Celebrating Side by Side Cymru - mental health peer support in Wales

Artwork by Debbie Roberts engagevisually.co.uk

In March 2019 we lived in a very different world and I attended, in person, the launch of Mid & North Powys Mind’s latest project – Side by Side Cymru. MNPM was one of four local Mind groups in Wales, led by Mind Cymru, to provide this peer support project funded by the Welsh Government.

Here at PAVO we have followed the local project closely and with much interest, as we truly believe peer support to be crucial in the promotion of improved emotional wellbeing for people in Powys. I was, therefore, delighted to be able to attend the virtual celebration of the Mind Cymru project recently to find out more about how this approach had been received across Wales.

What is peer support?

“Peer support is about people using their own experiences to help others. It can happen in a group, on a 1:1 basis and also online as well but for this project we will focus on peer support that takes place face to face in a group situation. It’s about people taking a lead and taking control very much on an equal basis. So it’s a different model from more traditional health and wellbeing models. Through peer support we can feel valued, more connected to others, and more able to take control of our lives.” Mind Cymru, March 2019

“The connection to someone who is interested in similar things to you, or someone who has been through similar experiences, is a connection of equals and really invaluable. It is insightful and totally authentic.” Mid & North Powys Mind, March 2019

Sara Moseley – Chief Executive Officer, Mind Cymru

Peer support is needed more than ever because of what has been happening to us during this pandemic. There’s a huge amount of evidence now about the mental health impact of Covid. Many, many people have been behind closed doors, really feeling low, anxious and lonely. Peer support is about the power of unlocking that through the power of our own experience, kindness and compassion. In its simplest form it’s about using our own expertise and knowledge to support each other emotionally, practically and realise that there are positive, hopeful ways through mental health difficulties.

Covid has also put some of our networks and communities under considerable strain. Younger people in particular are feeling very isolated – being cut off from usual networks has a real detrimental effect on your mental health. As well as the human stories from over the past 3 years of the project we are now in a place to come out of the pandemic stronger than we were before. We have some very practical things that we have to say to decision makers about how we build back stronger and in a way very rooted in communities, and empowering to us as individuals.

Liam Pywell – Senior Peer Support Officer, Mind

Peer support based in the community and led by people with lived experience of mental health issues can be life-changing, and that’s why we believe it should be available to people across Wales.

The project worked with 318 peer support leaders across Wales who in turn supported 3800 people in their communities. We provided over £50,000 in grants to over 221 organisations and groups. We delivered over 100 activities, including training, networking and shared learning.

The hubs facilitated physical and virtual spaces to bring people together to connect, share learning and access some much-needed resources. We wanted the peer leaders to feel more confident, knowledgeable and able to provide peer support to their community and to build on the resources such as our peer support toolkit.

Mind Cymru’s independent evaluator – MEL Research - concluded in their final report that the Side by Side Cymru hub model is an effective way to supportive community based organisations and peer leaders, and that there is a real need for these types of programmes.

The local hub offer centred around three things:

1. Training & shared learning.
2. Funding.
3. Networking opportunities.

Through the evaluation the value of Side by Side Cymru became clear: peer leaders increased their understanding of peer support and the value it provides, and their confidence to deliver improved peer support. The research tells us that peer support improves our sense of wellbeing, increases our sense of hope, and helps us to become more empowered to make decisions and take action.

We also found that peer support can reduce health care costs as people who use less mental health services are often involved in peer support. But peer support is not free – we do need financial resource to support those community groups. Finally, a range of peer support options should be available to support people from all different backgrounds and makes peer support available to all.

Lorna Jones – Peer Support Hub Worker, Mid & North Powys Mind

In a short video Lorna (bottom centre) was joined by one of her volunteers – Lynda (top right), and Bethanie (top left) a peer support leader. Bethanie attended a course with Mind after experiencing post-natal depression and went on to lead a peer support group for parents of children with additional needs. The Side by Side training helped her to be professional, and to learn about specific areas such as safeguarding. She found the toolkit really helpful to refer to for guidance at any time.

Bethanie also said that the training was particularly useful as she made connections with people who could also help her. “It was like peer support for a peer support leader.” We were working with young children but others were in peer support groups for older people who were lonely and vulnerable. We could mix together and create further networks too.

It has also been a lifeline for Bethanie’s own mental health. “It’s something to look forward to, even now with Covid we can still communicate online and it helps us feel less isolated.” The funding paid for the cost of venues.

Lynda helped Lorna massively with the training. She recalled how members of her own family had been dealt with on a very clinical basis in the past, so she felt privileged to be involved with the project which supported people at a community level. “It was great to see the range of people that attended the training – from young Mums, through the age ranges, and a lot of men including a male voice choir.” Lynda realised that they took what they had learnt to all spheres of their life, not just the areas they were representing.

Lorna said that when she read the evaluation report the one thing that really hit her was the huge area that the project had covered in Powys – right from Machynlleth in the north west to the Herefordshire border in the south-east of the county. They worked with 75 groups in total.

“People have said they would be lost without these groups to go to. Our inspiring peer support leaders gave up their time to hold these groups for no other reward other than helping others. They are the unsung heroes in our communities across Britain.”

Bethanie: “Side by Side grew me and my group. It was like the seed we needed.”

Panel discussion

Julian John, CEO of Cwm Taf Mind, chaired the panel discussion with Fateha Ahmed of EYST (Ethnic Minorities & Youth Support team Wales), Zoe King of Diverse Cymru and William Evans – the Young People’s Participation Lead at Mind Cymru. There is only space for very brief sound bites here but they give a flavour of the conversation.

Q1: What does an excellent peer support project look like (and how do you know)?

“It would include a diverse group of people with lived experience who are able to support each other and have empathy. You will see the improved progress in young people if the project is successful.” Fateha Ahmed

“Empathy has to be at the heart of a good peer support project, also coproduction. It’s all about lived experience and shared experience. To know how we did we can consider the distance travelled – how people are before joining the group and how they are since. Have they achieved life goals in certain areas?” Zoe King

“It might look different to different people from different communities / ages. The type of resources and training required will be dependent on someone’s age. It needs to be flexible and accessible, safe and rewarding for a younger person.” William Evans

Q2: What can traditional mental health services learn from community led peer support?

“Lived experience needs to be at the heart of the services they deliver.” Zoe King

“Peer support has a strong bond of friendship. A counselling service may last for 6 – 8 weeks only but friendship may last life long.” Fateha Ahmed

“Traditional mental health experiences are often too rigid and don’t treat people as individuals – young people want the emphasis to be on meaningful connections and a lot less on checklists and criteria.” William Evans

Q3: What roles do organisations like ours have in developing peer support services for the future?

“Many children and young people are fairly creative and innovative in their use of social media to create their own peer support networks. Organisations need to allow them support and resources to enable them to do that safely.” William Evans

“Organisations could connect grassroots’ groups to wider networks with similar aims and goals. Larger organisations could communicate opportunities as well and also provide training.” Zoe King

“EYST has been inviting our volunteers to share their lived experience – how they actually dealt with their anxiety and depression. The young people always say they learn better hearing other people’s stories.” Fateha Ahmed

Q4: How do we connect to the networks of community groups across Wales?

“Doing with and not for. Going into those communities and engaging with people in coproduction and finding out what solutions they have.” William Evans

“We have a community infrastructure (with village halls / groups etc) we also have a County Voluntary Council infrastructure that is supporting those groups across Wales. Is there something we need to do with our CVC partners in reaching community groups?” Julian John

“Yes, absolutely. We work with diverse groups to gain those lived experiences that we then feed back into consultations. CVCs are already well placed to do a lot of this networking.” Zoe King

“We need to find key individuals who are trusted in the community and work with them to provide the best possible service for our young people.” Fateha Ahmed

Angie Darlington, West Wales Action for Mental Health, added – “it is broader than CVCs, mental health development agencies are available across Wales to share out our peer support experiences and reach out into the communities.”

Sarah Moseley said at the end of the session: “It has been a really moving and inspirational afternoon. We want to use this as a spark to think how we sustain, build, grow and strengthen (the peer support approach). One of the most powerful things I have learnt is that there are moments in your life, or things that happen in your life, that make you uniquely ready to connect, share and give support.”

Side by Side resources

Side by Side toolkit and further information

For further information about the Side by Side Cymru Peer Support project email peersupport@mind.org.uk

You can also watch a video about the Side by Side Cymru Peer Support project.

Self-harm research project - SHARE UK - can you help?

by guest author Amanda Marchant

I'm Amanda, a PhD student and research assistant at Swansea University. I run the SHARE UK webpage, Facebook and Twitter accounts. I also work on other research projects looking at childhood and adolescent mental health, self-harm and suicide prevention. As a team we want our research to help improve mental health support. 

Reports out in the summer suggest that 1 in 4 fourteen year old girls and 1 in 10 boys have harmed themselves in the past year. Self-harm is very common but research suggests that up to half of young people who self-harm don’t receive help from anyone. 

We want this to change and for this we need your help! SHARE UK is a ground breaking study looking to learn more about self-harm from people who have experienced it themselves. We want to make a real change but we need you to help us learn about what would make a difference to you. This could be better support in hospitals, schools, anti-bullying policies, help online or maybe even some new ideas! 

The study can be completed all online and you can tell us as much or as little as you like. If you have any ideas or comments or if you would like to write for our blog then we’d love to hear from you too at shareuk@swansea.ac.uk

The UK's first self-harm research register – over 200 people strong so far! 

The most important part of any research with self-harm is real people. We can’t make change without you to tell us about your experience. We have created a register that gives everyone the chance to sign up to hear more about future research and studies that they might like to take part in. People can sign up online and we hope that this will give everyone a voice in research.

We have had over 200 people sign up already and this is amazing! Research is an important part of the push for services, government spending and how support is organised. If as many people as possible take part then we can make this push for change even stronger.

What you guys say

We’ve had some amazing feedback and ideas from you guys especially from our feedback survey where you get to write pretty much whatever you like! Here are some of our highlights:

‘There needs to be more work on the barriers to finding help for self-harm. Things could change to help people engage with services.’

‘There needs to be more community based mental health education classes. This could improve social skills, confidence and give people a chance to support one another.’

‘There needs to be more support for new mums.’

‘The topic of self-harm is very important to me and to so many people. Thank you so much for working in this field!’

The good? Not so good? Dark or not? Role of the internet

World Suicide Prevention Day brought about a lot of debate about the press and the internet and the way we talk about suicide, self-harm and mental health. Creators of content online can reach so many people and have an important role in starting conversations and reducing stigma. This doesn’t always happen though and there have been several high profile cases of online bullying, predators and other dangers conjuring images of a dark and precarious online world.

We want to know more about what you think. What’s good and what’s bad? This can help to make guidance for bloggers, internet service providers and anyone who makes content online for how best to talk about suicide, self-harm and mental health in a sensitive way.

By learning more about how people use the NHS we can help to make it better. Every time we use the health service data happens. This can be from a seeing a GP to visiting A&E or staying in hospital. This data has been anonymised and secured to be used for research.

Here at SHARE UK we want to take this even further. We are giving people the option of linking the information from the SHARE UK site to anonymised healthcare data. All the information is separated from personal details so even our researchers cannot identify anyone. The possibilities for research from this anonymised data are huge and it means that we can give extra meaning to the information collected from the NHS. This could help us make a real impact on healthcare.

To learn more we have created a Pinboard style dashboard where you can add anything you have viewed online to our media databank. Anything you upload will only be seen by you and our research team and you can add comments about sites or groups if you want to. We use this databank to look at things like quality, images and potential for harm or for support.   

Want to know more? 

We need your help to make a real difference. Your story can help make sure that in the future no one has to face self-harm alone. 

If you are aged 16 or over and would like to learn more or sign up visit www.share-uk.co.uk or email shareuk@swansea.ac.uk 

Ymddygiad gwrth-gymdeithasol a iechyd meddwl – beth mae gwasanaethau angen ei ystyried? Anti-social behaviour and mental health – what do services need to consider?

Meddyliau o brosiect ymchwil gan Philip Moisson

Thoughts from a research project by Philip Moisson

Gall ymddygiad a dargedir gan y ddeddfwriaeth ar ymddygiad gwrthgymdeithasol fod yn arwydd o broblemau iechyd meddwl (fel yr ysgrifennwyd amdano yma - efallai y bydd y cynnwys yn peri gofid i rai darllenwyr). Mae'r blog hwn yn ymwneud â phroject ymchwil yr ydym newydd ei gwblhau a oedd yn canolbwyntio ar 'bobl fregus ac ymddygiad gwrthgymdeithasol'. Bu i ni edrych sut yr oedd ymarfer cyfredol yn edrych i bobl â phroblemau iechyd meddwl y mae ymddygiad gwrthgymdeithasol yn effeithio arnynt, naill ai fel dioddefwyr, tramgwyddwyr neu dystion.

Behaviours targeted by the anti-social behaviour legislation can be a sign of mental health problems (as written about here - some readers may find the content upsetting). This blog is about a research project we have just completed that focused on ‘vulnerable people and anti-social behaviour’. We explored what current practice looked like for people with mental health issues who are affected by anti-social behaviour, either as victims, perpetrators or witnesses.

Roedd fy rhan fy hun yn y project hwn fel hwylusydd grŵp ffocws, ac roeddwn i'n un o'r bobl a hyfforddwyd gan academyddion o Brifysgol Bangor i wneud hyn ochr yn ochr â phobl eraill mewn cysylltiad â PAVO ac Unllais yng ngogledd Cymru. Mae'n hynod o bwysig i bobl â phrofiad o hyn fod yn rhan o'r broses o gasglu a mireinio gwybodaeth am y materion hyn, a chwarae rhan wrth ffurfio argymhellion ar gyfer arfer da.

My own involvement in this project was as a focus group facilitator, and I was one of the people trained by academics from Bangor University to do this alongside other people in contact with PAVO and Unllais in North Wales. It is incredibly important for people with lived experience to form part of the process of gathering and refining knowledge on these issues, and in playing a part in forming recommendations for good practice.

Yn ein cyfarfod cyntaf cawsom roi cynnig ar gymryd rhan mewn grŵp ffocws, lle bu i ni drafod un o'r senarios a baratowyd yn ofalus, a oedd yn troi adroddiadau heddlu go iawn ar ffurf hanes ffuglennol bywyd cymeriad. Ar ôl hyn, fe wnaeth ein hyfforddiant ein harwain at gyflwyno'r grwpiau ffocws a chawsom ein gwahodd yn ôl hefyd i drafod y canfyddiadau o'r ymchwil cyn cadarnhau a chyhoeddi pethau. I rywun fel fi sydd ag amser sbâr, mae bod yn rhan o broject fel hwn yn arbennig o ysgogol.

At our first meeting we had a go at taking part in a focus group, where we discussed one of the carefully prepared scenarios which turned real life police reports into the form of a fictional account of a character’s life. After this our training led us onto delivering the focus groups and we were also invited back to discuss the findings from the research before things were finalised and published. For a person like me who has spare time, being involved in a project like this is incredibly stimulating.

Yr hyn yr oeddem ni'n ei wybod o'r cychwyn yw bod yr heddlu'n aml yn cael eu rhoi mewn sefyllfaoedd amhosib wrth ddelio ag ymddygiad gwrthgymdeithasol yn y ffordd fwyaf effeithiol. Er enghraifft, efallai nad ydi'n briodol bob amser gorfodi sancsiynau sifil neu droseddol, a bydd llawer o sefyllfaoedd lle mae dyletswydd gofal yn bodoli yng nghyswllt unigolyn bregus. Hefyd, mae trefnu cydweithio rhwng amrywiaeth o wasanaethau yn aml yn anodd yn yr amgylchiadau hyn.

What we knew from the outset is that the police are often put in impossible situations in dealing with anti-social behaviour in the most effective way – for example it may not always be appropriate to enforce criminal or civil sanctions and there will be many situations in which a duty of care exists to a vulnerable person. Also, organising collaboration between a range of services is often difficult in these circumstances.

Prif amcanion y project yn gyffredinol yw deall y set o broblemau uchod o safbwynt gwasanaethau, ac o safbwyntiau defnyddwyr gwasanaeth a gofalwyr. Roedd y project hefyd yn ceisio tynnu sylw at ffyrdd y gall gwasanaethau gydweithio, a chydnabod yr hyn a allai fod yn rhwystro hyn ar hyn o bryd.

The main aims of the overall project were to understand the above set of problems from the perspectives of services, and from the perspectives of service users and carers. The project also sought to highlight the ways in which services can work together and to acknowledge what might be preventing this at present.

Drwy gyfweld ag amrywiaeth o weithwyr proffesiynol a sgwrsio efo defnyddwyr gwasanaethau a chynrychiolwyr gofalwyr yn ein grwpiau ffocws, mi gasglwyd llawer iawn o ddata i'w dadansoddi. Mae ymddygiad gwrthgymdeithasol ei hun wedi cael ei ddiffinio gan ddeddf seneddol 2014 fel “Ymddygiad sydd wedi achosi, neu sy'n debygol o achosi, aflonyddwch, braw neu ofid i unrhyw un.” 

By interviewing a range of professionals and talking to service user and carer representatives in our focus groups, a large amount of data was gathered for analysis. Anti-social behaviour itself has been defined by a 2014 act of parliament as “Conduct that has caused, or is likely to cause, harassment, alarm or distress to any person.”

Roedd gan lawer o'r rhai a gymerodd ran yn y project wahanol safbwyntiau ar hyn, ac roeddent yn pwysleisio nad oedd pethau bob amser mor glir wrth siarad am bobl fregus. Mae'r heddlu felly'n aml mewn sefyllfa annifyr wrth benderfynu sut i ymdrin efo pobl sy'n achosi problemau heb fod o'u gwirfodd.

Many participants in the project had different views to this, and emphasised that things were not always so clear cut when talking about vulnerable people. The police are therefore often in an awkward position in deciding how to deal with people who are not wilfully causing problems.

Daeth llawer o argymhellion gan ddefnyddwyr gwasanaeth a gofalwyr allan o'r project, a dyma rai ohonynt:

• Mae ar sefydliadau statudol angen gwybod mwy am waith da'r sector gwirfoddol.
• Mae ar asiantau angen cydweithio i helpu'r unigolyn mewn angen, yn hytrach na chael ateb wedi'i ddiffinio ymlaen llaw wedi'i seilio ar label, h.y. ‘sgitsoffrenig- angen meddyginiaeth.’
• Dylai'r heddlu a thimau iechyd meddwl gydweithio mewn timau blaenoriaethu (neu triage) a dysgu swyddogaethau'r naill a'r llall.
• Mae Eiriolaeth Iechyd Meddwl yn hanfodol.
• Mae angen cryfhau hyfforddiant i heddlu yng nghyswllt gofid a gwrando.
• Dylid defnyddio gofalwyr ac aelodau'r teulu bob amser gan fod ganddynt lawer o wybodaeth. Dylai defnyddwyr gwasanaeth a gofalwyr bob amser fod yn rhan o'r cynllunio a gwneud penderfyniadau.
• Mae cydymdeimlad, parch ac urddas wrth ddelio â phobl i gyd yn hollbwysig
• Mae tai a ffactorau cymdeithasol eraill yn bwysig iawn.
• Mae'r system cyfiawnder troseddol yn amhriodol i bobl mewn gofid difrifol
• Dylid ceisio cael atebion tymor hir yn hytrach na mesurau sy'n datrys pethau'n gyflym ond dros dro.

There were many recommendations from service users and carers that came out of the project, and here are some of them:

• Statutory organisations need to know more about the good work of the voluntary sector.
• Agencies need to work together to help the individual in need, rather than have a pre-defined solution based on a label, ie ‘schizophrenic- needs medication.’
• Police and mental health teams should work together in triage teams and learn one another’s roles.
• Mental Health Advocacy is crucial.
• General training for police around distress and listening needs to be bolstered.
• Carers and family members should always be utilised as they have a lot of knowledge. Service users and carers should always be involved in planning and decision making.
• Sympathy, respect and dignity in dealing with people are all paramount.
• Housing and other social factors are very important.
• The criminal justice system is inappropriate for people in severe distress.
• Long term solutions should be aimed at rather than quick-fix measures.

Mi wnes i helpu Anne Krayer wrth gyflwyno'r canfyddiadau hyn a chanfyddiadau eraill i grŵp yn cynnwys gweithwyr proffesiynol iechyd meddwl ac uwch swyddog yr heddlu'r wythnos ddiwethaf. I mi'n bersonol, os ewch chi â dim ond un peth o'r ymchwil hon, hynny fyddai ei bod yn hanfodol i'r holl bobl ac asiantau, yn cynnwys yr heddlu, grwpiau yn y sector iechyd, gofal cymdeithasol, tai a gwirfoddol, ddeall ei gilydd, a chyfathrebu'n gyson â'r naill a'r llall i ddatrys materion cymhleth iawn.

I assisted Anne Krayer in presenting these and other findings to a group consisting of mental health professionals and a senior police officer last week. For me personally, if you only take one thing from this research, it would be that it is vital for all of the people and agencies, including the police, health, social care, housing and voluntary sector groups to understand each other and to constantly communicate with one another to solve very complex issues.

Am fwy o wybodaeth, cysylltwch ag Anne Krayer ym Mhrifysgol Bangor: a.krayer@bangor.ac.uk

For further information please get in touch with Anne Krayer at Bangor University: a.krayer@bangor.ac.uk

Cyllidwyd yr ymchwil gan Lywodraeth Cymru trwy Ymchwil Iechyd a Gofal Cymru

The research was funded by the Welsh Government through Health and Care Research Wales