Staying well during lockdown - what are we doing?

by Owen Griffkin, Participation Officer

Artwork by Sarah Dale, Mental Health Individual Representative, for the Isolation Art Challenge

As we near the end of April the COVID-19 lockdown has been extended until mid-May at the earliest. We have all had to adapt and change our routines to keep ourselves safe, and this has meant new ways of coping with the stresses of isolation. One of the enduring themes to emerge from this crisis is the ability of people to make the best of what they have in their homes and surrounding areas to stay mentally and physically fit. It’s not easy though and sometimes it is good to look elsewhere for inspiration, so that our daily routine doesn’t start feeling like ‘Groundhog Day’. 

We thought we would catch-up with friends and colleagues of the Powys Association of Voluntary Organisation’s (PAVO) mental health team and find out what they have been doing to cope with the lockdown, and maybe give you some more ideas to change up your routine.

Clair Swales - Health and Wellbeing Team Manager, PAVO

Since COVID-19 I have re-started with my weightlifting efforts. I was getting into a rut. Returning home from work I needed to switch off and get into home mode and weightlifting has really helped! As soon as I get in, I say a quick hello to the family and then get changed. If I hang around for too long I end up sitting on the sofa and then I find it difficult to get going again.

Weight lifting helps me to channel my stress levels and reduce any anxiety. I put the music on loud (I find rock music helps and that's not my normal ‘turn-to’ in music taste!); focusing on form and challenging myself to improve each week gives me closure on the day's work. I find that even after a short training session I can shut off my work brain until the next day.

You won't see me competing in weight lifting that's for sure but for me personally I see the benefits of reduced stress, improved sleep and increased energy levels. Don't be afraid to try it even with light weights, or improvise with cans of beans!

Here's an article on weight lifting and wellbeing.

Joy Garfitt - Assistant Director Mental Health Services, Powys Teaching Health Board

Rhodri & Nerys - two of Joy's lockdown companions

I am one of the residents of Powys who has received a letter from Welsh Government encouraging me to ‘self-isolate’ so that I may be ‘shielded’ from catching COVID-19 (hopefully) – however this doesn’t mean that I needed to become a hermit and enter the world of daytime TV!

Fortunately, my job in the NHS lends itself to being able to work from home during this time, although I miss my normal contact and conversations with patients and colleagues. Thankfully, enter the world of Skype, Zoom, Facetime etc. which has enabled me to keep in contact with colleagues, friends and family – we have even set up a weekly Mental Health ‘virtual coffee morning’ where we can have an informal catch up, and compare our collective need for access to a hairdresser and get a break from self-isolating, homeworking and the endless amount of video conferences.

I have been making the most of my daily exercise allowance and have been regularly heading out on my bike and taking in the beautiful sights of rural Radnorshire. Thankfully, our rural lanes are perfect for not seeing anyone and the excellent weather has provided the motivation I needed, along with my two companions, Rhodri and Nerys.

Lucy Harbour - Mental Health Participation Manager, PTHB

Two weeks into homeworking I found myself getting a bad back and feeling generally uncomfortable. After a spontaneous visit to a famous online retailer I bought myself a hula hoop to try and get me moving a bit more and inject a bit of fun back into my days – and I’m so glad I did!

Now, after a long day sitting at the desk I can get out in the garden and hula hoop to my heart’s content (and neighbour’s horror!)

Millie Griffiths - Occupational Therapist on Felindre Ward, Bronllys Hospital, PTHB

During the lockdown I have been trying to continue to engage in hobbies to fill my time and to provide me with a focus. Usually I would play football but can’t so have taken up gardening. I had little knowledge of gardening before but I seem to be doing something right as the plants are growing!

Russell Pearce - Kaleidoscope Peer Support

My name is Russell, I am an addict and sufferer of mental health problems. I am also an ex-professional boxer. I have built a gym in my garage to help me relieve stress. Exercise takes me out of my head and I feel at peace. Stay active, stay safe.

Sarah Dale - Individual Representative on the Powys Mental Health Partnership

During this lockdown it is not surprising that my mental health, like many others, has got worse. Routine has gone out of the window, and my ability to do my go-to distraction technique, knitting, has gone with it too. So I started off by spending my time playing Resident Evil games on my laptop, scrolling Facebook, sleeping and binge-watching Netflix. 

On one of my many Facebook scrolling sessions I found a Facebook group called the Isolation Art Challenge. There was a list of 30 days with 30 different teams (the list has now been expanded to 60 days). You can take as long as you want completing each piece and you CAN do them in any order if you fancy, and post your finished pieces in the group. I thought I would use this as an opportunity to practice using my Promarkers (alcohol-based graphic makers). It has given me a goal to complete, distraction, a community to share with and something to pass the time. People seem to love my work, and have messaged me to let me know they look forward to my art popping up on their Facebook timeline. I have also had requests from people to draw portraits. I decided to start an Instagram account just for my art. Who needs exercise when you have most of the day to perfect a masterpiece! (joking! do get some fresh air).

Freda Lacey - Mental Health Partnership Manager, PTHB

My usual practice, meditation, mindful wood walking, gardening/planting veg, feeding the birds/listening to the amazing bird song, quilting/getting on with projects left in my cupboard unfinished, writing letters and cards to family and friends, learning to paint (with Bob Ross!).

Jess Tanner - Green Minds Facilitator, Brecon Mind

As the weeks in lockdown go by and as the days start to blend into one another I have been seeking ways in which to bring more attention into my daily life. Spring is such a dynamic and exciting time in nature and I have been leaning more and more into my practice as a gardener and a walker, trying to find some stillness within to notice and learn more about this changing world around us. 

At the beginning of April I started a “Phenology Wheel” as a way to document the events taking place in the natural world, within my garden and along the walks I have been taking. Creating the wheel has helped me to stay connected to the realities within myself and my local area, as well as making me feel hugely grateful for the landscape that surrounds me, filling each day with something new.

A Phenology wheel is a circular, daily calendar that encourages a regular routine of nature observation. It requires very few resources, just a paper and pen.

Have a look at the Green Minds project.

Em Charles - Green Minds, Brecon Mind

I find journaling useful when overwhelmed by unhelpful thoughts. Writing things down can help shift our worries from inside our heads to the outside, giving them space to be reflected upon. It can also be used creatively to express your feelings, through art, poetry, photography and collaging, so can become a nice record of our experiences day to day.

Here’s is a great how-to video on getting started with journaling. 

There are some great suggestions and links above, but we really want to hear what you have been up to. Please reply on our social media (Facebook or Twitter) or below this blog and let us know the activities you have been doing to keep physically and mentally well during the lockdown. If you have photos even better!

Or you can email us at mentalhealth@pavo.org.uk or call 01686 628300.

#StayHomeStaySafe

Green Minds Ecotherapy Project - South Powys

by guest author Jess Tanner

Green Minds is Brecon & District Mind's new Ecotherapy project which launched this winter. As a fledgling project we are in the process of developing a range of nature-based initiatives that are rich in social and therapeutic value, and aim to reduce social isolation and increase the quality of life for our group members and the local community.

Our project's aim is to help our members to build a stronger connection and sense of belonging to the local environment by exploring the local landscape through mindfulness and nature-connection walks. The project will also help people to create new links within the local area through volunteering roles, and provide opportunities for our members to build self-confidence, self-reliance and new skills.

Our activities are currently taking place at Brecon Cathedral where our project is working towards the design and development of more wildlife friendly planting within the garden areas of the cathedral grounds. We have also started work within a walled garden in Brecon this month, preparing the polytunnel for the seed sowing ahead.

We also have lots of woodland mindfulness walks and craft activities coming up over the next few months. These include willow weaving workshops led by a professional basket maker as well as a bird box making session as part of February's national bird box making month.

We are now open to receive new referrals from within the community for those that feel being part of the Green Minds project will be of benefit to them. Please get in touch for more details.

When asked what mattered most to our members after the Green Minds' sessions their responses were:

“Working with other people and being able to see the end result. I feel less worried, being outside helps clear your mind.” - Sarah

“I felt uplifted when we took a step back and looked at the results of our graft. It's good to interact with others and be outside doing something good.” - Rich

Jess Tanner - Project lead biography

As well as working for Brecon & District Mind as a Community Wellbeing Support Worker, Jess leads the new Green Minds Ecotherapy Project, delivering horticultural therapy and community gardening activities for adults. 

Her background includes working within the creative arts therapies, outdoor education and life long learning. Jess undertook her horticultural training over a one year WRAGS placement (Women retraining as a gardener scheme) in the Black Mountains and also holds an Award in Social & Therapeutic Horticulture with Thrive. 

Jess is passionate about facilitating opportunities that help people to access gardens and green spaces and build stronger relationships with the local area and surrounding landscapes.

Emma Charles - Co-project lead biography

Emma is a Nature Based Facilitator offering ecotherapy and social and therapeutic horticulture in and around the Brecon Beacons and Black Mountains. 

Her background is in social care provision, having worked in the third sector for over 10 years. Emma has recently joined the Green Minds Ecotherapy Project and her hope is to raise awareness of the importance of the natural world on our mental and physical wellbeing, and to bring people into a closer relationship with their natural selves whilst cultivating a deeper sense of appreciation for the beautiful environment they live in here in the Brecon Beacons.

You can find out more about the Green Minds Ecotherapy Project by contacting Jess Tanner at Brecon & District Mind, email: Jess.T@breconmind.org.uk or ring 01874 611529. Jess works Wednesdays and Thursdays.

Introducing our new Head of Health & Wellbeing - Clair Swales

Clair Swales recently took on a new role at Powys Association of Voluntary Organisations as Head of Health & Wellbeing after previously working as Senior Officer Community Connectors & Info Engine Wales. She originally started work at PAVO in 2016 as a Third Sector Broker & Info Engine Officer and has since overseen the development of the hugely successful Community Connectors’ team within the organisation as well as further developing the online services directory infoengine. We met up with Clair recently to find out more about her new role.

Tell us more about your new role as Head of Health & Wellbeing at PAVO

My role is to facilitate positive relationships between Powys’ Third Sector and the Public Sector in the field of health and wellbeing, enabling third sector involvement in the development of policy and partnerships, championing a joined-up approach to commissioning of services and developing and maintaining effective service user and citizen engagement.

The role incorporates supporting the Health and Wellbeing team, overseeing the work of the Community Connectors and Powys Befriending Service and contributing to the management of PAVO. I also share responsibility with the CEO for the development and delivery of infoengine.

How is the new job going so far?

I began my new post in December 2019 and the first couple of months have been very busy indeed. In January I was delighted to welcome Sharon Healey as the new Senior Officer for the Community Connectors and Powys Befriending Services. It's been fantastic to get to work more closely with a larger team of PAVO colleagues and to continue working with the sector, health and social care colleagues albeit in a new remit.

Clair (2nd from R) & PAVO colleagues saying #HelloYellow on World Mental Health Day 2019

Can you - briefly - sum up the work of the three different PAVO teams you head up - Health & Wellbeing, Community Connectors & Powys Befrienders

Health & Wellbeing - the team supports Third Sector organisations working in the health and social care fields to work closely with the Health Board, County Council and others to develop better services for Powys’ people. It provides an important mental health information service, supports the delivery of health and well-being information via various mediums, and recruits and supports citizen reps for a variety of boards, as well as facilitating networks such as the Powys Advocacy Network.

Community Connectors - The service helps people in Powys (aged 18+) and their families or carers, to access community-level services and activities that will help them maintain independent lives and which help prevent their circumstances deteriorating to a point where they might need higher level health or social care services.

Powys Befrienders Service - Powys Befriending Service helps improve the independence of people over 50 by helping maintain social networks and remain in their own homes for as long as they are able.

Clair with some of the Community Connectors

Why do you think the Community Connectors have, in such a short time, become such key players in supporting some of our most vulnerable Powys residents?

For anyone who may be vulnerable or facing a challenging time, access to the right information at the right time is essential. Often it can be a challenge to keep on top of the latest information about the support that is available. The Community Connectors have become a key link between statutory services, the client and the sector. This has been driven by the Social Services and Wellbeing Act and A Healthier Wales; and the work with the Regional Partnership Board in delivering the Health and Care Strategy for Powys.

What are the main challenges of your new role?

Juggling time and commitments! With a large team and an even larger number of meetings to attend where I represent the sector, it is always a matter of judging the best way I can support the team and the sector in the best way possible. I like the challenge though and always try to ensure that I make time for my own health and wellbeing and ensuring a good work/home life balance.

Why do you think it is crucial that there is a healthy and robust Health & Wellbeing Third Sector in Powys?

There is a huge focus on health and wellbeing at the moment and in particular early help and intervention. Statutory services have changed immensely over the years and the model for delivery, and financial capability of delivering front line services has also changed. The third sector has a crucial part to play in our communities in supporting health and wellbeing but the sector itself needs to be healthy and robust, able to adapt to change and given the freedom to deliver what truly matters to people. Funding is always a challenge but I like to challenge funding bodies such as the local authority and Welsh Government to focus on early help and prevention and how this can be funded in the third sector. Volunteers play a huge role in supporting health and wellbeing in Powys so we must do what we can to look after Powys’ volunteers.

Clair with Andrew Davies, PAVO Health & Wellbeing Participation Officer

If you could change one thing in the Third Sector Health and Wellbeing world here, what would it be?

Ooh wave my magic wand……Other than overcoming funding difficulties within the sector, I would like to see more third sector involvement in the engagement and support of children and young people. Powys’ third sector has lost a lot of capacity in the remit of delivering support for children and young people and I think it is vital we play an active part in this area of health and wellbeing, to help support children and families and play a key role in reducing and preventing issues in the future.

Charities and voluntary groups (including PAVO) increasingly work more closely with statutory providers of health services - how do you think this will affect the sector from the tiniest local groups to the national big charity players?

I think the biggest challenge here is meeting demand. The SSWB Act has a focus on support close to home but we need to ensure that support for these organisations and groups filters right down to the smallest provider. The close work with statutory partners is certainly a positive step forward but I think there needs to be greater understanding of the role of the sector, in particular the smaller groups, that the sector cannot survive on thin air and it shouldn’t be the place to cut funding.

The Social Value Forum is really starting to see small groups and charities benefit from a small amount of funding that can make a big difference in the community. Sustainability of third sector services is always an issue. Powys is heavily reliant on the outstanding work of volunteers but there is only so much volunteers can do and only so much time to give for volunteering as we all work longer. 

Sharon Healey (L)  new Senior Officer for the Community Connectors &
Powys Befriending Services with Clair

How do you see co-production* working successfully in Powys to provide quality health services for all and what is PAVO’s role in this?

We have had some really positive discussions with third sector agencies such as Credu about co-production in Powys. I feel it's really important to include the service user or community’s views to shape services and this needs to be in a constructive and positive manner. To truly enable co-production we have to break down bureaucratic barriers and this can be a big challenge when working with statutory partners as they have their statutory duties to fulfill. Remove the barriers and let the sector work together with communities to shape future services.

PAVO can play an active role in bringing people together, ensuring the citizen and sector’s voices are heard at statutory level, and influence decision making on behalf of the community and third sector. PAVO’s mission is to be a CATALYST of voluntary Action, a legitimate VOICE for the voluntary sector and a HUB of essential information. We are looking at new ways of using the Community Connectors’ community workers’ meetings to co-produce services at community based level as we know in Powys one size does not fit all. It has to come from the community.

Lots of big issues are crowding out the H & W agenda, the Big 4 of Powys’s Health & Care strategy (Cancer, Mental Health, Heart and Respiratory disease), the Loneliness and isolation strategy of the Together for Mental Health new delivery plan. What skills can your PAVO teams bring to the table?

The team has excellent communication skills and the ability to decipher vast amounts of important health and wellbeing information. Using their creative communication skills they make information regarding health policies and wellbeing initiatives easily accessible to the public, and indeed statutory and third sector colleagues. The teams do this through a variety of platforms such as the ebulletins, social media, health lift films, infoengine.wales and by working with people directly; thus meaning there is something for everyone. The team uses a variety of skills to ensure the voice of the citizen and the sector is heard at all levels of the decision making processes. We also benefit from working closely with our colleagues in the development team to support the sector to meet the challenges of an ever demanding, ever changing wellbeing environment.

Clair (2nd from L) at a patient discharge home meeting with colleagues from Third Sector,
Powys Teaching Health Board and Powys County Council

If people identify gaps in mainstream and Third Sector health and wellbeing services - where should they take that information so that the gaps can be addressed?

The Community Connectors’ case management system allows the team to record gaps and unmet need when working with clients. This has proved very useful with our work with the Social Value Forum to identify needs in communities. However this is just one way of recording information, there is a huge amount of information out there and if you speak to residents or people working in Powys communities they know where there are gaps. The challenge is recording it. The team has used the Community workers’ meetings to also record data around gaps and unmet need and if you don’t already attend one of these meetings I would encourage you to do so.

There are a couple of social prescribing pilot projects in Powys. There seems to be a greater appetite for exploring new and innovative ways to tackling some health & wellbeing issues. What are your thoughts?

Firstly I am not sure I like the terminology ‘social prescribing’. We shouldn’t have to be ‘prescribed’ community based third sector services. However people do need to know what’s available to them to support good health and wellbeing. We should encourage and support people to access community based activities where medical intervention is not required. This type of service is designed to support physical activity and promote good mental health.

Have you taken inspiration from others in the fields of health and wellbeing and / or the Third Sector, and if so, who?

I have actually taken my inspiration from my late father. He was very community minded and spent years as a Town and County Councillor always striving to make people’s lives better. Seeing him work so passionately in the community helped shape me and gave me the firm foundations to strive to deliver the very best for people in the work I do today and every day.

Tell us about some of the most rewarding work you have done at PAVO

Supporting the growth if the connector service has been very rewarding and being shortlisted for an NHS Wales award in autumn 2018 was definitely a highlight. But listening to the difference we can make to people’s lives and to the communities of Powys is always heart warming. I am very clear that without the third sector in Powys the county would be less vibrant.

When you’re not working how do you enjoy spending your time?

My spare time is undoubtedly dedicated to my family. I live with my husband (pictured above on my wedding day) and I have three children and two step children. I am normally running around with various items of sporting kit from rugby to football to horse riding gear. I am very proud of the children and enjoy being on the sidelines cheering them on. I also love cooking with my husband. That's my daily de-stress hour when I get home. I enjoy going to concerts (Bruce Springsteen has to be one of my all time favourites along with The Rolling Stones but I would love to see Sir Tom Jones in concert too). I love walking the dog and getting out into the mountains. Getting fresh air into my lungs helps me to feel grounded and reinvigorated.

BIG thanks to Clair for telling us more about her new role. If you'd like to contact Clair then you can ring 01597 822191 or email clair.swales@pavo.org.uk

*Co-production means delivering public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours. Where activities are co‐produced in this way, both services and neighbourhoods become far more effective agents of change.

Definition developed by the New Economics Foundation (NEF) and Nesta, in partnership with the Co-production Practitioners’ Network

Powys Dementia Network – starting off the new decade

Powys Dementia Network continues to meet at least twice each year in different parts of the county. We wrote about the summer 2019 day, where we were treated to a surprise visit from the children taking part in Hafren School’s intergeneration project, here.

The first event of the new decade took place in January 2020 at Crossgates near Llandrindod Wells. Sue Newham, who is an Engagement Officer in the Health and Wellbeing team at PAVO, helped organise this latest day, and reports back for us now on how the network is growing and evolving to try and meet the varied needs of those attending and looking to find out more about dementia initiatives across this vast county of Powys.

The Powys Dementia Network aims to bring together those living with dementia and their carers, and third sector and statutory organisations providing services for these people. It is funded by Powys Association of Voluntary Organisations and Dementia Matters in Powys.

Getting the balance right has always been an issue, as the needs of organisations who attend and have a table on which to display their literature, are different to the needs and desires of those living with dementia. The number of individuals attending has always been smaller: 3 in February 2019, 6 in July 2019 and 6 in January 2020. Overall attendance varies between 28 and 42. Venues cycle between north, mid and south Powys and the events are held every 6 months. 

Deborah Gerrard, Chief Officer of Dementia Matters in Powys

The general structure of the day has evolved, and with strong input from Dementia Matters in Powys, the last event included a period of practical activities, including drumming, art and story-telling. People could refresh themselves at a “water bar” with a selection of waters flavoured with fruit, and there was the opportunity to experience virtual reality trips to the beach and the countryside. These activities enabled people to chat and share their stories, and proved a very popular part of the day.

Feedback from the last event was very positive with more than half of the participants rating it as excellent and the remainder rating it as good. No one rated it lower.

Positive outcomes for Jane (not her real name):

By attending the last two Dementia Network events, Jane has heard about the many services available to support older people, including those with dementia. She has become more able to discuss the possibility of dementia in herself and has expressed more contentment as a result of this.

Jane had displayed growing levels of frustration with lapses of memory, and was prone to talking negatively to herself about being “a silly old woman” and telling herself off for lack of concentration. By hearing from others living with dementia, and getting used to the term dementia in her own life, she is more positive about herself, realising that she can’t simply “pull her socks up” and perform better. She is more at peace with herself.

As a result of hearing about the “My life, my wishes” booklet at the Dementia Network, Jane has started completing this with her family. She has also made provision for powers of attorney covering finances and health and wellbeing.

After attending the Dementia Network in Newtown in July 2019, Jane felt able to speak at the January 2020 network event, which is something she has not been used to doing before. Participants were impressed by her desire to carry on with her life and to live as independently as she could for as long as she could.

Lucy Taylor, PAVO Community Connector

Positive outcomes for Lucy:

Lucy Taylor is the Community Connector for Llandrindod and Rhayader and also attended the day. The network is invaluable for her – “I’m able to catch up with people I’ve not seen for a while due to everyone being so busy! The mix of people attending, from those living with dementia to practitioners, and others on the side, is really very good. I also picked up two referrals on the day and am providing ongoing support to these new clients.

I thought it was particularly powerful to hear two people speak about living with dementia, and others have said how brilliant that was. People hear the word ‘dementia’ and start thinking – that’s the end of everything and I’ll just forget things now. But for most people it is a much longer journey and they live with dementia for a good period of time. So this was a really positive message to come out of the day. By speaking they also raised awareness of how they first became aware of small signs of dementia which occurred in their daily lives.

There were some fantastic activities on the day, such as the drumming and the water bar. And they all had a purpose, they weren’t just random activities. So, for example, the drumming was obviously social but also that kind of rhythmic tapping is very calming, whilst the water bar brought home the message that you need to stay hydrated to keep in good health!

It would be really great to try and bring in people from the smaller communities in the county at future events too if at all possible”.

The next Powys Dementia Network event will take place in Brecon on 15 July 2020. If you are interested in finding out more then please contact Sue Newham by emailing sue.newham@pavo.org.uk or ringing 01597 822191.

Sharing power - in the planning and reviewing of services

Just before Christmas 2019 I attended this training event in Llandrindod run by my two Participation Officer colleagues – Owen Griffkin (Mental Health - above) and Andrew Davies (Health & Wellbeing - below).

The aim of the day was to build the confidence, knowledge and skills of participants, some of whom were already volunteering as citizen or individual reps, so that they could effectively participate in the planning and reviewing of services with public bodies. Citizen reps volunteer their time, energy and passion to make a difference for others and to the services we receive, and are helping influence change at local, regional and national levels.

Some of the participants are citizen reps on the Powys Mental Health Planning & Development Board, whilst others regularly sit on the Powys Regional Partnership Board.

Setting ground rules for the day

The key learning of the day was around: 

• Communicating confidently and effectively in meetings.
• Knowing where to access relevant information.
• Better understanding the process and procedures involved.
• Better understanding the public bodies involved.

As people introduced themselves at the start of the day it was really interesting to hear the views of those in contact with services, and others who had been citizen reps for some time already:

“Although organisations are individually very good, together they shall never meet.”

“I like to become a thorn in people’s sides. I enjoy arguing the point although I can accept both ways. A 360 degree view of services is so much better.”

It’s not possible to cover the full extent of the training in a short blog post, so I shall just highlight some of the particularly interesting discussions which took place on the day.

Representing other people

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

One of the reps spoke about how he represents his own experience as a carer, but also takes stories with him from local carers’ groups that he attends. “You need to be mindful for it not to be just about yourself but to cast the net and make the representation whole. You are in effect a Citizen Rep (representing a group of people with a common interest) but also a Representative Citizen (giving your own opinions)." 

Another participant said: “It’s really hard to put yourself to one side. Sometimes you might be putting a viewpoint forward that you don’t believe in. It’s about delivering it in way that doesn’t put people off, or bore people, or become too personal.” There are some very polarizing issues about the medicalisation of mental health, for example, but it is important for a rep to balance any views s/he may have and give the other side as well.

Understanding other people’s context

Another experienced citizen rep pointed out that certain things cannot change. 

“There is no point banging your head against a brick wall that can only be changed from the top down.”

When things don’t go well – and when they do

Sometimes it can be easy to ask – “why are we here if we don’t have any influence?” It was felt that some meetings were a waste of time, and only “tick box” exercises. “Sometimes the public body will just move on to the next item on the agenda as if we have not spoken. We have been invited to speak, but it sometimes feels just so that they can tick that box.”

Someone representing a local charity described how it took her three years to be heard within one public body. But eventually her persistence paid off, and the organisation was finally able to achieve some funding for a much needed project.

It was, though, also agreed that sometimes staff within an organisation may also be struggling with the slow rate of change – but sometimes the decision making process, and the accountability attached to it, require that change to go through and be agreed by many different committees.

New reps often have very high expectations in the early days, but these need to be managed from the start.

“Don’t promise the earth. It’s the small steps that are important. And publicising the success stories.”

You said, we did

Everyone agreed on the value of prompt feedback from the boards about progress. “Even if that is – we’re still driving this forward but we haven’t got anywhere yet.” Otherwise there is an understandable tendency for people to think – “what’s the point?”

The mock meeting

In the afternoon we were pleased to welcome our former colleague Freda Lacey, now Partnership Manager Mental Health at Powys Teaching Health Board, to chair a mock meeting designed to put into practice all the learning from earlier in the day. It turned out to be an extremely interesting and valuable exercise.

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

And finally…

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

Alcohol dependency and families

Blue - from the Kaleidoscope Project exhibition - information below

by our guest author from North Powys

It was recently Alcohol Awareness Week and there were lots of stories and comments online about the effect alcohol dependency can have on society. This got me thinking about my own experience and I wanted to write down my thoughts and share my story to help people understand what is like for the families affected by alcohol dependency.

So, let’s start by looking at what exactly alcohol dependency is.

"Alcohol dependence, sometimes known as ‘alcoholism’, is the most serious form of drinking problem and describes a strong, often uncontrollable, desire to drink.

Drinking plays an important part in the day to day life of alcohol dependent people, which could lead to building up a physical tolerance or experiencing withdrawal symptoms if they stop."

The reason I use the above quote is because all too often nowadays people believe that alcohol dependency is a choice. No. No. No!  Alcohol withdrawal is one of the most dangerous and painful of all the addictive substance withdrawals with some awful symptoms such as hand tremors, sweating, nausea, hallucinations and seizures.

The incident that finally led to my mother’s recovery started with a seizure. She was trying to do the right thing but ended up having seizures. I didn’t live at home at this point, and I got a call from my mother’s boyfriend nonchalantly informing me she was having a seizure. I screamed down the phone whilst running home. I called an ambulance and she went into hospital. It was horrifying but she was released and went into rehab. I found out later that she had been given three months to live.

Does that sound like she had a choice?

Then you hear the other argument people often come out with.

"But when someone starts drinking then surely that’s their choice?"

What they don’t know is what happened to start that person drinking. I suffered from anorexia and self-harm. When I was severely ill would you blame me? After all it was my choice to stop eating. Or when I turned up at the A+E department needing to get stitched up, embarrassed and ashamed after self-harming, am I a waste to society because I did it to myself? Unless you have no compassion or empathy the answer is no. 

I struggled with these issues because I was abused. I believe that my mum’s guilt for not realising what was happening to me was one of the reasons she began drinking unhealthily. I was very ill with my own mental health when my mum found out she was pregnant again. My brother had his own issues which didn’t help and she had a new-born to look after. She was struggling. Who wouldn’t be? Everyday stresses, job worries, financial issues, a mentally-ill child who was stockpiling pills and running away. It was no surprise when she was diagnosed with post-natal depression and sent away with a supply of pills and an appointment with a doctor in a few weeks. A can of lager in the evening was the norm.

It’s so gradual. It’s hard to pinpoint when it became a noticeable problem. That can of lager in the evening becomes a few more, a bottle of wine a day which becomes a bottle of vodka. She was very good at hiding it. She drank to hide her anxiety. Every time she left the house she had a panic attack so she found a coping mechanism to continue to function. And it worked. For a while. We had no idea, we knew about the anxiety but she was ‘out and about’ so that was ok. However, we started to notice she was drunk more and more often and empty bottles were turning up around the house. That’s when it came to a head and we all knew she needed help.

People can forget about those who are around an alcohol dependent person because of the stigma involved. It becomes a family secret and if you do try to reach out people don’t know what to say. It can be incredibly isolating. I would dread coming home as I didn’t know what I would find there. Mum usually passed out, us having to make tea and look after my sister. If she was awake there might be a huge row between my mum and her boyfriend whilst I had to try and keep peace for the sake of the children. I felt responsible and that I had to keep it all together. I was taking time off college to help look after my baby brother whilst my mum was drinking. I would attend the parent evenings, and I was always the one who people offloaded their problems on. My mum, her boyfriend, my brother. I was there for them to vent at, but there was no-one for me to turn to. 

It was soul destroying at this time seeing my mum going to the doctors, begging for help. She was referred to the local Community Mental Health Team but was discharged after two weeks because she ‘didn’t want to help herself.’ I was missing college, and I was continually stressed and glued to my phone. I went to a GP. This was the same GP that had prescribed Diazepam for my mum for her anxiety which she was now dangerously mixing with the alcohol. I told him what was happening, and how stressed I was, and I hoped he could do something for my mum. He called the child protection services, which unsurprisingly left me unpopular with my family after that, adding to my poor mental health.

I used Google to find out about a national organisation called National Association for Children of Alcoholics (NACOA). I sent them a lot of emails and received good advice and support back from them. I saved the emails, and re-read them when I was struggling. Those emails got me through some dark times and difficult choices.

I am very lucky that my mum was finally able to get the support she needed. She made a full recovery with very little damage to her body. I am so proud of her as it is a huge achievement. Not everyone is so lucky. Some people cannot access treatment because they don’t have a permanent address, or the health professionals they are in contact with don’t understand their illness. They might not have the support or strength to recover.

A big issue is with dual diagnosis. If somebody is diagnosed with depression and alcohol dependency you need an assessment to access the service. To have the assessment you need to be sober. Do you see the issue here? It’s a vicious circle where the cause of the problem can’t be treated until the problem has been treated. But the alcohol dependency can’t be ‘cured’ until the depression is. One feeds the other and we need to understand this more as a society.

The idea that ‘they did this to themselves’ is so instilled in society that when someone tries to recover they are turned away. We need to fight the stigma and celebrate and nurture recovery.

Photographs

The photographs in this blog post feature artwork from a Project Kaleidoscope exhibition held in May 2019 in Newtown in Powys. Kaleidoscope is a charity which seeks to tackle the stigma that people with drug, alcohol and mental health issues face.

The exhibition was inspired by using forms of art in individual care plans to address drug and / or alcohol use. Service users and volunteers worked together to develop the display at the Oriel Davies Gallery, which showcased the creativity of individuals who had accessed support for substance misuse at some point in their lives. What their work has in common is how creative activities have played a significant role in exploring emotions, reducing anxiety, improving a sense of self-worth and helping to resolve other psychological conflicts.

Sources of support

Kaleidoscope Project - 01686 207111

Alcoholics Anonymous - there are regular meetings in Brecon, Newtown & Welshpool

National Association for Children of Alcoholics - 0800 358 3456

Drinkaware - 0300 123 1110

Compassionate Mental Health conference, Hereford, November 2019

by Sue Newham

Health & Wellbeing Engagement Officer, PAVO

I went along to this conference with only a vague idea of the content, but being told by my colleagues at Powys Association of Voluntary Organisations that it would introduce me to some new ideas and give me plenty to think about. They were right!

I was asked on arrival if I’d come to do the yoga. I hadn’t, but it was certainly a novel start to the day!

Novelty continued with an opportunity to engage in “Compassion Circles”. Andy Bradley encouraged us to get into threes and listen to each other “with a quiet mind and an awake heart.” Andy’s concern is that our systems, with time pressures and outcomes, can make people feel as if they don’t really matter. Really listening to people can change their feeling of being valued for who they are.

The keynote speaker was Robert Whitaker, author of books about mental health treatment called “The anatomy of an epidemic” and “Mad in America.”

Robert outlined the history of dealing with mental health issues in the USA. He explained that, in the 18th century, the prevailing view and practice was to treat people experiencing mental breakdown as having lost their humanity. Sufferers were treated like animals and subjected to barbaric treatments. At the end of the 18th century, the Quakers set up homes where sufferers were seen as “children of God” and treated with compassion in pleasant surroundings. Records of the day suggest that there was a good rate of recovery following this treatment. In the 1980s, the American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders 3 became the standard handbook of psychiatric diagnosis. It heralded a shift towards the disease model of mental health. Whitaker sees this as creating a line between “normal” people and “abnormal” people, where stresses associated with life become illnesses to be treated.

I found myself pondering the role of the American Psychiatric Association and the drugs companies. Is it likely that companies that have seen a 50 fold increase in income from mental health drugs would be open to other ways of treating people without drugs? If drug companies fund the American Psychiatric Association, which apparently they do, is it possible for that organisation to embrace different treatment models?

Early disease models of mental illness seemed to be based on the theory that chemical imbalances within the brain lead to symptoms of illness that can be corrected by medication. Although the theory had been found as inadequate as early as the mid 1980s, it has still continued as an urban myth. This was a shock to me, as before this conference, I too would have said that mental illness was to do with chemical imbalances in the brain.

Robert Whitaker challenged the prevailing disease model as an effective means of treating mental distress. He said that, if the model was correct, overall recovery rates should now be going up as medication successfully treats people’s illnesses. On the contrary, statistics record that 1.1 million people were on long term disability in the USA due to mental illness in 1987. That number is currently around 5 million. There is also evidence that full recovery is more likely amongst unmedicated groups than medicated groups.

Whitaker’s overall message is that the medication model has not achieved the outcomes expected and has failed to produce scientific evidence that it is improving the mental health of the American public. He mentioned several projects that had shown success in non-medical treatment of mental distress: the Soteria project; the Norway Medication Free Inititative; the Open Dialogue's model developed in Finland.

He suggested that we need to change the script, seeing struggles as a part of being human, rather than a sign of illness which may see sufferers relying on medication for the rest of their lives. He advocated social support, listening and giving people a sense of hope. Psychological therapies also have a role to play in helping people work through traumas and distress. 

During another session, I heard from Margaret Jordan about the benefits and practice of Sensorimotor Psychotherapy, which treats people holistically rather than focusing on the brain. A phrase which Margaret used seems to me to be important and worthy of more thought. She said, “Trauma is an action that needs to be completed in order for the symptoms to reduce.”

I observed an Open Dialogue session in which a course participant agreed to talk about a personal experience and we observed how Open Dialogue can help people to work through difficulties they were facing. The practitioners were Yasmin Ishaq and Rai Waddingham. This was an extremely interesting, but in many ways simple intervention, involving taking time with people and those close to them and listening to them. Yasmin is a social worker and psychotherapist and Open Dialogue lead for NHS Kent. This seems like a very positive way that people can be given time, listened to and enabled to process and work through their difficulties.

I enjoyed listening to Ruth Young from Jamie’s Farm talking about residential weeks for troubled young people, which involve real farm work and responsibilities, as well as group times for talking. This is how the website describes the programme, “Jamie’s Farm acts as a catalyst for change, enabling disadvantaged young people to thrive academically, socially and emotionally. We do this through a unique residential experience and rigorous follow-up programme, combining farming, family and therapy.”

So what was my overall impression of the day? As someone with only one year’s experience in the mental health field (in other words, a complete novice) I found it thought provoking! It challenged some views that I had held as facts, without really knowing why.

It shocked me to hear that people with severe mental illness have a reduced life expectancy, often dying between 10 and 25 years before their peers. The World Health Organisation suggests that some physical illness may be exacerbated by antipsychotic and related drugs.

Overall, it left me with a feeling that profits and big business set the agenda for many of the ways we tackle everyday life. I feel that society has a duty to question why things happen as they do and whether, in fact, science is being manipulated for the benefit of those making the most money.

I also feel that better listening and focusing on the whole person could help many people experiencing mental health issues. “Compassionate” sounds like a good word to describe how I’d like to be treated if I was going through trauma and distress.