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Lorna Jones runs the youth group at Mid Powys Mind, ably assisted by volunteer Abby Simms. The group is aimed at 16 – 25 year olds, and gives them a safe and supportive place to meet and talk about what’s bothering them. I recently met up with three of the young people who attend regularly to find out more about the group.

We’ve been going to the group since June last year which is when the very first meeting took place. We just do little bits of activities every week and it’s nice to get out. It’s in the Wellbeing Centre in Llandrindod and 5 to 7 of us are attending at the moment.

We’ve done pottery, art, games, we get to go on walks (that’s my favourite), and do Zentangle-mindfulness doodling. We do loads of different stuff, whatever we fancy, if we want to do something we just say. We plan quite far ahead and we’re all involved in structuring what we do. Some of us live further away so it’s not possible to get up every week, so we write down the dates that will be best for us.

Lorna Jones, Youth Worker Mid Powys Mind
It’s just nice to come somewhere and have a bit of a chat. It’s a safe place to go so if there is something on your mind, even if you don’t talk, Abby and Lorna talk it out of you. They pull it like a string! They pick up on your mood and always know when something is wrong. They’re very good, they’ve worked out who each of us are and what makes us tick and what doesn’t.

As it’s quite a friendly group we’ve all got to know each other really well so we’ve learned what to say and what not to say - what triggers other people. It’s good to be able to go somewhere and know that, hang on a minute, I’m not the only one who actually has to deal with something like this. I’ve gone and then learned that three people have actually had to do a very similar thing to what I’ve had to do. We’re all pretty close. We’re all treated the same way. Nobody is treated differently. Everyone has the same respect for each other.

Everyone’s problem is just as important as everyone else’s.

We didn’t know any of the others. It was new to all of us. It was a bit scary at the start but Lorna and Abby were really good at introducing everyone to each other. I think people have come out of their shells. When I came I didn’t really want to talk, I was very quiet, but now I don’t stop and others were very quiet too, wouldn’t say boo to a goose. We were all private and Lorna and Abby have brought our thoughts out of us. They make a relaxing, calming atmosphere.

Abby Simms, Mid Powys Mind volunteer, at a pot painting session
I’m quite a moody person and Lorna and Abby help us out with emotional and practical things. 

It’s good to get out of the house and away from everything else. To have a break. New people can just show up to the group. It’s a place we don’t have to go to have counselling, but we can go somewhere and just say “I feel crap today”. Even if you say “I don’t want to be here right now”. Okay, yes, alarm bells go off in their heads but they actually sit and listen to you. They make time to listen to you. Whereas in normal life we have busy parents who don’t have the time to do it, it’s good to have a place just for you which is your safe place.

In the past if we needed extra help Lorna signposted us to a different service, or if we were nervous Lorna contacted them for us. When I first came to the group, I was a bit of a mess and really struggled and Lorna put me in touch with Claire who works for Mid Powys Mind as a Recovery and Support Worker. I would not be here today if I hadn’t come to this group and met Lorna and Abby. I’ve learned to trust again, it’s taken a long time to get to where we are today, the good thing is you can have a joke with them. Some people have down days but the atmosphere isn’t down, there’s always something going on. 

Say there’s a new member and they don’t want to walk in with all of us in the room, if you speak to Lorna beforehand she will meet you outside first. It’s little things like that, and she prewarns us as well, some of us are quite nervous about meeting new people, they say you have to be nice! Those little things make a big difference.

Confidentiality is a huge thing and we all respect that. Though we have broken some rules…. Only phones! But we are teenagers!

There are activities planned for the next few weeks. We have Monopoly, another walk, we’ve walked around the Lake before, we get a newsletter with a list of options. It’s 2 hours every week. It’s open to anyone in the Mid and North Powys area aged 16-25 to come along.

Many thanks to the young people for telling me all about the Youth group at Mid Powys Mind. If you want to find out more about the group then contact Lorna by emailing youth@midpowysmind.org.uk or ringing 01597 824411. There is also a Youth group Facebook page.
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Mental Health Awareness Week takes place from 13 - 19 May 2019

The theme this year is: Body Image

Jen Hawkins, my colleague in the Health & Wellbeing team here at Powys Association of Voluntary Organisations, and I made short video for our Health Lift series. 

We explore the issues surrounding body image and how it impacts on our mental health, look at the main facts, consider who it affects, and suggest a few tips to encourage us to #BeBodyKind.

Health Lift - Mental Health Awareness Week - YouTube

You can find out more about Mental Health Awareness Week and Body Image on the Mental Health Foundation's website.

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Launch of the Mid Powys Mind Side by Side project
A couple of weeks ago I attended the evening launch of Mid Powys Mind’s latest project – Side by Side Cymru. The project has received support from Mind Cymru and the Welsh Government. 

We learnt more about the initiative from various members of Mind staff who spoke on the night. They were joined by Kirsty Morgan, Assembly Minister for Brecon & Radnorshire in the Welsh Government. 

Mary Griffiths, Development Manager, Mid Powys Mind 

Mid Powys Mind is very excited and proud to be part of Side by Side Cymru. We are one of four hubs in Wales led by Mind Cymru. The MPM hub covers Mid and North Powys, and supports peer support. Peer support has always been an integral part of the services MPM offers. 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. 

The support of peers can help people recover and to form friendships – so important for mental health and wellbeing in an increasingly isolating world. People who have used our services have told us time and again how they have benefited from the support of others who have really walked in their shoes. That is why MPM jumped at the chance to be involved in this project. Not just to support people who have their struggle with mental health in common, but all peers no matter what their shared interests or shared histories.

Powys is the most sparsely populated county in mainland UK and as a result of this we are often lacking in access to statutory services. This has been a huge driver in creating a large and active voluntary sector from sports clubs, to Young Farmers to Women’s Institutes, to village halls and U3A to name but a few. Powys has a lot of really good peer support going on already. MPM has seen the value of peer support and we believe if there is anything we can do to help it thrive even more we should be doing it.

Rachel Wyatt, Senior Project Officer, Mind Cymru

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

Side by Side fits really well with Mind’s national strategy – Building on Change – the aim is for 100,000 people to access peer support opportunities across England and Wales by 2021. The project is very much based on previous work done in England that we are bringing into Wales. It was the biggest research project carried out on peer support in the UK as a whole. Over £3 million was invested, to understand some of the values that underpin peer support and to work out what people need. 

One of the important findings which is relevant to our work here in Wales is that peer support is often within groups and people who take responsibility and control in the groups and publicise the work they are doing – these doers really need a little bit of extra support themselves. So these are the people we will be targeting as part of this project.

Something else that also came out was the development of a toolkit for peer support which is freely available on the Mind website. It gives practical help, advice and some interactive activities in terms of things you can do practically in your groups to support each other.

Our aim with Side by Side Cymru is to improve the wellbeing of people experiencing mental health problems by improving the availability and quality of peer support available in the community. MPM is one of 4 local Minds working with Mind Cymru to deliver this project. Newport Mind, Merthyr & the Valleys Mind and Aberystwyth Mind are working across their areas of Wales.

We will be running a range of events and shared learning training workshops for people to cover different topics identified locally as being really important in relation to small community groups. Small grants are also available to start and develop groups.

The target audiences are people who are already delivering peer support within a group. We’d also like to hear from people not currently delivering peer support but are interested in doing so. There will be some specific targeted work involving people who are Welsh speakers, rural communities (farmers and the farming community), Black, Asian and minority Ethnic (BAME) communities and a male audience as well.

There is an independent evaluation as part of this project. We intuitively know there is something really helpful about peer support but trying to prove it is quite difficult. There has not been much research around peer support, so this is a really good opportunity to do some here in Wales.

One of the things that will be measured is people’s confidence – will it be improved by what is being delivered in Mid Wales, and if it has a knock-on effect for community groups in Powys. Does peer support improve people’s wellbeing, connections and hope for the future?

Lorna Jones, Side by Side Cymru Officer, Mid Powys Mind

I met with a lady the other day who said – we don’t do anything. We only meet and have coffee. So I said I would come along and take a look. So I went, and there were between 15 and 25 people having coffee in a village hall with two ladies thinking they were doing nothing amazing. To me they were doing everything amazing. They were giving up their time. Nobody was paying them any money. And the people having coffee were very isolated in a very rural village. What people do voluntarily is unrecognised. This project is a way of recognising this. 

What has really blown me away is that one of the first questions people ask is “what is the training I can have to help my group / club?” The stigma of mental health is much less than it used to be and people are willing to admit that if we meet that’s good for our mental health. This is as much about preventing poor mental health as us coming in later to support that mental health. We all have mental health.

It can be a rugby club… a dementia group… a carers' group… or a Parkinson’s group… all the Young Farmers' Clubs in Radnorshire have signed up. You can also set up new groups in your community -  there are grants to support the group to continue. We cannot go in to the workplace. However, if a social group is set up outside the workplace where people can meet that is fine.

My vision is to set up a community of support within support, so in each group there is always someone who can help someone. Some organisations are offering use of their venue free of charge. That’s huge. A big cost of running your group is the cost of a venue.

People are so willing to help. But we need to network that information. Over the next 15 months we will make those connections in the community so that we can all support and help each other.

If you have decided that your group would like to apply or have some support you can register your interest online and apply for a grant if you want one. There is a list of eligible items. Cash is not available or funding to pay members of staff. Items will be given out at quarterly network events. Attendance at these is not compulsory, but if you invest your thoughts and ideas at an event we can build on this.

I work in the Wellbeing Centre in Llandrindod. I can also come out to your group and talk to you. The training will incorporate the tool kit but also confidentiality, safeguarding, boundaries, self-care and basic mental health awareness. We will signpost people to further training as required.

Kirsty Morgan, Assembly Minister, Welsh Government

There is often a place for prescription drugs and medicine to support people but there are other options that should and could be made available to individuals to help them recover and maintain their mental health and wellbeing. This project is part of the attempt by Welsh Government to support alternative approaches to mental wellbeing by looking at different ways in which we can support people recover and maintain good mental wellbeing.

Kirsty Morgan AM speaks at the Side by Side project launch in Llandrindod Wells
I know that after a really stressful day at work I can rely on the fellow mums and dads and the kids at the Young Farmers’ Club to raise me up and help me forget about all that stress and strain. I know that there is nothing better for my mental health than forgetting about what has happened during the day and spend the evening painting sets, sewing costumes and making cups of tea and coffee for amazing young people that live in our community. That makes me feel like a human being. That makes me feel normal and well to be in that group.

I know how valuable these organisations, and being part of something, can help you significantly. If we can help more groups become even more adept and more sustainable and better at providing that network of support that can only be a good thing. There is a fantastic network of volunteers who are doing amazing things day in day out.

I am absolutely convinced that providing an evidence base to what’s happening here will be really important in informing public policy in this area moving forward.

For further information about the Side by Side Cymru project contact Lorna Jones at Mid Powys Mind by ringing 01597 824411 or emailing hub@midpowysmind.org.uk or check out the Side by Side Cymru Facebook page.
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My colleague Sue Newham, who is the Engagement Officer for Powys Association of Voluntary Organisation's Health & Wellbeing team, talks to Jenny Hall about the Dementia mapping project she recently completed in Powys in this short video.

Dementia mapping project 2019 - YouTube

Find out more about the PAVO Community Connector team.

Read about the last Powys Dementia Network Day, which focused on housing for people living with dementia in Powys.
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by guest author Caroline Andrews

On Tuesday 2 April I took the plunge and held a film screening at the Friends' Meeting House here in Llandod. The film? “Emerging Proud: coming out of the Spiritual Closet."

For my whole adult life, I’ve walked a balance of being “here and yet not here”. In the world and yet not of it. Having experienced a prolonged spiritual awakening after the second year in university, yet being treated like I was wrong and ill, I tried to dumb myself down and “fit in”, playing it safe.

A few years later, however, my soul had other ideas and another download of information, energy and spiritual awareness occurred. Once more, I was treated like I was ill and slightly “wrong”, forcibly injected with toxins and locked away, to awaken with my senses deadened and feeling this time like nothing that felt important to me was safe to explore.

A year later I had clawed some light back in to my life and re-gained my confidence though once more experienced a prolonged peak state that landed me one more time in hospital.

This time, I had the support of a loving partner, and a deep knowing inside that this was a spiritual awakening. “One flew over the cuckoo's nest” sprang to mind as I set to have as much fun with the other “inmates” as possible until I managed to set up a tribunal. Luckily I was released before it came to court.

10 years later, I’m showing a screening of a film that speaks volumes about my own journey and the profound times we are living in. People from all over the world speaking about their experiences and how the labels they were given vastly underestimated the value of their profound and revealing life changing experiences. Time after time, we hear from people that validation of their path was the most helpful part of their journey, in opposition to the treatment by the psychiatric system that would dumb down and medicate the person creating invalidation and inner turmoil.

The campaign whose name echoes the film title, Emerging Proud, was started by Katie Mottram, also author of “Mend the Gap”. In her book, Katie shares her own experiences in life, from being a carer in the mental health system to being herself an experiencer, and her realisation that the spiritual aspect of the journey was often overlooked though sometimes the most valuable part of the experience.

I trained with Katie through the organisation Emerging Proud to become an Emerging Kind peer group facilitator. In these peer groups we share from the heart, and listen without judgement. This is a safe space, where there are no labels, just love and acceptance for each other. Last year I ran a group here in Llandrindod Wells for 10 months. There were tears and a lot of laughter and for me a profound sense of home. Having felt so alone for my whole adult life, I had finally found a place to share my experiences without fear of being re-sectioned or ridicule.

Now in its second year, I have created a new peer group, based on the attendees of the film screening and at present, we are full to capacity. If you’d like to join the group, I can keep you on the waiting list. The film itself is worth watching for a life changing feeling of seeing people all around the world experiencing exactly what I did. Check it out for yourself here:

#Emerging Proud Final Version - YouTube
And find out more about Emerging Proud here.

“Times, they are a-changing,” and so should the solutions to our challenges. Emerging Proud supports the growing notion that mental health crisis is in fact an invaluable and life changing experience and with the right support and encouragement we may all come out the other side transformed like the butterfly, spreading our wings to take on a new horizon.

To find out more about Emerging Proud in Powys, contact Caroline by emailing carolinemaryandrews@hotmail.com or ringing 07749 232 366.
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Pat Borland is a volunteer with the charity Farming Community Network, which supports farmers and families within the farming community through difficult times. 

Originally from Zimbabwe, Pat moved to live in Mid Wales 10 years ago and has been an FCN volunteer for the past four and a half years. She inherited the secretarial duties in October 2014 and early in 2015 the role of Regional Coordinator was added.

I caught up with Pat at the FCN national conference last Autumn at the Royal Welsh Showground near Builth Wells, and recently found out more about her role and the FCN.

How did you get involved in volunteering with the Farming Community Network originally?

My husband and I were asked, due to our experience in agriculture, to join the Diocese of Swansea and Brecon Rural Life Committee through which we met Revd Richard Kirlew. At the time he was the FCN Regional Coordinator for Mid Wales and he inspired me to volunteer for FCN.

Tell us more about your role for FCN and the work of Powys volunteers

The main responsibility of Regional Coordinators is to oversee the organisation and activities of FCN groups at county level. They are the link, with their Regional Directors, to the FCN head office and staff who provide direction for the organisation and support to the volunteers. Key duties are to receive, process and delegate case referrals but in order for this to be effective there should be sufficient, adequately trained caseworkers available as well as adequate resources and safeguards. Making sure that everything is in place in a voluntary organisation is very challenging!

Volunteers can be called on to support farmers through a wide variety of crises from running short of stockfeed to bankruptcy, and from minor family fallouts to bereavement and suicide. Some cases are resolved with a few telephone calls while others require the caseworker to provide support for months and even years. The support takes the form of listening and helping farmers work through the options open to them rather than giving guidance and advice but frequently caseworkers call on the expertise of other organisations and professional people to assist in restoring the farmer’s capacity and ability to run his/her own life.

What are some of the signs that someone from the farming community is struggling with their mental health?

These are much the same as in all sectors of the population, the difficulty being that farmers tend to be more isolated than those who live in villages or towns so there is less opportunity for others to detect the signs. One of the most obvious signs is a significant change in behaviour and another would be that the farmer is not coping with his routine work load.

Ed Ford, Chairman of the National Federation of Young Farmers said last year: “Farmers are incredibly proud people and will not ask for help.” What can we all do to encourage farmers to talk about their mental health?

We should work towards a society in which mental health issues are discussed as freely and non-judgementally as any other, and can provide opportunities and places where farmers can feel safe and comfortable about discussing their wellbeing e.g. setting up Wellbeing Clinics at livestock markets and ensuring that market places provide opportunities for individual farmers to discuss their concerns and problems in private and in confidence.

Pat speaking at the FCN AGM in Autumn 2018

What kind of support can FCN provide when someone does get in touch? 

Once farmers have contacted FCN and requested assistance they are provided with a caseworker who will ‘walk with’ them for as long as it takes for them to regain their self assurance to manage on their own. The caseworker does not give technical advice but rather gets the farmer to talk through all his/her concerns and suggests various options for moving forward. 

If the farmer needs specific professional advice or financial support then the caseworker will indicate the options available and assist with the processes involved. For example in a recent case the father of a family with several children who have special needs was incapacitated leaving his wife (in this case the farmer) to cope on her own in financially straightened circumstances. The FCN caseworker was able to advise the farmer on how to establish that she was paying far above the recommended rent for her small holding; where to apply for grants and support for her special needs children; and finally which agricultural grants and loans she was eligible for to help her through the difficult time. Unfortunately her misfortunes are not over - now she has received notice to vacate the smallholding within one month but her caseworker is still supporting her!

What are some of the most challenging issues facing farmers in Mid Wales at this time?

The combination of last year's long, hard winter with the long dry, hot period during summer has resulted in livestock farmers having used up all their on-farm feed stocks and being unable to build up sufficient reserves to take their normal stock holdings through the winter and early spring. They have been forced to de-stock when prices are low resulting in financial losses. It is at this time of year that farm subsidies are paid out and inevitably some farmers are not paid on time or as much as they anticipated which leads to enormous financial stress. Not to mention Brexit which is making the future so uncertain. Once the political situation has been finalised then farmers, like other business people, can make decisions and move forward with a greater degree of certainty and confidence.

If people don’t receive the support they need, what can happen to them and their farms?

As in other families and businesses this can lead to severe personal and family stresses which may end up in family breakdown or even suicide, and if the family cannot function properly, the farm cannot be run productively which means it will probably have to be sold or in some cases just abandoned! Of all professions in the UK, farming has the highest number of suicides: nearly one per week!

We hear that isolation and loneliness can be a big issue for some farmers. Are there any networks that farmers can tap into?

Farmers can and should participate in community activities and interact with their neighbours and colleagues. More formally young farmers can join Young Farmers' Clubs while all farmers can join the NFU (National Farmers' Union) or FUW (Farmers' Union of Wales). Through these organisations, or other sources of information, farmers will learn of conferences, seminars and short courses designed to strengthen their skills and should make a point of participating in these on a regular basis. One appreciates that it is not easy for them due to the distances they may need to travel and the difficulties of leaving the farm unattended however resolving these issues is easier than sorting out the consequences of long term isolation and loneliness!

Which other organisations do you work closely with, either locally in Powys, or in the rest of the UK, to provide support to the farming community?

Traditionally FCN works with the other farming help organisations namely RABI (Royal Agricultural Benevolent Institute) and the Addington Fund and of course the Government Agencies as applicable to various cases and in some instances in specific programmes like Cymorth Bovine TB control. In Wales the various FCN Groups, led by our Regional Director, are forming working relationships with all support agencies and charities that supply specialist services that may be applicable to achieving FCN’s objectives. The cooperation and information provided by PAVO is an essential component resource for us.

What are the main challenges of the role?

The main challenge of my job is in matching volunteers to cases particularly as we actually do not have enough caseworkers and most of our volunteers do not speak Welsh.

Tell us about some of the most rewarding work you have done at FCN so far

For me the reward is to hear that a caseworker has been able to support a farmer to the point where he/she has overcome their problems and is once more living happily and productively.

When you are not volunteering for FCN, how do you enjoy spending your time?

Walking in beautiful Wales. 

If you want to find out more about the Farming Community Network you can go to the website at www.fcn.org.uk or email help@fcn.org.uk or ring 01788 510866.

If you want to talk to a sympathetic person who understands farmers and rural life you can call the FCN helpline: 03000 111 999. Calls will be answered in person from 7am to 11pm every day of the year. Alternatively you can email the e-Helpline at chris@fcn.org.uk
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by Jen Hawkins & Jackie Newey
Health & Wellbeing / Mental Health Information Officers

On Wednesday 20 February we attended the latest Powys Dementia Network event at the Elim Church in Brecon. It was organised by our colleague Sue Newham, Engagement Officer in the team, and attended by a huge variety of organisations and individuals. These included Community Psychiatric Nurses from the Brecon Community Mental Health team, the Macular Society, Mid & West Wales Fire Service and Care & Repair Powys to name but a few.

We will try to capture some of the spirit and information from the day below, but if you would like to find out more and / or attend future events then please get in touch - further details at the end of the post. The last Network event was also captured for the blog in Powys Dementia Network event Spring 2018.

Overview - Heather Wenban, Dementia Lead Nurse, Powys Teaching Health Board

Heather emphasized the importance of continuing to raise the profile of dementia as we have been doing. It is high on the Welsh Government agenda with increasing numbers of people living with dementia as the population ages. She reminded us of the 6 pledges in the Powys Dementia Plan, and also highlighted the significance of working collaboratively with Powys County Council and the Third Sector to achieve the best possible outcomes for people living with dementia.

There have already been many achievements in Powys, including the introduction of the Butterfly Scheme on hospital wards, a rolling programme of dementia awareness training for health board and care home staff, and specialised RITA (Reminiscence Interactive Therapies and Activities) training too.

Heather noted the huge focus on housing in the new Welsh Government Dementia Action Plan for Wales. She is keen to share best practice with colleagues and work towards the goal of ensuring people can live well at home for as long as possible.

Making our communities and housing dementia friendly - Steve Huxton from the office of the Older People’s Commissioner

Steve began by addressing the discrimination and stereotyping that many older people living in Wales face on a daily basis. He said that older people need to feel valued and respected, to lead healthy active lives, to have their voices heard and be acknowledged as “experts by experience” in building communities for the future.

He is pleased to see the rise of dementia friendly communities in Wales, which can make transformative changes for people living with dementia, but recognised that there is a spin-off for communities which become better for all of us as a result.

Whether housing is provided by housing associations, the local authority or Third Sector organisations it is key that important questions are addressed such as - can people access transport, socialise with friends or enjoy green spaces? Steve believed that no one sector can do all that is required - it is important to look at innovative but practical solutions to meet the needs of the over 55,000 people who will be living with dementia in Wales in just the next two years. 

Housing is critical in all aspects of our lives - and creating warm, safe and accessible housing that allows people to live independently for longer reduces the impacts on stretched public sector services as well as improving individuals’ lives. It’s essential to recognise the importance of housing as more than just accomodation, it’s where our days begin and end, where each daily journey starts, it’s the heart of our world that allows us to live the lives we want to lead. We need to move away from theoretical practice and implement something that can make a big difference to people’s lives, creating a Wales that everyone is happy to grow old in.

Understanding housing support needs - Terry Flynn, Powys County Council

Terry is both a team leader for the council’s housing strategy and also a pensioner! After acknowledging the changing demographics of Powys whereby younger people move away for work and education whilst retirees choose to settle here in later years, Terry focused on two specific areas of his work: the bricks and mortar, and housing support needs.

The old sheltered housing model of the 60s and 70s is not fit for purpose in this day and age. Council and housing association stock is being reviewed and refurbished where appropriate to suit the needs of today’s aging population. He was shocked to discover that 30% of accommodation originally designated for older people was no longer suitable, for example, not accessible.

Terry went on to describe a new approach called Extra Care. Working with the health board and housing associations in Powys some of the care homes are being replaced by a different kind of provision. An example of this is Llys Glan Yr Afon in Newtown. Here people can live independently in their own homes but be reassured that extra help and support is available throughout the year. Similar projects are being developed in Ystradgynlais, Welshpool and eventually Brecon.

Terry championed the “unsung service” of Housing Support Needs, who in conjunction with voluntary sector agencies work for one purpose - to ensure people can live independently in their own homes, “to make sure they are on an even keel.”

Sharing information & networking during the day
Approaching dementia differently - Sam Bolam, CEO Dementia Matters in Powys, with Frances Isaacs and Gill Garner

Sam asked us all to think if there is a different way of doing things when working to improve the lives of people living with dementia. “We need to have a beginner’s mind and look at how we can constantly improve and change what we’re doing. It is time for a dementia revolution.”‘When we pause, allow a gap and breathe deeply, we can experience instant refreshment. Suddenly, we slow down, and there's the world,’ Pema Chodron

Sam highlighted the need for change in how we approach supporting people with dementia. It’s not acceptable to just adopt a technical approach, but to recognise and adopt a person centered approach, changing from ‘what matters,’ to ‘you matter.’’ Considering person centered approaches like colour coded tarmac to support people in their daily journeys to and from their homes. Sam showed some stereotypical images of people with dementia and challenged the preconceived view held by many, she called for a dementia revolution, looking at supporting the whole human. 

There followed a conversation between Frances (who lives with dementia) and Gill (who cared for her father who lived with dementia) about some of the difficulties they have and do face and strategies they have used. Frances described, very entertainingly, how she once found herself in a broom cupboard instead of a toilet, and her “Psycho” experience when trying to extricate herself from a steamy shower. But, she said, “there is a life I had never imagined between diagnosis and before I go down the pan.” She went on to describe some of her most rewarding experiences as a volunteer with Dementia Matters in Powys, her love of the open air, and the fun times at Brecon’s Meeting Centre. Frances also impressed upon us that “it is important that you do the things that you love, that are you.”

Information sessions

Alzheimers’ Society’s New Deal on dementia 2017 - 22, and it’s new service model, Dementia Connect - Kerry Phelps

Kerry Phelps introduced the Alzheimers Society as the leading support charity for people with Alzheimers. As an organisation they’re increasing their reach irrespective of circumstances and engaging as many as 1000 people in their consultation processes. She introduced their new service ’Dementia Connect,’ a staged transitional process with five different tiers.

Dementia Connect was trialled in the Pennines, then Birmingham and is now being rolled out in Wales as an early adopter model. The programme followers a befriending model with a dementia support worker assigned to support people with their dementia journey from diagnosis, through to end of life. In Powys Anne Clark is the point of reference for South Powys, whilst Alvine Stewart has been newly appointed as the point of reference for North Powys, both posts offer 28 hours of support a week and are currently based in Talgarth.

The first point of access to the new service is by telephone call to a professional support hub, staffed by trained dementia workers, where each caller has the option to talk to a Welsh speaking support worker should they require it. Most people are able to access support and receive the support and help they need with triage and generalised support. However 70% of people whose queries cannot be dealt with there and then are escalated to the next level of tier 2 support.

Tier 2 support workers offer one to one support in the home with commissioned care plans. After the Tier 2 support has finished a KIT, ‘Keeping In Touch,’ support worker will proactively be in contact six months after the cessation of support to monitor progress and assess whether further support is required. This tiering of service is designed to prevent ‘slippage,’ of people falling through the net and not accessing the support they need.

Access to the service is possible via several pathways. The online referral portal is popular with 90% of current referrals from HSC professionals. Side by Side is a similar model to the Befriending model with the capacity to refer people to the service. Dementia Connect is slowly building momentum in Wales with 30 callers since January to the Welsh speaking support line. There is a wealth of information online with 100 factsheets on the website that anyone can easily access Publications and Factsheets Another useful service provided as part of Dementia Connect is an online talking point forum, lead by people with dementia and their carers, putting people at the heart of the service and helping people to truly connect, sharing support through lived experience, Talking Point - Online Community

Sue Newham, Engagement Officer - PAVO, with Frances Isaacs who spoke about living with dementia

Ambitions in later life

Gill Garner & Frances Isaacs facilitated this workshop looking at practical solutions for people living with dementia.

Finding out about new activities in local areas for people living with dementia - Jenny Hall / PAVO

Watch out for a separate blog post about this recent research project.

Q & A session

The afternoon session gave everybody attending the conference the chance to share their views and opinions about the network and how we shape and develop it moving forward. Sitting in a circle gave a real sense of coming together, connecting and sharing, rather than a “contribute from the floor, more formal feedback” session. The session began by asking what is the purpose of the network? How do we drive it forward? How do people have their needs met and what do we focus on next?

The consensus of opinion was that the service users are our priority and as such they should be more proactively involved in the network, giving us the insight and opportunity to take more purposeful action on specific services. It was suggested that a pre-meeting consultation could be held with a dementia steering group to determine what our focus should be. There was also a felt need to forge stronger, valuable links with other groups working towards a common goal such as the Alzheimer’s Focus on Dementia groups.

To actively engage people with dementia and to be led by their needs and requirements was commonly felt to the best way forward, considering how we actively engage communities, focussing on tangible issues that make a real difference on a daily basis. Recognising that we all need a plan for aging, asking ‘Are you OK? Can I help,’ are questions that can make a real difference to people’s lives.

Trish Buchan, trustee for Powys Teaching Health Board, summarised the day by saying that ‘Today is a giant step, we have moved forward and come a long way. PAVO’s Engagement Officer Sue Newham agreed and added, ‘big picture thinking starts with lots and lots of steps to get there,’ Lets see what else we can do to make a real difference to people’s lives and change what Frances Isaacs, an attendee living with dementia, calls ‘pyschobabble,’ to productive babble.

To sign up to the Powys Dementia Network and find out about future Awareness Days then please contact Sue Newham, Engagement Officer at PAVO, by emailing sue.newham@pavo.org.uk or ringing 01597 822191.
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Sophia Bird was, until recently, a Principal Health Promotion Specialist at Powys Public Health. Before she moved on to her new role, she updated us about the work of the Perinatal Mental Health Services in Powys. Sophia was also previously on the Powys Perinatal Mental Health Steering Group.

Colleagues from different sectors across Powys who sit on the Powys perinatal mental health steering group have one shared goal: to ensure that all new parents and their families receive the right care, by the right practitioners and at the right time, irrespective of where they live in Powys.

It is estimated that between 10 and 20% of women will experience poor mental health during pregnancy (antenatally) or after the birth (postnatally) and men can suffer from poor mental health during this time too. After all a new baby means many changes for parents and it can take a while to get comfortable with this new role.

The parent-infant relationship is the key relationship for the infant during the early years and helps shape healthy brain development and patterns for future social and emotional relationships. This developing relationship starts during pregnancy, so it is really important that the parent is well and able to support and nurture their infant. A parent’s poor mental health may affect their relationship with their infant and if there are difficulties in this relationship it can result in a less-securely attached infant because babies need parents to respond sensitively and consistently to their needs. If a parent is not well enough to provide this then there can be longer term effects on the infant.

Over the past few years a number of people from statutory and third sector services have been working to develop services in Powys that support women experiencing poor mental health during pregnancy and after the birth. The steering group has representation from midwifery, health visiting, primary and secondary mental health services, third sector and service users and this partnership has been working to improve the support received by women and their families during this special time.

So the steering group has been keen to ensure that Powys services are set up to provide as much support as possible to new parents and their families. Since 2015, midwives and health visitors have been able to refer any women identified with moderate to severe mental health concerns directly to adult mental health services, and alongside this can offer structured ‘listening visits’ which have been proven to be helpful for those with mild to moderate mental health concerns.

In addition, the nursery nurse service can also provide some practical support, alongside community-based services such as Action for Children, Mind's Mums Matter groups, Bump to Buggy walks and Sblash a Sbri - water-based parent and infant sessions.

So, if a pregnant woman, new parent or family member is concerned about their mental health, what should they do?

The best thing they can do is to talk to their health service provider – their midwife or health visitor in most cases. They will be able to support the family, and can refer and suggest other services that can also help.

More generally, the points below are general top tips from Health Visitors:
  • Babies are born ready to relate, to build relationships and seek companionship.
  • Skin to skin contact helps to build relationships.
  • Good relationships help baby’s brain develop well.
  • Babies know their parent’s voice(s) and find it comforting, so talk and sing to your baby.
  • Engaging with your baby by talking, touching, looking at your baby helps to build your bond with your baby.
  • Looking and gazing at your baby’s face helps your baby’s brain to develop well as well as building your relationship.
  • Mirroring your baby’s expression and tone can help baby feel understood and manage their feelings.
  • Babies communicate using expressions, tone, and body language. When you watch your baby you learn to understand them better.
  • When your baby cries, think about what the crying may mean. Touch and comfort can soothe your baby.
  • Try putting yourself in your baby’s shoes, babies need their parent to help learn to manage their emotions. Give them a loving, timely response.
  • What your baby experiences, what they hear, feel and see, will shape their brain development, personalities and experiences of relationships and the world, so show them your love.
  • How a mother/ father feels may impact on their baby – so their needs are really important too, they need support.
  • Happy parents = happy baby.
  • Breastfeeding is best for your baby, but however you feed, try to respond to your baby’s feeding cues and hold them close when feeding.
  • Offering your baby lots of opportunity to explore and play will support their physical, social and emotional learning and development. Tummy-time is great for this when they are little.
  • Providing a loving, calm and consistent home life will help your baby regulate and feel secure.
For further information about Perinatal Mental Health Services in Powys contact Suzy Fairclough, tel: 1597 828711 or email: perinatalMH@wales.nhs.uk
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Maud & Pauline beneath a display of their artwork
Last week I attended the opening of this truly inspiring exhibition at Centre Celf in Llandrindod Wells. We originally wrote about one of the art organisation’s workshops for people living with dementia in Looking at me – an arts and dementia initiative - in 2017 in the early days of the project. 

This exhibition – "Reaching Out, Drawing In" - is the result of all the many workshops that have taken place over the past two years, for people living with dementia and learning disabled adults. 

Anne Evans is the chair of Celf o Gwmpas, and she told us more about the show:

In 2017 Celf o Gwmpas received funding from the Arwain LEADER programme for an ambitious project piloting new ways of delivering arts workshops to adults with a learning disability and people living with dementia and their carers.

We partnered this with funding from the Arts Council of Wales to run four residencies for artists with disabilities; two engagement residencies bringing to Powys highly regarded artists such as Helen Ivory and Ira Lightman, and a ground-breaking digital residency linking, in real time, with Canadian learning-disabled artist Scott Berry and participants with learning disabilities here.

We have run 174 workshop sessions, with an average attendance of 7 per workshop, and provided around 1218 places with this funding. It’s phenomenal really. Participants have experienced a huge range of art forms, developed skills in making and have taken up opportunities to explore aspects of their own lives through art. 

Artist Jane Mason worked with learning disabled adults in Tile Tales

The creativity really is amazing. We’ve had print making, puppet-making, film and animation, tile making, mosaics, watercolour painting, sewing and quilting, linocuts, multi-media personal mapping, poetry, instrument making and creative bird box construction. 

The Tile Tales ceramics workshops followed the story of tile making and explored ancient and modern decorative techniques to create two dimensional and relief designs out of clay.

In Dreamlands and Landscapes learning disabled adults worked with Vagabondi Puppets to explore their fears and dreams with puppeteer and sculptress Jo Munton using different techniques and materials.

Ruth Hogg, Project Coordinator, playing drums made from recycled materials
Some of the women in this wonderful project looked at what they were wearing when they were 25 years old in Fashion Memories: When we were 25. Artists Jane Titley and Annie Levy worked with people living with dementia to create quilted pieces using patterns and costumes which I remember from my childhood. The quality and creativity is excellent.

People may be living with dementia or as a learning-disabled adult, but that does not stop them from being artistic, creative and having skills that really should be shown which tells us about who they are. 

In the mosaic workshops participants worked with artist Terri Sweeney
Celf o Gwmpas is at the forefront of arts and health work in Powys, based on a 21 year history of working with socially excluded people and mentoring artists living with physical and learning disabilities, mental health difficulties and other ‘outsider’ experiences. 

We do a lot of work on very small amounts of money, and there are very few staff. This year we are starting up a membership scheme, so you can pay a small amount of money per month to support the work Celf o Gwmpas does such as offering arts activities like these.

You can continue to enjoy the exhibition until 4 April 2019 but gallery opening times are variable so please ring for details on 01597 822777 or email: centrecelf@celfogwmpas.org

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Helo sumai! Gwern dwi, y Swyddog Datblygu’r Iaith Gymraeg newydd yma’n PAVO. Un o fy nyletswyddau yw cefnogi’r iaith Gymraeg o fewn y drydydd sector a thu hwnt ym Mhowys. Rwyf am ffocysu ar ambell i faes, yn cynnwys Iechyd Meddwl.

Ehangwch ar eich rôl

Byddaf yn gobeithio cyflwyno’r Cynnig Rhagweithiol fel strategaeth i geisio cynyddu defnydd y iaith Gymraeg o fewn y setctor.

Beth yw’r Cynnig Rhagweithiol?

Mae’r Cynnig Rhagweithiol yn un o egwyddorion allweddol ‘Mwy na Geiriau…’ sydd yn fframwaith strategol ar gyfer iechyd, gwasanaethau cymdeithasol a gofal cymdeithasol a gyhoeddwyd gan Llywodraeth Cymru er mwyn cefnogi gwasanaethau Cymraeg yn y meysydd hyn.

Sut allith hyn fod yn fuddiol i ddefnyddwyr gwasanaeth iechyd meddwl ym Mhowys?

Wrth drafod materion personol gall defnyddwyr gwasanaeth iechyd meddwl deimlo’n fregus wrth drafod y materion hyn yn eu hail iaith. Dylent allu derbyn gwasanaeth yn eu mamiaith heb orfod gofyn amdano, ac mae’r cynnig rhagweithiol yn galluogi hyn.

Ydy’r Cynnig Rhagweithiol yn hanfodol?

Mae rhaid i fudiadau ar draws y drydydd sector a thu hwnt cydymffurfio â gofynion cyfreithiol a statudol Mesur y Gymraeg (Cymru) 2011 sydd yn ffocysu ar sefydlu hawliau, creu safonau a sicrhau y gall siaradwyr Cymraeg dderbyn gwasanaethau yng Nghymraeg.

Sut byddwch yn gweithio gyda mudiadau i hybu defnydd yr iaith Gymraeg?

Byddaf yn cyflenwi mudiadau yn y drydydd sector gyda gwybodaeth, hyfforddiant a chefnogi unrhyw angen arall ynglŷn â’r iaith Gymraeg. Gwelaf newid agwedd tuag at yr iaith Gymraeg fel blaenoriaeth, felly rwyf yn gobeithio ymwneud â’r mudiadau ar lefel personol fel bod fy angerdd at yr iaith a’r diwylliant yn gallu dylanwadu arnynt i ystyried bod cynyddu defnydd a pharch tuag at yr iaith yn gallu gwneud byd o wahaniaeth.

Beth ydych chi’n mwynhau gwneud tra boch chi ddim yn PAVO?

Tu hwnt i PAVO, fy mhrif ddiddordeb yw cerddoriaeth! Rwyf mewn band gyda fy mrodyr ac rydym yn gigio’n aml. Ein henw yw Casset ac rydym yn canu’n Gymraeg fel arfer ac rwyf yn dilyn y sîn roc Gymraeg. Dwi hefyd yn gweithredu systemau sain, creu celf pan dwi’n gallu ac rwyf yn weddol hyderus yn fy sgiliau coginio.

Ac yn olaf...

Does dim dwywaith amdani fod gennai lot o waith i wneud ond cam dros y trothwy yw hanner y daith ac rwyf yn gobeithio creu newid go iawn yma ym Mhowys!

Os hofffwch ddarganfod mwy am y cynnig rhagweithiol, cysylltwch a Gwern trwy email: gwern.apgwyn@pavo.org.uk neu ffoniwch 01597 822191.

Helo sumai! I’m Gwern, the new Welsh Language Development Officer here at PAVO. One of my responsibilities is to support the Welsh Language throughout the third sector and beyond in Powys. I shall be focusing on a number of areas within the sector including Mental Health.

Tell us more about your role

I’m hoping to introduce the Active Offer as a strategy to try and increase the use of the Welsh Language within the sector.

What is the Active Offer?

The Active Offer is one of the key principles of ‘More than just words...’, a strategic framework designed for health, social services and social care that was issued by the Welsh Government to support Welsh services in these fields.

Why could this be beneficial to people using mental health services in Powys?

Mental health service users might feel vulnerable whilst discussing personal matters in their second language. They should be able to receive services in their mother tongue without having to ask, and the active offer enables this.

Is the Active Offer essential?

Organisations across the third sector and beyond have a responsibility to comply with legal and statutory requirements of the Welsh Language (Wales) Measure 2011 that focuses on creating standards and rights being established that will ensure Welsh speakers can receive services in Welsh.

How will you be working with organisations to increase use of the Welsh language?

I shall be supplying third sector organisations with information, training and any other need they have regarding the Welsh language. I believe that changing attitude towards the Welsh language is a priority and so I hope to engage with these organisations on a personal level so that my passion for the language and the culture can inspire them to think more about how increased use and respect for the language can go a long way.

What do you like to do when you’re not working at PAVO?

Outside of work, my main interest is music! I’m in a band with my two brothers and we gig regularly. We’re called Casset and we sing mainly in Welsh and I’m an avid follower of the Welsh music scene.

I also operate sound systems, delve into art as much as I can and I’m quite confident in my culinary skills.

And finally...

No two ways about it, I’ve got my work cut out for me, but every journey begins with a single step and I hope to make some real changes here in Powys!

If you would like to find out more about the Active Offer then do get in touch with Gwern by emailing: gwern.apgwyn@pavo.org.uk or ring 01597 822191.
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