Monday, 2 December 2019

Repping on the Carers’ Steering Group in Powys – as a young carer

Emily and her Mum
Emily Bleakley is a young carer and also a young carers’ rep on the new Carers’ Steering Group in Powys. The first steering group meeting was convened in November 2018 as part of the Powys Health & Care Strategy overseen by the Powys Regional Partnership Board.

A year on and it seemed like a good time to find out more about how the steering group is developing and working, so we caught up with Emily to find out more.


To start off could you give us a little background about your own caring role?

I started to call myself a young carer when I was 14 years old. Over the past two years my caring role has been quite varied. I used to be the primary carer for my mum who died last year from terminal bladder cancer. At the same time, I cared for my younger brother who has autism. However, since my mum's death, I now help my brother to process his grief whilst also helping around the house.

Who has provided support to you during your time as a carer?

At the beginning of my caring journey, I didn't really want to accept help as I thought what I was doing was normal. However, after having a conversation with some of my teachers at school, I decided to talk to an outreach worker from Credu Connecting Carers as I wanted to meet carers with similar experiences to me. Since that initial meeting two years ago, I have continued to work closely with Credu and I really value the support I receive from them.

Why did you decide to take up the opportunity as a rep on the Carers' Steering Group?

I really value advocacy opportunities to give my views on carer-related issues in Powys. When the email came through asking whether I'd like to take up the position, naturally I jumped at the opportunity to represent the voices of Powys' young carers.

What was the main reason for setting up the steering group and what are the main objectives now?

In my opinion, the reason for setting up the Carers' Steering Group was to share experience about the support available for carers in Powys and to ensure its future. Our main objective is to discuss the priorities within carers' support as well as to represent the carers of Powys in a way that allows support to target individual carers' needs. 


Emily with her brother & her Mum

How often does the group meet and who else is involved? 

The group meets three times a year at a minimum. However, there are occasions when an extraordinary meeting is necessary. This is always accommodated well to allow representatives time to look over any paperwork or prepare any presentations.

There are representatives from Credu Connecting Carers, Hafal Crossroads, Children's Services, Health Services, Education Services and Powys Association of Voluntary Organisations.

What are the key issues for carers in Powys at the moment, and for young carers in particular?

Raising awareness and respite are the most common issues that keep coming up. Raising awareness is an issue that is raised by nearly every young carer I have spoken to. This is mainly because we all want to get our voices heard and make a difference in matters that impact upon our futures.

What have been the steering group's main areas of progress so far?

I would say that the steering group's main area of progress would be our consultations with the members of the caring communities that we represent. We then go on to include their feedback in our findings on how we can aim to continue providing support for carers in an effective way, whilst also contemplating any necessary improvements and how best to implement them.

What are the main challenges for you of your role on the steering group?

I am yet to come across any challenges within my role on the steering group. This is predominately because the other members are able to clear up any of the terms I don't understand in any of the documents or presentations I come across.

Tell us about some of the most rewarding work you have done so far with the steering group

One of the most rewarding parts of our work is to raise awareness of the need for carers' voices to be heard on a wider scale. We do this by consulting with people we know as well as through events we organise and attend as part of the steering group. Knowing that support for carers in Powys will continue to grow is undoubtedly the most rewarding outcome for us all.

When you are not busy with your various caring and educational responsibilities, how do you enjoy spending your time?

I enjoy attending events to raise awareness of issues such as educational support for young and young adult carers to make sure that I get a say in my future as well as to raise issues on behalf of my peers.

I am also doing a charity skydive on the 8th February next year that I am busy fundraising for. I am doing this to raise funds for Credu Connecting Carers and Cancer Research. This is something that I have always wanted to do in memory of my mum.

Many thanks to Emily for telling us about her experiences on the Carers’ Steering Group. If you would like to find out more information about the steering group then please get in touch with Credu Connecting Carers by ringing 01597 823 800 or emailing info@credu.cymru

Tuesday, 26 November 2019

The Big Data and Mental Health Survey


by Professor Ann John and Amanda Marchant 

Professor Ann John and Amanda Marchant work at Swansea University on research projects looking at childhood and adolescent mental health, self-harm and suicide prevention. As a team they want their research to help improve mental health support for people. We find out more about their latest survey.

Here at the Adolescent Mental Health Data Platform (ADP) and Self-Harm Research UK (SHARE UK), we are running a survey to learn more about how future research can answer the questions that matter to you. This will help to shape our research and to help us push for the right changes to mental health support and care. 

Professor Ann John

Transforming young people’s mental health research

The ADP represents a ‘step change’ in youth mental health research by bringing billions of pieces of data together anonymously and securely in one place. This includes health, social, education and information from individual research studies all brought together. This is a unique resource bringing together researchers from across the world making it easier and faster to deliver results.

ADP research will be used to improve young people’s mental health care

Professor Ann John, the lead of the ADP, joined forces with other youth mental health researchers in Cardiff University (Professors Collishaw, Rice, Thapar, Moore and Murphy) to lead the ‘Big Data’ theme in the recently funded Wolfson Centre for Young People’s Mental Health (Cardiff and Swansea Universities). This is an exciting new development and this survey will help inform the ‘big data’ work - please get involved.

Your views matter

The ADP is a powerful resource for young people’s mental health research. But the data is just one part of the story. We are also bringing together the voices of young people through our Be Heard page and work with the MQ Young Peoples' Advisory Group

Young people make a big difference in helping us to push for the right kinds of changes. This can be changes to healthcare, support and service provision. Our goal is to improve and potentially save lives. Your views and opinions steer our research to make sure we are answering the right questions in the right way. 


The Big Data and Mental Health Research Survey

Data is created all the time. Every time we buy something online, post something on Instagram or visit a GP, are just a few examples. All of this data has the potential to be anonymised and brought together to be used for research. But which data should be used? What kind of research should it be used for? Who should have access to it? How much do you know about how data is anonymised and protected?

Getting answers to questions like these is the purpose of The Big Data and Mental Health Research Survey  We want to know more about your feelings on the use of your data for research. This includes feelings about healthcare information and personal information such as social media posts. We want to know more about how you feel about this data being used, who should have access to it, and how it should be looked after. 

Amanda Marchant
The survey is open to young people aged 16 - 24 and takes around 10 - 15 minutes with a combination of multiple choice and free text answers. You are free to tell us as much or as little as you like. If you don’t want to answer a question, you can just leave it blank. 

The survey will run until the 31st January 2020 and we want to hear from as many people as possible:

 
Find out more about this important research at Cardiff and Swansea Universities by following the project on social media:



Monday, 4 November 2019

Stress Awareness Week 2019


This week is International Stress Awareness Week which is organised by the International Stress Management Association (ISMA).

Stress is defined by the Mental Health Foundation as “the degree to which you feel overwhelmed or unable to cope as a result of pressures that are unmanageable”.

The theme of Stress Awareness Week this year is Resilience, so we decided to ask a few PAVO colleagues what stress looks like to them (be that work-related or personal stress) and the strategies they use to bounce back from a period of stress.

How do you know you are stressed?

  • I start organising things and get really “stressy” busy. I tidy in a manic fashion.
  • I can’t sleep at night for ruminating. My mind wanders back to the stress. I can’t enjoy any leisure time.
  • I start to talk quickly, my speech really speeds up.
  • I get anxious. My heartbeat is faster. I’m sometimes short of breath. And my stomach plays up something chronic. At work I’m completely unfocused and rush from one task to another.
  • I don’t sleep and I usually find it very easy to sleep.
  • I eat more. And some of the stuff that’s not good for me like cake. And I drink more.
  • I go into manic mode first and then my sleep’s disturbed. My skin can erupt and I get snappy.
  • I can’t think straight. I can’t prioritise.
  • I get irritable and snappy.
  • I get impatient with people and / or things because I need to get on and deal with whatever’s causing me stress.


What helps you deal with stress?
  • Keeping busy. I get more stressed if I overthink things. If I distract myself with busyness I can process things in a more rational fashion.
  • I make lists. I can transfer the stress from my head to the paper and it’s parked. I do it for work and home.
  • I like to go for a walk by the sea, listen to the waves and feel the sea breeze. I love it.
  • I’m mindful that I need to take time out. An alarm bell will ring and I know I need to get out of the stressful situation and deal with it or I know it’s a slippery slope.
  • I have a “happiness box” to look through when I’m feeling down. It contains little items that make you happy. It could be anything. A picture of your family. Something in your favourite colour. A poem. A magazine. It doesn’t have to be expensive, but it’s very personal to you.
  • I like my guided meditation app. It really helps me sleep - it clears your mind.
  • Offloading. You should never go home from work with the worries of the day. 99% of the time that gets rid of any stress before I go home.
  • Simply looking out of the window for a moment or popping out for a walk in the beautiful Dolerw Park.
  • Being outside. Walking. Exercise. Healthy eating. Time to myself. Essential oils. And saying no.
  • Cutting off from what I’m doing and distracting myself with something non work-related for a few minutes.
  • Time out. Having a rant and then I’m fine after that.
  • Exercise. Fresh air. Dogs.
  • I make a decision to get up at 6am and into my routine of yoga and meditation followed by breakfast. I also make my lunch which means I’m not skipping meals or snacking. And I feel more in balance before I even get into work.


Look local

There are many sources of support if you are feeling stressed, and here in Powys you can look locally to find some of them.

Invest in Your Health is a free NHS course delivered over 5 sessions which is designed to provide practical tools and techniques to improve your quality of life and wellbeing. It is a modular course, so once you have completed the first one, Building Better Health, you can choose up to four more, such as Mindfulness, Focusing on the Positive and Follow up & Solution finding. The courses take place at venues around Powys or the sessions can be done via Skype.

Brecon and District Mind is running free Mindfulness taster sessions on 7 & 28 November. “It can be easy to rush through life without stopping to notice much. Paying more attention to the present moment – to your own thoughts and feelings, and to the world around you – can improve your mental wellbeing”.

Open Minds is a new Mid & North Powys group meeting in Llandrindod Wells on the 1st and 3rd Mondays for people experiencing stress, depression or anxiety. Socialising is combined with tips and exercises.

Ponthafren Association in North Powys runs regular Stress Management courses. To find out more and sign up to the next course you can ring 01686 621586.

These are just a few examples of courses and activities running in Powys this Autumn and Winter. To find out more check out the Powys Mental Health website events calendar.

Singing has long been recognised as a way of reducing stress. You can find out about local singing groups and choirs on infoengine, the online services directory for Powys.


Surfing online for stress solutions

There are literally thousands of websites / organisations / services out there with ideas to help you deal with your stress. Some of our favourites:

The Mental Health Foundation’s Stress page - in 2018 Stress was the main theme of Mental Health Awareness Week.

ACAS has a useful page on workplace stress with documents you can download.

The Woodland Trust has a page on the benefits of exercising in nature which can help ease stress.

The National Trust has a beginner’s guide to forest bathing - research shows that two hours of mindful exploration in a forest could lower cortisol (stress hormone) levels.

Read on our blog the Top 10 Tips for Workforce Wellness - the theme of National Stress Awareness Day in 2016.


And if you have any good tips to share with our readers about how to deal with stress, let us know in the comments’ box below.

Thursday, 24 October 2019

Wellbeing - our PAVO staff day


Earlier this month the Health & Wellbeing team at PAVO organised a Staff Wellbeing day for colleagues in the organisation. In Britain, most of us don’t tend to cultivate our minds in the same way we give to our bodies. We agreed it was important to give space to colleagues to consider their wellbeing and how they might look after it.

There are various definitions of “wellbeing,” from that promoted by the World Health Organisation to the Buddhist definition of Tibetan monk Matthieu Ricard:


"Wellbeing is not just a pleasurable sensation, it is a deep sense of serenity and fulfillment. 
 A state that actually pervades and underlies all emotional states 
and all the joys and sorrows that can come one’s way."

The day, which took place at an amazing venue - the Mid Wales Arts Centre in Caersws - was totally dedicated to experiencing activities that might impact on people’s wellbeing. No presentations. No policies. No papers. Instead people could choose from the range of activities on offer, or they could just enjoy being in an inspiring place. 



Freda Lacey, 
Senior Officer Health & Wellbeing, introduced the day

So I’m just going to give you a little bit of context around “wellbeing” and what that means. I think you all had the email about the Five Ways to Wellbeing – this has been promoted for many years across Wales and beyond. If I was to ask you to shout out those five ways to wellbeing to wake you up a little bit:

  1. Exercise (Be Active).
  2. Keep Learning.
  3. Connect.
  4. Be Creative & Give.
  5. Taking Notice.
Mindfulness could be another, but I can see someone counting! That’s more than five! There are probably many others. In fact, in doing some of the research for today you can just get lost on the web in the amount of information about wellbeing. There are the Twelve Pillars. The Four Constituents. But it was really interesting to delve into that.

So those five key themes are what underpin lots of information around wellbeing.


It’s been a real team effort today – that sense of coming together around a theme and / or something that really means something to the team. I think it’s what unites us. In terms of PAVO, as well, it unites us in terms of our work. We hear about the wellbeing of people and organisations. There isn’t one organisation that isn’t about wellbeing on some level.


Even from providing freshly made smoothies this morning it was all about – how can we set people off in the right way in terms of really feeling that sense of wellbeing – even about what you’re taking into your body. Even the food today has been really mindfully considered in terms of local ingredients, where it’s come from, how it’s been put together. The venue has also been carefully considered in terms of what that brings for us, and hopefully it allows us to be creative and indulgent, just to be in this beautiful space.

I just wanted to talk a little bit about the day. We have had some colleagues feel a little bit uncomfortable about today. We can all put our hands up and say we are uncomfortable about some things when we head into areas we haven’t explored before or experienced before. And one of the things about today was to move away from the theory of wellbeing, ie: the words, to being more able to experience an activity and / or activities and what that looks like.

Again, we all have ways of enabling or working with our wellbeing. Today was just to give you a flavour of what could be and what different activities could augment or give you a sense of wellbeing. And most of these activities have an evidence base behind them. So they are known to lead to wellbeing. Walking, for example, or, indeed, meditation. 


And something I explored earlier this summer with Academi Wales was the concept of moving into your ‘negative capability’. If you look up the words ‘negative capability’ it’s actually been around for quite a long time, it was the poet Keats who came up with it. He talked about exploring the edges of where your comfort levels are or what you think are the things you should be good at. And what he was talking about was moving into that negative capability, about understanding perhaps those areas where you might explore which might give you a sense of capability or, indeed, wellbeing that you might not think would give you that.

And so part of today was also about exploring that, about offering new opportunities such as Laughter Yoga. How many people here today have experienced Laughter Yoga before? Okay, a couple. Even I had a particular viewpoint of Laughter Yoga which turned out not to be the case! Because I said, “we’re not going to do that are we?” And then the team said, “No, no, it’s not like that at all!” 


So I think it’s just about really exploring that edge of where your comfort level is, to risk maybe today, in terms of doing things you wouldn’t ordinarily do. And it’s also really about looking after yourself. So if there’s something you’re doing, or you’re indulging in something, and you really feel uncomfortable, and you don’t want to do it… Let’s say in meditation I’m asking you to close your eyes or to be silent and you don’t want to do it – you don’t have to do it. This is not about forcing you to do something that you really don’t want to do.

And if you’re in an activity where you think – argh, I just cannot get into this, this is not what I want to be doing – don’t do it. Just leave or sit and be observant. Be mindful if you’re sitting on the outside what that might feel like to the group, but it’s not about forcing you to do something you don’t want to. It’s really about your wellbeing and your responsibility, your ability to respond to that yourself. 


I was speaking to S earlier, something that came up about that sense of moving into something you’re uncomfortable with. When we were talking about the day S said – “Oh, I’d like to do ALL of those things, apart from meditation. It’s not really for me.” So I laughed and I said, “oh, that’s interesting because I’m actually leading the meditation.” And she said to me, “Well, if you can be quiet for that long…!” 

And I think it’s really important to add that S said that she doesn’t feel that it’s the right thing to do this morning because she’s had a family upset and she’s really looking after herself in that way because she feels that being in that environment – maybe being quiet, closing your eyes or whatever might come up – is not what is comfortable for her today and I really honour that – that you’ve looked after yourself in that way. And that you’re vulnerable and saying that I’m not in that good space today. Again it’s really about saying if that’s the place you’re in then that’s OK.

OK, so the aim for the team today is that you have fun! And that you explore different things that you’ve maybe not indulged in before. That you in essence flourish. That there’s a sense of wellbeing when you walk out this afternoon. So we’re hopeful that that is going to be the case. 


Feedback following the activities:
  • I really enjoyed it.
  • I loved doing the Dabble with Art. It was a new thing to try.
  • The singing, that was fab. Really good. I didn’t expect that to be so professional! We just sounded good from the start!
  • It’s discovering those hidden talents of colleagues. We’ve just come out of a jamming session and again just aware of colleagues’ talent.
  • I think the whole day, the venue itself is really interesting and thought-provoking – just a pleasant place to wander round and kind of absorb things. And first time Tai-Chier – loved it. Fab.
  • I think that jamming session was fantastic. I didn’t realise we had so many musicians in PAVO. Loved it.
  • I’ve had a really nice day spending time with my colleagues in a different context – not working.
  • It’s actually been nice seeing colleagues that you don’t normally see, and speaking to people you don’t normally speak to on a regular basis.
  • There was one session that was definitely out of my comfort zone – that was Dabble with Art – and I deliberately went for it. And Sue was brilliant, and even I came out of that session having both enjoyed it and benefited from it.
  • Seeing people with smiles on their faces – quite often we’re all quite serious at work. I know we all smile from time to time! But people have been generous with their smiling. 


Going forward

Freda rounded off the day by suggesting how colleagues could link with community organisations to pursue activities they may have enjoyed:

We’ve experienced quite a lot of different things today and the opportunity is there to use our Community Connectors to connect ourselves with our local communities for those of us who would like to go forward and maybe take opportunities to do classes / activities, whether it’s pottery or Tai Chi, meditation, or anything really.



If you have any thoughts about wellbeing, and how to encourage it to flourish, let us know in the comments’ box below.

Monday, 7 October 2019

Powys Patients' Council - a new approach


John Lilley (Patients' Council Volunteer), Owen Griffkin (Participation Officer) 
& Rhydian Parry (Patient's Council Volunteer)

by Owen Griffkin - Mental Health Participation Officer


There is a quote that used to rattle around in my mind when going through difficult times that goes something like:

"In the depth of winter, I finally learned that within me there lay an invincible summer."   Albert Camus

I was reminded of this quote attending the latest Powys Patients’ Council meeting at Bronllys Hospital’s Felindre Ward recently, where the weather flipped between a Powys winter and an Indian summer throughout the afternoon. It’s obviously a well-written quote about resilience and recovery, and when a person is staying on an acute mental health ward the ‘invincible summer’ can seem like a long way in the distance. 

This is why it is hugely beneficial for the Patients’ Council to be staffed by volunteers who have experience themselves of staying on Felindre. The patients often express surprise when told that John or Rhyd, our amazing volunteers, were once patients themselves. 

People are more likely to open up and share their experiences on the ward, and to see other people who are further along in their recovery can give them hope for their own future journey. John had several personal discussions with people about his own experience on the ward, and this can be as much an important part of our visits as raising housekeeping issues.


A new approach

We experimented with a new format for the meeting this month, and also a new venue, as the recovery room was temporarily out of action. This meant we sat in the main common space which led to more group discussions. The tray of cupcakes helped as well! 

The recovery room being out of action was one issue raised, and this is hopefully in hand and back in use by now. We had requests around WiFi connection and access to devices so we will be looking at how this develops.The health board has a strong firewall, as you would expect from a large organisation that is reliant on Information Technology, and this can cause restrictions to content that people on the ward can access. Maybe as mobile WiFi becomes more advanced we can look at an independent network.

Another issue was a request for bird feeders out in the front. We had added some with the help of the League of Friends' committee at Bronllys so we were surprised to hear they had gone. We were told this was due to concerns from previous patients about vermin, so we are researching a solution to this age-old problem.

There were also concerns about the set times for smoking (currently 15 minutes every hour) and the response was that this is due to health and safety and staffing issues. We will have to monitor if this will change once the new indoor smoking ban comes into being and how smoking breaks will work then.

There were two other maintenance issues raised, one of which was being fixed as we left, which is a quick turnaround. The Occupational Therapy kitchen issues, which had led to it being out of use for a few months, have now been fixed.

We will be back for the next Patients’ Council meeting at the end of October, when there is likely to be a new Occupational Therapist in position on a permanent basis. We hope this role will mean that there is a quality programme of activities on the ward and will help to support this in any way that we can.


Find out more

I post regular updates about the Patients' Council meetings on our mental health website. If you would like to find out more, or volunteer for Powys Patients' Council, then you can contact me by emailing owen.griffkin@pavo.org.uk or ringing 01597 822191.


Thursday, 15 August 2019

Together for Mental Health consultation - a Powys view

Individual rep, Sarah Dale, on Llandudno beach

Our Participation Officer, Owen Griffkin, shares a report on the Welsh Government 
Consultation for the ‘Together for Mental Health’ Delivery Plan 2019 - 2022

On a sunny day (with scattered showers) I attended the consultation event for the Together for Mental Health plan 2019-2022. I was there to accompany one of our individual representatives, Sarah Dale, who felt it is was important for Powys to have a voice in one of the live consultations. This all day event was in a beautiful location in Llandudno, Venue Cymru, with a lovely sea view, which almost made the 150 mile round trip worth it.

Together for Mental Health is the Welsh Government's 10 year cross governmental strategy and was published in 2012. This consultation is to inform the last 3 years of the plan and to look at the priorities that have been identified and how they will be implemented.


The day was chaired by Ainsley Bladon, the Mental Health Strategy Lead at the Welsh Government, who is regularly seen at both regional and national partnership events. She introduced the delivery plan with a short presentation and then we moved on to the first question for discussion.

This was looking at the key priorities for the next 3 years and there were a lot of themes arising that we have come across in other engagement events. Some of these included - transition from Child & Adolescent Mental Health Services (CAMHS) to adult services, accessing mental health services with substance misuse issues, difference in service depending on location and funding of third sector (voluntary) organisations.

Also a big point raised was the accessibility of legislation and documents to the ordinary person. There is a lot of jargon and acronyms in the consultation document and this has proved a barrier to some people in disseminating the information. Ainsley said they had heard this a lot and they will look to change this in the future.


Sarah was very vocal about the need to ensure that basic service provision is met in Powys and that locally this is a priority - eg 24 hours crisis care. She also spoke passionately about the Talk to Me 2 suicide and self-harm plan, saying that it didn’t have enough mention of self-harm.

Next we were asked if the cross-cutting workstreams were appropriate to prioritise, which once again prompted some explanation requests about the technical language of the document.

These priority areas can be seen in this photo:


We were able to share some of the findings of the recent care and treatment plan engagement events held by Powys Teaching Health Board in Powys as this is linked to the ‘Core data set’ requirement, and also highlighted some of the specific issues in Powys around engagement.




After lunch, and a very quick stroll along the prom, we returned to look at what the room thought the key impacts would be and how we can increase positive effects whilst mitigating negative effects. The importance of third sector organisations was highlighted again, and a few people spoke about the relationship between staff and service users and the importance of being listened to in that relationship. 


We then ended with a reflective exercise on the effectiveness of the day and an assurance that results of the consultation will be fed back to everyone who attended. We closed with a thank you speech from Tracey Breheny, the fairly-new Deputy Director of Mental Health. It was interesting to hear that she is also responsible for Substance Misuse and Vulnerable Groups which hopefully augurs well for more coordination and understanding of the co-occurring issues of substance misuse and mental health. She also came out with the quote of the day when she said that all the comments would be ‘fed into the sausage machine of the Welsh Government’ and processed into a report.


All in all the day was definitely worth our while going although it is a shame that there isn’t an event closer to Mid Wales. It is vital that Powys has its voice heard in this consultation as we have a lot of issues specific to our county and I therefore urge anybody with an interest in the delivery plan for Mental Health services to fill in the online consultation before August 30th. You can participate by visiting the link on the following webpages:

Welsh

English

There is also another consultation event in Carmarthen on the 28th August that I recommend attending if you have the time.

Venue
Room TL5 (Ground Floor), Teaching and Learning Building, University of Wales Trinity Saint David, Carmarthen Campus, SA31 3EP.

The day will be structured as follows:

Morning 10:00 – 12:30 – Discussion of Priority Areas
Lunch 12:30 - 1:30
Afternoon 1.30 – 4.00pm – Considering Impact and Delivery

To take part please RSVP to Darren Lewis (Darren.lewis@gov.wales) including the following details:

Name, organisation (if relevant) and e
vent you wish to attend (West Wales in this case). Expenses and lunch are provided on the day. 

If you fill in the consultation, or attend the Carmarthen event, please let us know at PAVO. You can email owen.griffkin@pavo.org.uk or ring 01597 822191. We might be able to help you organise lift shares and put you in touch with others attending.


Wednesday, 14 August 2019

Powys Dementia Network - Summer 2019


by Jen Hawkins & Jackie Newey
Health & Wellbeing / Mental Health Information Officers

On Wednesday 17 July we attended the latest Powys Dementia Network event at the Football Club in Newtown. 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 Dementia Matters in Powys, Alzheimer’s Society Cymru, Powys Libraries, Hafren School children, Powys Teaching Health Board and people living with dementia to name but a few.

As always 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 in Brecon in February this year was also captured for the blog in Powys Dementia Network event - Housing.



Alzheimer’s Society & Dementia Connect - Kerry Phelps, Alzheimer’s Society Cymru

Kerry Phelps opened her presentation with some thought provoking statistics about dementia, stating that 1 million people live with dementia in 2021, a figure that is expected to rise to 2 million by 2050. The Alzheimer's Society celebrate their 40th birthday this year and in that time have learned a lot about how best to support people living with dementia.

In 2017 the society rolled out their “New Deal Dementia Strategy,” with their mission being to “transform the landscape of dementia forever.” The strategy comprises three pillars, a new deal on support, a new deal on society, (focusing on changing conversations around dementia) and a new deal on research, with the biggest investment in research to date. By 2022 they aim to “reach out to everyone from the time of diagnosis to offer help and deliver a universally accessible support and advice service.”

Dementia Connect is their gold star service through which the new deal dementia strategy is being rolled out. At present it supports 1 in 10 people with the aim to eventually be able to support 7 in 10 people. The central ethos of the strategy is focused on person centred support, planning to empower people to take control of their care.

Andrew Jones & Agnes McDonald of Powys Libraries Service

Brecon Library: Introducing the RemPod & the Past-Times Picnic Hampers - Andrew Jones, Powys County Council

Read & Remember is a new Powys Libraries initiative drawing on the value and the power of a shared oral experience - it’s all about sharing reading aloud creating nostalgic connections and sharing experience. Originally it was set up as an all-community activity, but as they worked with it library staff found that people from the dementia community were the most engaged. As a result staff built in extra resources and so the Past-Times picnic hampers were created filled with nostalgic items to trigger memories.

The hampers are themed - people can choose from the Seaside, Transport, Animals, Gardening and Wildlife. Each hamper is full of nostalgic items which twig off memories from people’s past. The hampers can be used at events and have already proved successful at a number of care homes. They work well with relevant reading material. There is no cost involved and hampers can be reserved and transported between libraries in the county with advance notice, with one member of staff in the north of Powys and one in the south to transport them. 



The hampers were followed by the RemPods - amazing pop-up banners featuring large scale photographs of relevant scenes. On the day we enjoyed taking selfies in front of the Seaside RemPod - the only things missing were the actual ice creams! Other RemPods feature a shop and a 60s/70s living room and they work really well engaging people in initial conversation. Andrew said “it’s such fun watching how people open up and chat.”

Powys Library Service is keen to work with care homes, local clubs and societies to broaden the audience and give people who would not usually consider reading aloud some confidence.

Another top tip passed on by Andrew and Agnes is the carer's library card. Anyone who cares for someone with dementia in a personal or professional capacity, family members and friends of people living with dementia, are all eligible for a carer's card. This allows you to take out up to 20 books at a time with no library fines or fees incurred.

Frances Isaacs (who spoke about living with dementia) and Deborah Gerrard, Dementia Matters in Powys

Planning a Dementia Meeting Centre in Newtown - Deborah Gerrard, Dementia Matters in Powys

Deborah, the new Chief Officer at Dementia Matters in Powys, gave an update on plans for a dementia meeting centre in Newtown. The first Meeting Centre in the county opened in March 2017 in Brecon. The National Lottery Community Fund has now funded two further centres in Llandrindod and Ystradgynlais. Newtown will be No 4.

Dementia meeting centres are staffed by community development officers, facilitators and volunteers.They offer support, advice and information to people living with dementia and their carers. In the Netherlands, where the first centres were created in the late 1990s following research, there are now over 140 centres supporting 2000 people every day. Soon there will be 10 in the UK, and of these 4 will be in Powys which is an amazing development for the county.

Members find that attending the centres means that they can live in their own homes for longer and experience an increase in self esteem and feelings of belonging with a reduction in feelings of isolation, fear and anxiety. The Newtown centre is a partnership project between DMiP and Dementia Friendly Newtown. An Initiative Group has been set up to look at locations for the centre, volunteer recruitment and responding to the needs of local people living with dementia. The planned open day for the centre is Tuesday 1 October 2019 and if anyone is interested in getting involved in the meantime they should contact DMiP by emailing info@dmip.org.uk or call 01597 821166. Developments can also be followed on social media by connecting via Facebook or following via Twitter.



Hafren School Intergenerational Project - Children from Hafren School

Children from Hafren Junior school came along to share their intergenerational singing project with us. Three hundred staff and pupils at the school are trained as dementia friends, with two members of staff qualified dementia champions. Pupils from the school are actively involved with Newtown’s dementia community and can be regularly found at Newtown Library on Friday afternoons and Plas Cae Crwn on Tuesday afternoons. 

Carl Hyde, headteacher of the school, extended an open invitation to attend one of their sessions claiming that the “two most memorable afternoons of his 21 year teaching career,” were as a result of attending the intergenerational afternoons. Take a look at our video of the pupils on our Dementia Network day or pop down to one of the afternoons to experience the project first hand.

Frances (left) and Glenda (right) who spoke about living with dementia
Middle - Anna Story of Bangor University

“In it Together, Dementia Voices in Mid & North Wales” - Anna Story, Frances Isaacs & Glenda Roberts

Anna Story of Bangor University was funded by a Dementia Innovations Working Together Grant to work with Dementia Matters in Powys and DEEP* to make a short film capturing the voices of people with dementia in Mid & North Wales. Anna introduced the film premiere with two of the participants - Frances and Glenda - both of whom live with dementia. They said “we enjoyed making the film - Anna is so easy to talk to. We had great fun.”

To capture footage for the film Anna visited different dementia groups across the area where people meet to have fun, laugh and support each other.

The film is aimed at three audiences - people living with dementia, the general public (showing that people with dementia can have fun), and care professionals where it can be used for training purposes. Watch the film in 
English or Welsh 

*DEEP stands for the Dementia Engagement and Empowerment Project – it is the UK network of dementia voices. DEEP consists of around 100 groups of people with dementia – groups that want to influence services and policies.

Eira Meyer (Advanced Care Planning Champion at Newtown Hospital)
and Heather Wenban, (Dementia Lead, Powys Teaching Health Board)

My Life, My Wishes - Heather Wenban, Dementia Lead, Powys Teaching Health Board 

Heather Wenban lead an informative and interesting session about advance care planning highlighting the fact that decisions we make about the end of our lives are just as important as how we choose to live our lives.

To find out more about this important initiative please see our earlier Health & Wellbeing Blog from June this year, “My Life My Wishes - Live Well Dying Matters,”



Community Transport in Powys - Sarah Leyland Morgan, Powys County Council

Sarah opened her presentation with a useful definition of community transport stating that “community transport is there to underpin the transport network where it doesn’t adequately meet people’s needs.” Community transport is not a free service and is designed to support people, helping them to participate in their normal day-to-day activities in areas such as education and training, employment, health appointments and shopping.

Community transport is designed to feed in to the public transport network with three types of provision in Powys:

Dial-A-Ride

Ten Dial-a-Ride schemes operate in Powys provided by mini buses and MPV accessible vehicles (Multi Purpose Vehicle). Dial-a-Ride provides a door to door service, usually within a 10 mile radius where users are not able to use their concessionary passes. Membership schemes are usually available.

Community Car Schemes

These make use of of volunteers' cars with the travel costs being reimbursed. Not all community car schemes are membership based with trips often being to the hospital or longer, out of county journeys. 


Taxi Card Schemes

Currently there are two taxi card schemes operating in Powys. People in Montgomeryshire are supported with tokens of between £50-£100. The main issue with the schemes is a lack of taxi services in the area. Membership schemes are usually available where the service operates and often can be used within a ten mile radius.

Group Hire

Some third sector organisations offer group vehicle hire services, some offer a driver, with others you have to provide your own.

Powys Community Transport can support groups and communities in many ways. In the year 2018-2019 community transport has assisted people to make 5,778 trips to community hospitals and approximately 30,000 social and pleasure trips, to give just two examples.


Our next Dementia Network day is provisionally planned for Wednesday 17 January 2019 in Llandrindod Wells. Sign up to the Powys Dementia Network and find out about future Awareness Days by emailing sue.newham@pavo.org.uk or ringing 01597 822191.