilley & Rhydian Parry - Mental Health Individual Reps

Do you use health wellbeing services in Powys? Do you ever think about using your lived experience to make a positive difference to the way these services are designed and delivered?

If the answer is yes, but you’re not sure about how to get involved, you could well be interested in a full day of free training around this important area. Our Shared Power training will run on Wednesday 8 February at our Llandrindod Wells office.

We spoke to PAVO’s Participation Officer Owen Griffkin about why Shared Power training is important and the opportunities it may bring to people who attend.

Who is the Shared Power training for?

It’s for anyone who uses health and well being services in Powys and feels like they could use their lived experience to help plan and deliver these services.

What will people who attend get out of the training?

We will be looking at how health and wellbeing services are planned in the county, and the importance of the voice of the people who use these services in helping to make sure the services are run in the best possible way.

People might not know that their experience can be massively important in helping to make health provision better and there have been some big changes over the last few years that have been made because of what issues people have raised.

It can be quite daunting for people to share their stories, which can sometimes be traumatic, so we will look at how to share their experiences. There will be lots of practical exercises, and also we will talk to some of the current service user and carer representatives who sit on the partnership boards responsible for making decisions around health and wellbeing.

What can people do with the knowledge they learn?

A lot of the subjects covered will help with people’s everyday lives. We will have some assertiveness training, and look at how to prepare for meetings and confidence building. We will also look at discussing difficult subjects that can be quite personal to someone.

There will also be a chance to see what current opportunities there are in Powys for people to get involved and make a difference straight away. We try to have as much fun as we can whilst learning, and we will make sure there are lots of practical activities to try out what we are teaching.

Why is this training important?

The Well-being of Future Generations Act in 2015 made it a requirement for Welsh public bodies to involve the people who use, or who care for those who use, health and well-being services. The more people who feel confident in getting involved in this decision making, the better the services will be for anyone who has to use them.

People who have attended previous training sessions have gone on to help make really positive changes in Powys and Nationally as members of health and well-being partnership boards , volunteers for Powys Patients’ Council and leading awareness sessions for social care staff on issues important to them.

There are many more opportunities now to get involved than there were before COVID, and health services are always looking for people with lived experience in lots of different roles.

The people we work with in participation at the moment all say how much it has improved their own well-being because of their increased confidence and self-worth so I can really recommend getting involved and this training will be a great place to start!

If you want to find out more about the Shared Power training you can email owen.griffkin@pavo.org.uk

Or, you can book your place online HERE.

You can read more, and watch a video, about the concept of Shared Power, 

on our recent blog post Shared Power - an Introduction.

A look into Borderline Personality Disorder (BPD)

© Sarah Dale

Sarah Dale

Sarah Dale is a citizen rep in Powys – an unpaid volunteer who sits on the Powys Mental Health Planning & Development Partnership to share the voice of lived experience. As a citizen rep Sarah previously sat on the Wales Mental Health & Wellbeing Forum (formerly the National Mental Health Service User and Carers’ Forum).

Sarah has also worked incredibly hard over the past few years as a regular contributor to the Engage to Change group, which is a sub-group of the PMHPDP. This group was 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 feed back on resulting change to people using services."

And during the Covid-19 pandemic Sarah has also created and delivered a hugely valuable training session on Self-Injury Awareness to many of those working in the provision of statutory mental health services in the county. Sarah is absolutely passionate about raising awareness of mental health issues and brings an honesty and openness to the work which allows greater understanding for all those watching / reading / exploring more about these issues.

© Sarah Dale

Sarah's experience of Borderline Personality Disorder (BPD)

Sarah's latest project is an indepth look into Borderline Personality Disorder to promote during Borderline Personality Disorder Awareness Month this May.

"You are probably wondering... "what is Borderline Personality Disorder? And you are not alone. This is the response I get when I tell people I have BPD, and yet I still haven't been able to accurately explain what the disorder is, and how it affects me. 

The reason you probably haven't heard of the disorder is that most people with (BPD) have experienced a lot of stigma. Often being described as 'manipulative', 'attention seeking' and 'incurable'. You have probably seen over the years, celebrities opening up about their depression, anxiety or bipolar disorder, thus more people are speaking up about their own struggles.

However, no one wants to talk about the more 'scary' or 'shameful' issues like self-injury, eating disorders, psychosis and personality disorders."

After exploring What is BPD? Sarah considers why it has this particular name, what it's like to have BPD, some of the feelings that people with BPD experience such as extreme emotional instability, fear and abandonment, and people's struggles with a sense of identity. Sarah then turns to the positive side of BPD and explores the empathy and compassion that people with the condition experience, plus an often increased creativity. To finish off Sarah debunks some of the commion BPD myths, such as that people with BPD are incurable and / or attention seeking.

You can read the whole piece, A Look into Borderline Personality Disorder (BPD), on our Powys Mental Health website.

If you have any queries for Sarah, or experiences to share, then do pop them in the comments' section below.

© Sarah Dale

Read more from Sarah

Sarah has written for this blog previously on:

The Wales Mental Health & Wellbeing Forum – an update

Together for Mental Health consultation - a Powys view

On the Experts by Experience panel

And on the PAVO Health & Wellbeing blog:

Self Injury Awareness 

You can also catch up with Sarah on her Facebook page - Sarah Mental Health Rep.

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.

Powys Dementia Network - first online event!

by Sue Newham, Health & Wellbeing Engagement Officer

It was great to have 26 people attending the online Dementia Network event on 15th July. It seemed to go very well. 20 people filled in the post event evaluation and said it was either excellent or very good. Three people tried but were unable to attend because of technology issues.

People started by showing an object that linked with their lockdown experience. Gill used a pickaxe to create a new flowerbed on a steep slope and Mark's bucket full of nails, bolts and DIY bits was finally sorted out during lockdown!

These videos featuring people living with dementia and their carers were shown:

Life in Lockdown (6.5 minutes)

In 'Life in Lockdown' four people living with dementia speak with Dr Jennifer Roberts from the Dementia Services Development Centre. They talk about both the difficulties and and the upsides of Covid isolation. You can find out more here.

Yn 'Life in Lockdown' mae pedwar o bobl sy'n byw gyda dementia yn siarad â Dr Jennifer Roberts o Ganolfan Ymchwil DSDC. Maent yn siarad am anawsterau ac anfanteision ynysu Covid. Gallwch ddarganfod mwy yma.

Frannie's lockdown story (10 minutes)

Shirley's lockdown story  (5.5 minutes)

f

These videos by Dementia Matters in Powys and their service users were shown:

DMiP Service User Review (8 minutes)

What we offer - DMiP Staff (4.5 minutes)

What people thought about the online Dementia Network

Comments about what people liked about the event included:

“Virtual friendship and enthusiasm of everyone.”

“I felt that people spoke very freely, despite or maybe because of the online setting.”

“Got a chance to exchange more ideas than we have at physical meetings.”

When asked about what to change for next time, more discussion group time was mentioned, along with having more people with dementia organising it. Most people felt that the length of the meeting was about right.

People discussed “The Good, The Bad and The Ugly” of the Covid 19 crisis

Good

• Many people enjoyed having more time for gardening, hobbies and spending time with family.
• Technology was mentioned as a learning point and virtual meetings as a good way to keep in touch with family and friends. Many felt they had got to know people better through using virtual meetings.
• People expressed pleasure in being at home, seeing more of partners and immediate family.
• Some people who were working were happy about working at home and travelling less, feeling that less travel gave them more time to meet clients’ needs.
• People working or volunteering for third sector organisations had seen a big increase in people volunteering, as well as in referrals.
• People mentioned strong community spirit as a real benefit of the situation.
• Getting outdoors, including gardening was enjoyed by many and felt to be good for wellbeing.
• A few people mentioned learning new skills or doing online courses.

Bad – things which were difficult or frustrating, but bearable

• Cancellation of planned trips or events.
• Shielding, social distancing and unclear Covid rules.
• Reduction of some statutory services and support, so there was not the same level of support coming into the home.
• Trying to get supermarket delivery slots was frustrating for many, as was shopping in person for those with sensory impairment.
• Being confined at home with several others was a frustration for some.
• The lack of family visits or not seeing family was difficult, including those living in care homes or shielding.
• Greater pressure on carers affected both those with older relatives to care for and parents looking after children. Many didn’t get any time off and found they were needing to take a lead where other services had been involved before.
• Technology was less of a positive aspect where poor internet was involved, and affected both service users and some staff working from home. Some people struggled with confidence around using tablets, laptops or smartphones to access meetings.
• Not being able to go to funerals upset some participants.
• For some people, having to carry on working outside the home put them under a lot of pressure.
• Service providers expressed sadness and frustration about clients they had not been able to connect with. They felt that for some services, you need face to face to be able to really understand the support that is needed.

Ugly - things that were very difficult to cope with

• Lack of tolerance and people getting angry.
• Lack of physical contact and hugs.
• Fear of the unknown and future economic uncertainty.
• Not being able to visit family and elderly parents.
• Had toothache all lockdown and no services to go to.
• Not being able to visit dying loved one.
• Those living with dementia have suffered from lack of contact and their condition has deteriorated through lockdown.
• Increased pressure on carers.
• It was difficult to accept the isolation that some clients were facing.

The second discussion group was about things we would like to “Keep, Chuck or Change” as we move forward

Keep

People wanted to keep the increased use of technology for keeping in touch, the closer community spirit and support, the better work/ life balance and the networking between grass roots groups and services.

Chuck

• The virus! We all hope for a vaccine.
• Queues.

Change

• Technology was felt to be very beneficial, but there needs to be more user friendly tech, more training and support for those who lack confidence, more emphasis on people being equipped for virtual meetings and better broadband coverage so rural communities don’t get left behind.
• There was concern for people with dementia who also have sensory loss, and the need to develop more proactive ways of reaching out to them and supporting them.
• The expansion of Dementia Friendly Communities across the county would help to raise awareness of dementia. People living with dementia may forget about social distancing or forget to wear masks.
• There is a role for “crisis experts” to be employed to help people deal with sudden, traumatic and unexpected crises. In a crisis, it’s difficult to make sense of all the information and to know how to access support.
• People felt that non-digital information such as leaflets, and mobile services such as Post Offices and Libraries were an important lifeline.

If you didn't attend this Dementia Network meeting and want to be included on the mailing list, please contact Sue Newham by emailing sue.newham@pavo.co.uk

Thanks to Dementia Matters in Powys for providing the technical support for the event and for liaising with members to get their input. DMiP staff have worked with PAVO to ensure that this event is relevant and informative for those living with dementia, their carers and organisations offering support. Diolch yn fawr.

Life after alcohol addiction - Russell & Kaleidoscope Project Powys

The headline news in the County Times earlier this year read: “Champion boxer turns life around after fight against addiction”.

Russell Pearce from Welshpool is the boxer behind the headline, and following his own recovery journey from alcohol addiction has recently taken on a new role as an Engagement & Support Worker with Kaleidoscope, working to support people who have a drug and / or alcohol dependency in Powys.

We asked Russell to tell us more about his recovery journey, his role at Kaleidoscope and what support is available in Powys for people struggling with drug and alcohol misuse.

Tell us more about the work you do at Kaleidoscope Powys

I’m the first point of contact for most people when they first come in. I do the referral for them and the initial assessment. Referrals then go to the team meetings where people are allocated to a key worker.

When I do my assessments of people I always tell them a bit about my background because they are often nervous or embarrassed. So I just tell them straight away away – don’t worry, I came through Kaleidoscope. And If you’re worried about any of your questions, I’ve answered them before, nothing you say will shock me.

At the moment the key workers are really busy so I’m taking some of the less problematic clients. Hopefully I will go through the training and become a key worker myself.

Across the county, Kaleidoscope supports more than 450 people, and operates four projects.

What led you to this particular role?

I started boxing professionally at 18 after winning a British Championship fight in my teens. I was representing Wales, but my dream career developed into a means of funding my alcohol habit. I would take on difficult fights, knowing I’d get paid whether I won or lost, and then I’d spend the money on alcohol regardless of the outcome.

My addiction to alcohol started as seemingly harmless but it got to the stage where I was drinking too much and much faster than my mates. It was a slippery slope. Before I knew it I was relying on alcohol to feel I belonged – to be outgoing, funny, one of the lads – it just got worse from there.

Drink took over my life, leaving me alone and desperate to continue funding my habit. My desperation reached a peak when I could no longer afford to sustain my lifestyle. With my addiction still strong, stealing alcohol felt like my only option.

Then I came into contact with Kaleidoscope after being arrested for stealing alcohol. People are routinely referred after arrest, but then it’s up to them to follow up and probably 90% of referrals never engage with us, but I decided I’d had enough. Kaleidoscope got me into rehab and that was the start of my recovery.

Russell (in the pink tutu!) at his stag party

Why do you think it is important that people working at Kaleidoscope have lived experience of substance misuse? 

I think it puts people at ease. If they tell me something, it’s likely that I’ve had that same kind of feeling. You could have the same emotions about heroin, just because it’s a different substance it’s the same kind of thought process behind it really. It’s that common knowledge thing – you learn football better off people that play football basically.

Why do people start to become dependent on drugs and alcohol?

It can be anything. There are people who have been through trauma and manage not to go down that road and some people just do. When I was in rehab we used to have our group chats. There were lawyers there who had the occasional lunch-time drink that just got out of control and then there were the people who had experienced severe trauma in their lives.

A lot of the time it’s unseen circumstances. People only see the addiction, they don’t see the background of it, and it can be anything from family fall-outs to relationship failure. Maybe a couple broke up, they’ve only been together for a month, and one partner is really depressed about it and just chose to do the wrong thing. Alcohol, or substance misuse, is just a way of coping with things. So some people have the gym, others go for a run. Others just turn to alcohol and / or drugs.

How does drug and alcohol misuse impact on people’s mental health?

It’s really hard to deal with mental health when you’re drinking because if all you’re doing is to use drugs or alcohol to suppress the kind of emotions and feelings that you have then all that you’re doing is pushing that down. Things can get out of control really really quickly and that’s what people don’t understand. You can put things off, like bills and debts, and things snowball and before you know it you’ve got this weight on you plus the addiction. I used to deal with all my problems through alcohol. I’d end up stealing alcohol and then you have the stress of – have I been seen, or will I get caught?

It’s all of that and on top it’s people’s opinions of you as well. I know from experience that the people that come into Kaleidoscope, or any kind of drug and alcohol agency, aren’t bad people. Once you sit down with them you realise they’ve had a bit of bad luck in their lives. It’s hard to change people’s opinion on that. But they are actually good people.

On popular TV soaps, street drug people or alcoholics, they’re just portrayed as always doing bad things. Even celebrities are shown when they’re looking really haggard after a night out, you don’t see anyone after they’re recovered. And I think that’s why a lot of people don’t come into the service. It’s actually embarrassing to admit the problem and ask for help.

How might the Covid-19 pandemic have impacted on people’s unhealthy use of alcohol?

I think people are drinking more unknowingly. People have been furloughed and they can drink during the day and not really think anything of it. Then their intake slowly increases. It’s the same with the drug side of things. People might have used drugs at the weekend but now they can get away with doing it during the week too.

And I think Covid is a lot of stress for people too. I think that’s what it boils down to – just people’s stress and how they have dealt with it. I know some of my clients have really struggled through it. There are no barriers in place, people have time on their hands, and no one really knows when it’s going to end. You have all day to worry about your bills and some people have had bereavement to cope with too. Then a drink is going to seem very appealing.

Russell on his wedding day

What barriers might prevent people from seeking support and how do you work to overcome those?

Again, it’s stigma. People see it as embarrassing to admit to this kind of problem. And also not recognising it as a problem. If you ask ten people on the street – do you know what kind of daily alcohol limit you’re supposed to stick to in a healthy world, 8 out of 10 people wouldn’t know the answer.

We get people in to Kaleidoscope through just being friendly. Everyone loves coming into our office. We try to be as normal as we can because we know it’s daunting to come in and admit you have a problem.

Are there particular issues which arise in rural areas like Powys for people with drug and alcohol dependency?

I think a lot of people struggle with rural life. It makes sense – whether they’re cut off from family and friends in the middle of nowhere, so the loneliness, or just because of the way they live and problems with public transport, which means it is difficult for people to have regular access to our services. One good thing that has come out of the pandemic is that we now understand that sometimes phone contact can work.

And now people can drink at home, and when they go out shopping the first thing they see in the supermarket is a big pyramid of crates of beer on sale – which is pretty hard, especially for someone in the early stages of recovery.

Are you working differently, and if so how, to support people due to Covid-19?

So, we’ve been working from home since March now. We are providing phone support to clients. Some of the SMART meetings are taking place online in the evenings with one of my colleagues. A SMART meeting is from UK Smart Recovery, it’s like Alcoholics Anonymous but without the religious side. It’s been nice for some clients to join so they can see other people, especially as some live alone.

From 7 July we have partially opened our doors on a part-time basis in Newtown, Llandrindod Wells and Brecon.

Russell with his daughter

Do you provide support for the families of your clients and if so what?

We will speak to people if they’re worried about their son or daughter or partner – we can have a chat over the phone but obviously everything is confidential so we can’t tell them anything about the client. We normally point them in the direction of Al-Anon – an organisation set up to support the family and friends of alcoholics. 

Which other organisations do you work closely with to provide support to people? 

We do work closely with the Community Mental Health teams across Powys.

What is the most challenging aspect of the job?

Not being able to help everyone. I think you can’t come into this job with rose-tinted spectacles thinking you are going to change the world and everyone’s going to recover. I think everyone has their own journey – it’s just finding different ways of working with each individual.

One of the hardest things is when people are rude to people with addiction. If by telling my story, here, or on TV and in the paper, I can change a few people’s opinions on addiction, I’d really like that.

And the most rewarding?

Just people saying thank you really. They come into Kaleidoscope, like I did, pretty broken. And seeing them make a conscious effort to change their life – because I know how hard it is to get sober – and it’s really nice and rewarding to see. Next week I’ll be taking a client to the rehab I went to which will be nice – going back. I’ve been back a few times. My best man at my wedding and my ushers were all lads I met in rehab!

And also, on a personal level, being able to tell people what I do for a job after everyone knew me as a national champion boxer who threw his career away.

What is the most valuable thing you have learnt since starting your role?

Probably that everyone’s got a story. Don’t judge a book by its cover.

When you are not working for Kaleidoscope, how do you enjoy spending your time?

I still do a bit of boxing. We’re planning a Yorkshire Three Peaks Challenge to raise money for Kaleidoscope. We had to postpone it this year because of Covid. And I’m starting to learn to play the bass guitar. And spending time with my wife, and Facetiming my daughter who lives in Poland.

And finally

Now I’m a better father, husband, brother and son. I want people to know that addiction can grip anyone, from any background.

But, there is support out there, walk through our doors and you’ll be greeted with a warm smile and a cuppa. 

Many thanks to Russell for sharing his recovery journey. You can contact him by emailing: russell.pearce@kaleidoscopeproject.org.uk or phoning: 01938 554013.

Remembering Jill Dibling

Jill Dibling in 2017 with her artwork

Derek Turner writes:

It was with a deep sense of sadness that I learnt recently that Jill had been diagnosed with terminal cancer. Three days ago, I learnt that she had passed away. My sense of sadness deepened with the fact that I would be unable to celebrate Jill’s life at The Pales Meeting House in Llandegley on Saturday 14th December 2019. It was typical of Jill that she did not want visitors, she would manage her illness, and her final days, in her own way with the support of ‘her girls’.

Jill was a pioneer in modern thinking about mental health. She not only had her own lived experience but she had ‘lived expertise’ as well. By lived expertise I mean that she learnt valuable skills from her own overcoming of the challenges she faced. It was her ability to use this expertise to the benefit of other people that makes her stand out. 

Jill helped in the founding of Mid Powys Mind and later became Chair. She was equally involved in Powys Mental Health Alliance. It was in this later participation that I had most to do with Jill. The Alliance was run entirely by people with lived experience but it was Jill who was behind the radical approach to service provision that drew on her own expertise. Jill had a quiet tenacity that more often than not won the day when others might be sceptical about what could be achieved by people who were so often dismissed as mere ‘service users’.

Jill (right) with Pat Atkinson of Powys Mental Health Alliance in 2009

It would however be wrong to remember Jill just in terms of mental health services. She was a committed artist whose work has been described as experimental. She passionately believed in the benefits for some people in the creative value of art in mental health and wellbeing. Jill would sing with the Peace Choir at the Pales Meeting House, but, if asked, Jill would probably see her role as a mother to her girls as her most important contribution.

There was a positive energy from Jill that gave us all hope. She will be missed in by all those who knew her, and her contribution to mental health services in Llandrindod, Powys and Wales, should not be forgotten.

Jill (far right) at the launch of the Powys "Yellow Book" of mental health information in 2000

Freda Lacey writes:

Jill was always someone who was open to developing and growing her knowledge. She was very involved in the lottery-funded DIY Futures project and was a firm proponent of the abilities of people to be very much co-creators of their own mental health care and treating people as experts in their own care.

I knew Jill in the capacity of my working with her in Participation, her patience and care of working with others and her openness to listening to other people’s views and her encouragement of people speaking up and asking for what they wanted. She was always supportive of me and I felt her deep care… She’d always have time for a coffee and would, in my early days, offer me guidance or knowledge of a situation or history/story that was invariably really important and valuable to know.

Jill with colleagues from Powys Mental Health Alliance in 2010

Jill undertook some Open University courses that I supported her on and certainly our discussions about her essays and her dedicated focus on learning inspired me, she was always wanting to improve her knowledge and continue to grow and learn.

Jill was a skilled professional volunteer contributing outstanding knowledge and guidance to mental health services in Powys, particularly her support of individuals coming together as peers. She was recently awarded a life achievement award by Mid Powys Mind which was very well deserved. 

I will miss her, her quiet support and the way she would invite sharing. I will miss her steadfastness and extraordinary lived experience, her gentleness and yet her solid convictions on what was right and what was needed. Her loss in respect of mental health services in Mid Powys will be keenly felt.

Letting go – a poem by Jill Dibling 

Jill at the grand opening of the Wellness & Recovery Learning
Centre on Felindre Ward, Bronllys Hospital, in 2014.

The creeper went west
With the wind from virginia.
The tall trees went south
With the wind from the north.
The gardens went wild as
The weeds became stronger -
They thrived and they seeded
And then they took hold
Of the lawns and the beds
Where the roses were growing.

Then all became clear as
Their strength was revealed.
The moss covered stones and
The fungi grew bold
On the wood of the roof and
The door and the sills.
The pools formed and swirled and
Spawned life of their own.

Then at last we let go of
The home that had bound us.
The breath of the earth and
The light could surround us
And free us to enter
That world that had found us.


Derek Turner worked for many years as a Mental Health Development Worker at Powys Association of Voluntary Organisations.

Freda Lacey is the Mental Health Partnership Manager, Powys Teaching Health Board, and previously the Senior Officer Health & Wellbeing at PAVO.