Monday, 12 June 2017

At the end of the day...

by guest author Freda Lacey 

“Dying Matters”. This subject was the focus of an entire week this past May. In Welsh, “Byw Nawr”, (Live Now). During this week, I felt drawn to actively take some action on my own Living Now and Dying Matters.

Powys Teaching Health Board (PTHB), along with a number of health care agencies, particularly hospice care agencies, which includes Third Sector, (ie: The Bracken Trust), held various events during the week. The aim was to encourage people to speak openly about death and dying, discuss what advance planning is, and also how to cope with dying, death and bereavement.

Several weeks ago now, PAVO’s Health and Social Care Team held a joint “engagement” session, with PTHB colleagues, the Third Sector and other agencies, exploring cancer and end of life or palliative care. We discussed a number of topics but one of the key themes which emerged was in relation to “Advance Care Planning” which includes “Statement of Wishes and Preferences”, “Advance Decisions” and “Lasting Power of Attorney”. However, the above care planning implies that someone is in health care and/or on a patient pathway of some sort.

I’m not sure about anyone else, but I don’t usually think about my death or the death of people I care about. It seems to me a topic shrouded in fear, perhaps just thinking about it may propel it to happen sooner than I’m ready? I wonder if there is a type of stigma, perhaps unspoken, associated with death? Mostly I reckon it’s about how someone dies. Generally when we hear of someone’s death, we almost always ask, how? Do we then go on to judge what is a good death or a bad death? In what way might this influence our thinking (or not) about our own death experience?

I’ve been reflecting on how we can be affected by someone’s death by suicide, how this can have a lasting effect on us, or if someone dies from alcohol consumption, or cancer brought on by smoking, or dying of a drug overdose. What does this leave us with? Does it leave us with an unexpressed fear in relation to ourselves?

In my family, and whilst living in Powys, I have experienced my fair share of bereavement; my Mum dying when I was turning 12, two of my first cousins who have both died from suicide in recent years in really difficult circumstances, two of my closest uncles who both died from complications due to alcohol dependency, a beloved neighbour who died due to complications of pneumonia. All of them died in ways that could be seen as having had a “bad” dying experience. There is a saying that it is not death we fear, but dying. So, is it the process of dying that matters most to us?

By contrast, I have experienced the death of a very beloved aunt, a surrogate mother. She lived to a good age of 86. She had been in and out of hospital for some time and we all knew she was getting frailer, but when she died at home, on December 18th 2015, we were shocked, but grateful for the “how”. She died in her own bed, waiting for a cup of tea that her husband, diagnosed with Alzheimers and 92, was making for her.

In Ireland, we have a tradition of “waking” our dead and I find this tradition comforting, normalising and healing. For my aunt, we sat around with her, in her open coffin, in the house for a few days before her burial. Friends, neighbours and relatives came to see her, we spoke of her and told stories. We patted her head as we walked past, held her hand, and waved incense around her. We talked with her as if she was listening to us. We ate with her nearby, certainly drank to her (she loved a glass of whiskey), my uncle, her children and grandchildren slept in the living room with her, she was not left alone. For my uncle, this was particularly comforting and allowed us all to grieve, talk about and celebrate her together. It was normalising.

What made the process of her death go so smoothly was our advanced planning, although clearly we didn’t plan when she was to die! Several years ago, we planned a writing their “Will” weekend together where all the family spent time, with much food and drink, planning what they wanted, when they died. Did they wish to die at home, what about resuscitation, where did they want to be buried, music, poems, readings, who did what, even who was to get which of their belongings. They dictated what should happen and we wrote it down. Everyone had a say and “their” say was final. As a result of this pre-planning, which was good fun with much laughter, the process of my aunt’s death was smooth and without drama, well apart from a kerfuffle at the church door when as daughters in the family, we carried her coffin into the church and there was a lively discussion about who was shortest and therefore needed to be in front!

Having thought about “Dying Matters”, I have made a commitment to myself to not only write my will, but also to think about my “Advance Planning”, what this would mean for me and how to communicate this with my loved ones. The aim here is to do this early so I don’t have to worry about it in the future and at just 50+, I don’t yet consider myself to be in my old age, despite some system conditions or national definitions!

I’ve been reflecting on how we spend a great deal of time in “birth” planning, we have our birth plans, we have our mid wives sorted out, we choose how and where we will give birth, we check out the birthing centre and we may choose this over a home birth. Midwifery services give us a choice of having a home birth. We avoid having babies in hospital unless it’s absolutely necessary. How often do we avoid dying in hospital? This too surely is a choice? How are health and social services looking at this, how are people informed about their choice and opportunity to jointly plan for this? It is positive that health and social services are planning for this. The Palliative Care Project Board in Powys, chaired by Alan Lawrie, Director for Primary and Community Care within the PTHB, is helping bring this agenda together. Within some local hospitals, there is a plan to create “palliative care suites”, which will offer people more choice.

Birth and death fuel the cycle of life. I find it interesting that we spend a great deal of time anticipating, looking forward to, planning, speaking about, anticipating with joy a birth, but we avoid so often this process in relation to death. Could this be looked at with anticipation, after all it’s the one thing we cannot avoid, it’s going to happen whether we like it or not? Who do I want with me, holding my hand? Where do I want to die? I can’t predict how, but neither can we in a birthing experience, we can only plan and aim for the best experience, exactly as we would wish. What would our “gas and air” be in relation to dying?

In a recent Befriending Network meeting we spoke about the concept of doulas (or midwifery for dying) and having people, perhaps people trained as dying partners or supporters, sitting with people who are dying, supporting family members. Having sat with a great uncle, who was moving in and out of life having turned 92 in recent years, it was an amazing experience to sit and hold his hand for some hours, just being totally present with him.

Everything whittled down to being acutely aware of the senses, of the here and now. What could he see when he sat up suddenly and fixed his gaze at something I couldn’t, what did he mean when he clutched my hand, was he cold or too hot, did my singing soothe him, did he hear me when I spoke with him about how grateful I was for him in my life?

The meaning of “palliative” is to relieve suffering and we tend to equate this with end of life. But surely “palliative care” means offering this at any time in life, not just when we are dying? Alan Lawrie recently said that “health and care services only have one chance to get it right at the end of life”. He goes on to say we need to encourage people to speak more openly and plan for end of life care.

As I was thinking about dying, by coincidence (and in my opinion, there is no such thing), I came across a TED talk by BJ Miller which has profoundly moved me on death and end of life care. It is well worth the 20 minutes to reflect on this man’s heart stirring message.

Dying matters, it brings us closer to a full life experience and to living now. So, how are you planning one of the most important things you’ll ever experience in life, your dying experience? What really matters to you, in life, and equally of importance, in death?

I can’t finish this without quoting Neil Gaiman and
 Terry Pratchett, heroes of mine, from their book Good Omens. “Don’t think of it as dying, said Death. Just think of it as leaving early to avoid the rush”. Now that truly is anticipation!

Tuesday, 6 June 2017

Jill Ball - speaking up for older people in Powys

After 4 years working in PAVO’s Powys Befrienders’ team, Jill Ball recently started a new role at Age Cymru Powys as an Independent Advocate. Age Cymru Powys is the largest voluntary sector organisation providing support to people over 60 in Powys, Mid Wales, covering the old shire counties of Montgomeryshire, Radnorshire and Brecknockshire.

The organisation works to sustain and improve the quality of life of vulnerable older people in Powys. It believes that older people should be respected and valued as individuals in terms of their dignity, status, personal autonomy, diversity of needs, aspirations and expectations.

I caught up with Jill at her base in Newtown to find out more.

Tell us about your new role with Age Cymru Powys

My role as an advocate is to take action to help people say what they want to say, secure their rights, represent their interests and obtain the services they need. I meet with people daily and listen to the issues that are of concern to them, provide them with information, and discuss with them the options that are available to them. If required I assist them with contacting third parties and written correspondence. As an independent advocate my role is impartial and non-directive. 

What is joyful about the role is that in supporting others to access the services they may need, or by them resolving an issue that has been of great concern to them, they then can continue to enjoy happy and fulfilling lives.

Which areas of Powys do you cover?

My base is at the Age Cymru Powys Centre, Parkers Lane in Newtown. The area I cover is the North of Powys and my colleague Louise Hicks covers the South of the county. I have an advocacy drop-in session every Tuesday 9 - 12.30 at our 
Newtown Centre. If required I visit clients at home or in a care home, wherever they reside.

How is the new job going so far?

I am enjoying it tremendously; the work is varied and interesting, people consult the advocacy service for many different reasons. They may wish to investigate what other accommodation is available to them now that their own needs have changed, which may be due to bereavement or an escalation of care needs. A client may be unhappy about the care they are in receipt of, and need assistance with knowing who to contact and may need assistance with getting their voice heard. I support clients when there may be conflict in their family, to reinforce their wishes.

Who can be referred to the Age Cymru Powys service and how?

The service is free, independent and confidential and is for people over the age of 60 living in Powys. People can self refer into the service or can be referred into the service by a third party, with their consent. 

North/Mid Powys telephone 01686 623707, email : 
South/Mid Powys telephone 01597 825908, email : 

If people have been living alone and isolated for a long time what kind of support might they need?

Someone who can listen to what their needs are, and then to provide them with up to date and accurate information on what is available to them. They are then able to make informed choices whether that be in relation to their health, care, finances or social needs. If they need support to access a service, whatever that may be, Age Cymru Powys is able to guide them through this process.

How can the kind of support Age Cymru Powys offers impact on people’s physical and emotional wellbeing?

People are less anxious and more confident because they have the support and knowledge to face whatever problem they may be experiencing. The service is accessible. People say they enjoy the face to face contact and build up a good rapport with staff members. 

Age Cymru Powys also offers a toenail cutting service throughout the county which is a much needed and well supported service. 

The information and advice service provides benefits' information and assistance in completing forms and with financial security comes peace of mind. Age Cymru provides an extensive range of literature on all subjects relating to older people, from adaptations to their home, to power of attorney information. When people are informed they are then able to make decisions about their future which impacts on their wellbeing.

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

People can become socially isolated which can impact on their physical and mental health. Worst case scenarios could be that people become impoverished as they may not access the financial assistance that is available to them, which could affect their tenancy. They may become neglected as their personal care needs are not being met.

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

Mind Cymru, Community Mental Health Team, Ponthafren, GP practices, other health professionals, Occupational Therapists, Social Workers, District Nurses, Speech and Hearing Loss teams, Care Agencies, Abacare, Red Cross, Action for Hearing Loss, RNIB, Powys Association of Voluntary Organisations, Credu Connecting Carers, Powys County Council, Department for Work & Pensions, Environmental Health, Disability Powys, Citizens Advice, Kaleidoscope, Alzheimer’s Society, Parkinson’s UK, Age UK, Stroke Association, Care and Repair... a long list!

Tell us what an “age friendly Wales” looks like to you personally

One in which all people feel valued. Communities provide services dictated by those who reside there. Where there are no barriers to services. Where everyone has someone to have a chat with and spend time with and where all individuals are celebrated and cherished.

What are the main challenges of the role?

Very long waiting times on the telephone to get through to some services. The distances one has to travel; less travelling time would enable me to see more people.

Tell us about some of the most rewarding work you have done at Age Cymru Powys so far

I have enabled a very elderly lady to stay in the care home of her choice. Supported a lady with hearing loss to solve her internet problems, so that she can email her family in South Africa and keep in touch with her grandchildren. Helped someone to understand all the care and accommodation options available to them, as they were given notice on their rented property. They are now living independently within a complex that has someone on the premises 24 hours a day and should they require a greater level of support in time this will be available to them.

When you are not working for Age Cymru Powys, how do you enjoy spending your time?

I enjoy spending my time in my garden and greenhouse and with my two little grand-daughters, and whenever possible I love a trip to the seaside, particularly our beautiful Welsh coast.

Many thanks to Jill for updating us about her new role. If you want to find out more about the Age Cymru Powys service you can contact Jill by emailing: or ring 01686 623707.

Thursday, 25 May 2017

Introducing Philip Moisson - new Participation Officer

Philip Moisson at Ponthafren Assocation in Newtown
with trustee Jan Rogers (left) and new individual rep Sarah Dale (right).
Philip recently joined the mental health team at Powys Association of Voluntary Organisations (PAVO) to take up the Participation Officer post left vacant when Carla Rosenthal moved on to become a Community Connector. Philip’s face may well be familiar to many readers as for the past two years he has been the facilitator at Powys Patients’ Council. We met up in Knighton during Mental Health Awareness Week and I found out more about his two roles.

Tell us more about your new role as a Participation Officer in the PAVO mental health team?

My first involvements with PAVO were when Freda Lacey was in this role, and I was one of the people who participated in things she invited us to. There were events around ‘service user’ and ‘carer’ representation, an anti-social behaviour and mental health research project, and sometimes conferences too. As well as looking for something productive to do back then, I also learned the value of service user involvement and how this is being taken seriously in some places now. A big part of my task is to support the work of the volunteer representatives who sit on the Mental Health Partnership Board, alongside health board staff, Welsh Government representation and other groups. I will also be looking for other ways to get people involved in meaningful conversations about services.

How is the new job going so far?

It was fairly difficult to adjust to the pressures of working and being responsible for more than just my own wellbeing. There were strong feelings of disapointment in how long it had taken me in my own journey to go from initial diagnosis to a point where I had anything near the right balance of treatment and medication. It also took me far too long to apply for and be assessed for the right benefit support. The way you go about feeding constructively into services around you from that basis is difficult, and involves immersing yourself in other people’s stories and concerns. I’m committed to helping more people make their views known about their own treatment and to supporting our volunteer reps in making common concerns known.

I hear you’ve been out and about meeting people at the Powys Wellness & Recovery Learning Centres?

So far I’ve been making myself known to staff at the main centres in Powys. It makes sense to put time and effort into these links, and to be around the many people as staff, volunteers or members who have expert knowledge of services. I will also make an effort to get to the outreach centres associated with many of these charities, and beyond that I am more than aware that there are people suffering in isolation, and there are important stories to be made known there too.

Wellness & Recovery Learning Centre at Felindre Ward, Bronllys Hospital

What about your other role as Patients' Council Facilitator? Tell us about that.

The model for Patients' Council involves bringing former patients of Felindre Ward at Bronllys Hospital together with current patients, and we hold relaxed discussions about any aspect of life on the ward. We then take any concerns anonymously to ward management and try to work together to tweak or improve the ward as best we can. We have good relations with ward staff, and are still putting work into small funding bids to increase activity levels on the ward.

Who comes to the meetings?

Current in-patients are the only people allowed into our meetings - alongside volunteers Rhydian and John. I facilitate the discussion and make sure we cover the things we need to, and we’ve met some remarkable people who draw on their lived experience for courage. We often meet people at difficult times in their life but sometimes we can manage a smile and a chuckle, and we almost always manage to discuss relevant matters during our meetings.

Give us an idea of some of the issues that come up

Activity levels on the ward are a constant topic, and although we like the work of the current two Occupational Therapists there is still space for more things to occupy patients during their stay. Other things that come up include discussions over the food and atmosphere on the ward. For quite some time we raised the issue of internet access for patients being absent on the ward, but we’re pleased to say that this was brought up to date in recent months.

How did you get involved with Patients' Council originally?

As I mentioned before, I was an interested participant with the PAVO mental health team - at a time when I was deemed ‘unfit for work’. There are many people in this situation currently, and I’m well aware of the dangers of a disability employment gap in mental health. When I started to look at part-time work options again I interviewed for a different role at PAVO and impressed enough to be given a chance with Patients' Council. It’s kudos to my line manager Jane Cooke really, who recognised the value of my voluntary contributions elsewhere and gave me a chance to gain the skills and confidence to attempt paid work again.

What would your ideal mental health hospital ward look like?

The most important aspects would be equality between staff and patients in every way. There’s actually a really good example of a centre designed by ‘service users’ and ‘carers’ in Hafal’s Gellinudd Recovery Centre - and by all accounts it also saves the NHS money. We’ve been positioned to help our own ward develop the garden space it has, and I think that outdoor space is hugely beneficial. To be honest, I really wouldn’t hospitalise anyone - I’d build a large rural retreat where people who are struggling would be made welcome alongside people who are coping.

Have you taken inspiration from others in the field of mental health, and if so who?

I really want to see the new film about the life of Glaswegian psychiatrist R D Laing ‘Mad to be Normal’. There’s something about the spirited challenges to mainstream psychiatry that connect with me, and he did more to be alongside his patients than many can achieve. Also, I like anyone who talks first and offers drugs later.

Tell us about some of the most rewarding work you’ve done in the mental health field

I actually think there are rewarding things ahead. The level of recognition of mental health as a common problem is slowly rising, and there are alternative approaches such as the Finnish Open Dialogue approach gaining real traction in places. If we brought this to Powys one day I’d be delighted. However, in terms of finding something that made a difference to my life after years of instability then the most difficult, involved, but ultimately rewarding work I’ve done, is my own personal course of psychotherapy.

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

I love the outdoors in Powys and beyond, and I also play recreational basketball for fitness and fun. I’d like to spend more time meditating and being calm, but for now standing outside and shooting jump-shots at a basket for ages will have to do.

PAVO mental health team
Back row L-R: Jackie Newey (Information Officer), Philip Moisson (Participation Officer)
Front row L-R:  Jane Cooke (Senior Officer Mental Health), Melissa Townsend (Participation Support Worker),
Anne Woods (Participation Officer).

Tuesday, 16 May 2017

Dementia Awareness Week 2017

Hot on the heels of last week’s Mental Health Awareness Week comes this week’s Dementia Awareness Week, 14 – 20 May. There are 45,000 people living with dementia in Wales and the charity Alzheimer's Society Cymru is encouraging everyone to 'unite against dementia’: “Dementia is set to be the 21st century’s biggest killer. But together we can raise awareness, offer help and understanding, and urgently find a cure.”

There’s a lot going on in Powys this week but this blog post is just going to focus on a couple of initiatives that are running to help support people living with dementia in the county.

Dementia Friendly Shopping

Jeni Hall, who is the PR Ambassador at the Sainsbury’s Welshpool store, recently got in touch to tell me about the Dementia Friendly Shopping initiative which started at the store earlier this year. Jeni explains:

“At the end of last year, we pledged to become a Dementia Friendly store. Since then, one of our colleagues has become a volunteer Dementia Friends’ Champion and delivers Dementia Friends Information Sessions to all other colleagues.

We have now committed to having a Dementia Friendly Shopping Time once a week on a Wednesday between 2 - 4pm.

All colleagues working during this time will be a Dementia Friend, and will be available to assist anyone who needs help. Stock cages will be kept off the shop floor, tannoy announcements will be kept to a minimum, black mats at the front of store will be replaced with green mats, chairs will be available and we will have a ‘slow checkout’ to use. We have also put coin identifying cards on our tills to help with recognising the different coins.

Everyone is welcome to shop during this time”.

Dementia Friends’ training for the PAVO Powys Connectors’ team

The Alzheimer’s Society’s Dementia Friends programme is the biggest ever initiative to change people’s perceptions of dementia. It aims to transform the way the nation thinks, talks and acts about the condition. Dementia touches the lives of millions of people across the UK. Dementia Friends was launched to tackle the stigma and lack of understanding that means many people with the condition experience loneliness and social exclusion.”

Carol Hay and Suzanne Iuppa

I joined a PAVO Dementia Friends’ training session yesterday at the start of Dementia Awareness Week. Staff in the Powys Connectors team were being trained by PAVO colleagues Carol Hay (Health & Social Care Engagement Officer) and Suzanne Iuppa (a Powys Connector based in Llanidloes). 

They started the session by asking us to write down the first word which came into our heads when thinking of dementia. Some of the words we came up with included: Scarey. Mum. Numbers. Old age. Memory. We all spoke about our words… some of the stories were already very personal and moving… we discussed initial perceptions… the way dementia is handled by the media… how we are constantly bombarded by dementia stats… and whether our words had positive or negative connotations.

Playing a game of Dementia Friends’ bingo we learnt more about the “Five things you should know about dementia.” The discussion that followed led to yet more personal stories, about family members with young onset dementia, about some of the many other different types of dementia (yes, the numbers: over 200 sorts apparently) and how twiddle muffs can help bring down levels of frustration amongst people living with dementia.

We pondered over why people might delay going to see their GP if they started to experience problems with their short-term memory. Perhaps they would be fearful of having a diagnosis and the implications of that… what it would mean to their day-to-day lives… their jobs if they were in work… how their friends and family would react….? But the sooner someone is diagnosed the sooner adaptations can be made by themselves and those around them.

Dementia Friendly Communities are being developed all around Powys so that people can be more supportive of others living with dementia and to help remove the stigma. We wrote about some of these communities in the North and the South already.

Time for the next exercise at the Friends’ training session. This involved working in pairs to write down all the steps required to make a cup of tea! As a non-tea drinker, who never gets it right brewing cuppas for family and friends, this sounded like it could be useful to me too! Between us we had anything from 20 – 35 steps, depending on whether herbal teas and hand-knitted tea cosies were roped into operations!

Following the exercise we discussed how action could be taken to help people live life more independently. If a person living with dementia was trying to boil water in an electric kettle on a gas hob then maybe it was time to consider choosing a new whistling kettle rather than a residential home placement. We learnt that there is a property in Christchurch Court, Llandrindod Wells where assistive technology is on display – contact Powys County Council at the Gwalia in town for further information.

And we rounded off the day with two analogies…. First thinking of the brain like a set of Christmas tree lights – they might go out, or flicker, or dim, but in no particular pattern. And secondly, as a bookcase… the most recent memories are on the top shelf, with those from further back towards the middle and the base… when the bookcase starts to rock it’s those books at the top which tip first… so someone living with dementia might be living in the fifties or sixties on a day to day basis… which is where contact with memory boxes can be so valuable.

If you are interested in becoming a Dementia Friend or Champion there is a training session with the Alzheimer’s Society at our offices in Llandrindod Wells on Thursday 1 June. You can find out more on our website.

Meanwhile, what have you been doing for Dementia Awareness Week? We’d love to hear from you in the comments box below.

Wednesday, 10 May 2017

Mental Health Awareness Week 2017 - in Knighton

Yesterday Phil and I set up an information stand in Knighton Library to coincide with Mental Health Awareness Week 8 – 14 May. The annual awareness week has been hosted by the charity the Mental Health Foundation since 2000 and previous themes have included relationships, mindfulness and sleep deprivation. This year’s theme is Surviving or Thriving?

“We all have mental health. Good mental health is an asset that helps us to thrive. This is not just the absence of a mental health problem, but having the ability to think, feel and act in a way that allows us to enjoy life and deal with the challenges it presents. Yet it can be easy to assume that ongoing stress is the price we have to pay to keep our lives on track. It is time to challenge that assumption”.

Following the sad loss late last year of a young man to suicide in the Knighton area, local people have been keen to raise awareness of the support that is available to people experiencing emotional distress of any sort and for any reason. Carla Rosenthal, who was at that time a Participation Officer in our team, and lives in the area, has been working closely with local organisations such as Knighton & District Community SupportVolunteering on Prescription and KINDA (Knighton Initiative for Dementia Action), along with the people of Knighton, to help organise activities:

“Events through MHAW aim to unite the community in Knighton through music, socialising and TALKING! Many local businesses are to host events but are relying on as many people to come and support them and raise awareness for a cause that's affected everybody”.

Carla suggested our team set up an information display in Knighton Library for the week alongside one from the mental health charity Mid Powys Mind. MPM holds Outreach Sessions in Knighton every Friday, 1 – 3pm, at St Edwards Community Room, St Edwards Close, Knighton. Doreen wrote about the group in October last year in Thank goodness it’s Friday in Knighton!

As the theme for this year’s Mental Health Awareness Week is Surviving or Thriving? we decided to ask visitors to the library to tell us what helps them to thrive. People of all ages engaged in a conversation about emotional wellbeing, describing what helped them feel better, and some common themes soon emerged!

Finding paid work was one person's answer to thriving better emotionally. Another woman told us that her dogs made her happy: "They need us and we need them." She went on to describe the great impact Nature has on her wellbeing and recommended reading a book called "Walden" by Henry David Thoreau. Published in 1854 it documents the American's experience of immersing himself in the natural world whilst living simply in a small cabin for 2 years, 2 months and 2 days in Massachusetts. Thoreau observed: “Happiness is like a butterfly, the more you chase it, the more it will evade you, but if you notice the other things around you, it will gently come and sit on your shoulder.”

In fact, books were a common theme in boosting emotional wellbeing in the people we talked to - perhaps not unsurprising considering we had based ourselves at the local library! More in-depth conversations with people revealed an uneasiness with the way that the language of "illness" is used to describe those experiencing distress. One woman said: "Nothing is black and white. There is a spectrum of greyness." We discussed a recent BBC Horizon programme - "Why did I go mad?" in which Jacqui Dillon speaks about the traumatic incidents in her childhood which led her to experience hearing voices. Our library visitor had found the programme fascinating, particularly the Nature-Nuture debate. She said: "Even if 10% of people are predisposed to experience distress - they still need to be in the right, rather the wrong situation, for it to actually happen." 

Other visitors to the library told us how "mind over matter" - the sheer determination to "keep going" - helped them to maintain high spirits. Life could throw all kinds of obstacles at us. There could be challenges to our physical health, or withdrawal of local services due to cuts, but going out into the community and talking to others - getting on with life - really seemed to help.

Gardening cropped up regularly when we asked people what helped them thrive. But Carla had taken one step further, and celebrated World Naked Gardening Day last Sunday 7 May! She had planted rocket, lettuce, climbing beans and watered tomatoes - lucky for her the weather had been gorgeous that day!

Not naked at Knighton Library however! Carla is actually shown wearing one of the T-shirts funded by Knighton & District Community Support Project which were circulated to help raise awareness.

Two live music events have been organised in Knighton to take place this weekend to coincide with Mental Health Awareness Week:

Saturday 13 May
The Barebacks at The Horse & Jockey Inn, 10pm - 12am
Sunday 14 May
Open Mic Night George & Dragon Inn 8pm - 10pm

Thursday, 4 May 2017

Walk and Talk - a dementia initiative

This week’s guest author is Heather Wenban, the Project Development Officer – Dementia Care, at Powys Teaching Health Board. I first heard Heather speak at the Dementia Supportive Communities event in North Powy in 2016, and later found out that she had set up a “Walk and Talk” group in the area for people with dementia, those close to them, and staff members. Following a successful season of walks in 2016, this year’s programme is about to start with the first walk scheduled to take place during Dementia Awareness Week 14 – 20 May 2017. Heather says: “the walk will take place in Newtown leaving the Gravel Car park (the smaller car park) on Tuesday 16th May, at 2pm. This will be followed by tea in the Elephant & Castle. All welcome to join the group.”

Over to Heather to tell us more about how the Walk and Talk group came about:

Whilst I was working as part of the Adult Mental Health team in Shropshire I became involved in the regular Walk & Talk groups they initiated, during the summer months. They were facilitated by a variety of staff members from the clinical psychologists, mental health nurses, occupational therapists, and support workers and normally had 3 staff attending each walk.

Heather Wenban
The benefits were obvious from the outset. Some were excited about where they would be walking that day and the challenge it may bring, others may arrive looking a little depressed and apathetic and wondering why they had come and others came for the meal we would have when we finished!

When I began my role as Dementia Adviser nurse in North Powys, and having seen the benefits of this type of group, I believed that this would be appropriate for our older population and those living with dementia and we could adapt it to meet their needs.

The young onset dementia nurse and I discussed the idea with our carers before running the group to gain a feel for their interest and it was met with very positive comments. The feedback we received whilst it was running was also very positive and they didn’t want it to end as the autumn months were approaching! They felt it gave them the opportunity to talk with others in similar positions and doing it informally, as they were walking, encouraged openness. The carer felt it made the person with dementia calmer and they appeared to feel relaxed and felt no pressure to participate. They would enjoy listening to others talk and always enjoyed walks where water was visible.

As staff we would have background knowledge about the person and this enabled us to talk with them about things that mattered to them. For example, we might talk about their previous work experience or hobbies that they used to enjoy. One of our carers was a local historian and he shared information about the local communities in which we were walking. It would also alert us to any potential crisis situations and we were able to address any issues and reduce the risk of carer breakdown and potential hospital admissions.

It is so important to engage people with dementia in social activities that enrich their lives and stimulate engagement. It benefits mental and physical health and gives people a sense of well-being and improves their quality of life.

Research now supports improved:

Emotional state, reduced stress, agitation, anger, apathy and depression, physical health, skin health, fitness, sleeping and eating patterns, verbal expression, memory and attention, awareness, multi-sensory engagement and joy, wellbeing, independence self esteem and control, social interaction and a sense of belonging. (Greening Dementia 2012).

These are two quotes from the person with dementia and a carer's perspective from the Natural England commissioned report “Is it nice outside? – Consulting people living with Dementia and their carers about engaging with the natural environment” (2016).

“What it is, the fact that if you are out in the open area, it brings a whole new perspective to how you feel, you are not in an enclosed space indoors where you are thinking well, this is my world, that’s their world out there. You go out into their world, as one might say, you enjoy walking, swimming whatever, anything which gives you more exercise to the body, actually exercises the mind as well and fresh air is excellent for people with dementia of any sort because mine should be getting worse all the time but it’s not. It is staying stable and as a result I am still walking, volunteer walk leader and I thoroughly enjoy it, I now walk about 60 miles a month on average.”

“So we just used to walk the streets literally just walk round and round and round until he felt better and… it could be any time of the day or night and that really helped him to be outside… it helped him to calm down again and I don’t know how it worked but it did I guess it just put his mind in a different place.”

The benefits of this group are obvious from both a research perspective and for the mutal benefit of carers and the person living with dementia, in maintaining both their physical and mental health.

Many thanks to Heather for telling us about the Walk and Talk group in North Powys. As soon as we have further dates for the 2017 season they will be added to the Powys Mental Health website events calendar.

Tuesday, 25 April 2017

The BAT Project in North Wales

Staff from the Ablett Unit in Rhyl with voluntary sector agencies including Vale of Clwyd Mind, Unllais,
Therapy Dogs Nationwide and Twix the dog.
I recently found out about a new partnership project in North Wales called BAT - Bringing Agencies Together. It's all about supporting people who have been in contact with mental health services, specifically hospital, and bridging that gap between leaving the ward and returning to the community.

The BAT Project has been running in the two neighbouring counties of Conwy and Denbighshire for just over a year now. It is a massive geographical area to cover, taking in the sandy beaches of the North Wales coast from Llandudno across to Prestatyn, and sweeping south across parts of the Snowdonia National Park, east into the Clwydian Hills and right down to Llangollen. On its southern edge Denbighshire borders Powys, so we can definitely count the locals there as our near neighbours! 

Hannah Luhde-Thompson (4th from left in photo) is the Improvement and Partnerships Development Officer at Unllais, the mental health development, involvement, information and training agency covering North Wales (our sister agency in the North!) She told me more about the initiative:

Service users at the Ablett Unit at Glan Clwyd Hospital in Rhyl are being supported in their recovery and return to the community thanks to an innovative multi-agency group. The Bringing Agencies Together (BAT) project supports patients in identifying activities and groups which can help them in the transition back into their local community and continue to promote their health and wellbeing. We formed the BAT group (patients in the unit chose the name) in early 2016 and it has been a very successful, multi agency partnership. 

The project is a collaboration between the Betsi Cadwaladr University Health Board staff (including Ablett based Occupational Therapists, Clinical Psychologist, and Home Treatment and ward staff), the North Wales mental health development agency Unllais, and Vale of Clwyd Mind, service user and carer representatives, as well as a range of community groups and charities from throughout Conwy and Denbighshire. The occupational therapists from the unit lead the group, but the service user & carer rep on the group played a big part in pulling it all together. 

The BAT group organises community groups to facilitate therapeutic sessions jointly with staff as part of the patient therapeutic programme. These include shared reading delivered by the library service, taster sessions run by the Women’s Centre in Rhyl, massage sessions run by the Red Cross, therapy dog sessions supported by the Therapy Dogs Nationwide and courses run by Llandrillo College to commence in May of this year.

The project group also held two open events in July and November of last year to support patients once discharged back into the community. The project welcomed Conwy and Denbighshire based groups, clubs and organisations to the unit to showcase activities available to service users and their carers out in the community.

More than 24 groups, including Conwy Community Wellbeing Team, Men’s sheds, and Denbighshire Walking For Health, attended the event to provide information on how to sign up to their activities.

The aim was to showcase community activities to service users, as well as their families and carers. It has been really helpful, enabling people to continue pursuits which support their health and wellbeing. The two events were true networking and celebration events and have connected many people in the unit to groups in the community. I frequently hear from third sector colleagues who attended the events that they have since linked with people when they go home! 

Feedback following the open events:

'Everyone was really friendly and approachable.'

'I think all the organisers and volunteers have done an excellent job today.'

'Excellent day, really inclusive and positive. In line with the Social Services & Wellbeing (Wales) Act, partnership working and integration,' - someone from the Community Mental Health Team.

'Wonderful event bringing services together. Promoting wellbeing.'

We were really keen that people were aware of the things available AND they could meet a friendly face from the organisation and understand what to expect if approaching the organisation when they got home.

In Powys Mandy Pearce works as a Reablement Worker with Mid Powys Mind to help support people in transition from hospital back to the community. Mandy also works very closely with the statutory provider of health services, in this case, Powys Teaching Health Board, and other third sector groups.  We would love to hear what you think about initiatives like these in the comments box below.

Tuesday, 4 April 2017

LGBTQ+ - setting up a new Powys group

This week's guest author introduces himself:

My name is Shaun and I am a volunteer at Mid Powys Mind.

I should start by saying that LGBTQ+ (Lesbian, Gay, Bisexual, Transgendered, Questing) is not a mental health condition although it has a huge impact on mental health. Before we decided to have a LGBTQ+ peer support group I read an article that said 70% of people who identify as trans will contemplate suicide, members of the LGBTQ+ community are twice as likely to developed a mental health condition and LGBTQ+ youths are twice as likely to attempt suicide. The reasons for this are isolation, homophobia, biphobia, transphobia and ignorance.

As an openly gay man, who has a diagnosis of borderline personality disorder, this didn't shock me as much as as it should have. What shocked me was how little support there is in Powys; although Powys is the largest county in Wales it doesn't even have a sexual health clinic.

Mid Powys Mind's Wellbeing Coordinator asked me if I wanted to organise and run a LGBTQ+ peer support group and I jumped at the chance. I started by researching and soon found that there were far more sexuality and gender identities than I was aware of. I think it must be so confusing these days for LGBTQ+ youths, coming to terms with their sexuality/gender. We spoke about whether we need to add the Q. Some places will say that Q stands for queer, but I'm now aware that some find this offensive - for a long time queer was used as an insult and although a lot of LGBTQ+ have reclaimed the word queer, if asked I say the Q is for questioning. I have also been taken back how many times I have had to explain what LGBTQ+ stood for, I assumed everyone knew, maybe that is because I am the G in LGBTQ+.

Other things came up that I hadn't thought of since being a teenager. Mainly “coming out” and how we come out as a teenager and think that is it, but the truth is we “come out” through out our lives, friendships, work, socially... there is always that moment when someone says: "Do you have a girlfriend?"

Going around Llandrindod and asking strangers if they would put up a poster to advertise the LGBTQ+ group I was more or less “coming out” in every place I visited. In the back of my mind the same insecurities that plagued me as a teenager came back.... Is this the time I will have to face a negative reaction? And a certain amount of shame. If I feel this way as a confident middle-aged gay man, imagine how a teenager or someone who has low self-confidence may feel?

The group meets on the last Tuesday of each month (5pm - 7pm) in the basement at Mid Powys Mind's Wellbeing Centre in Llandrindod Wells. It is a small, diverse and friendly group. We have guest speakers: so far we have had someone from the Terence Higgins Trust and the Dyfed Powys Police LGBTQ+ Liaison Officer. Future plans for the group include arranging a social evening, a session to raise awareness, trips to the Pride festival and discussions to secure funding.

Anne Woods, one of the PAVO mental health team’s Participation Officers, has been attending the group.

Anne says, “I think it’s very important to be able to get together with people who share similar experiences, especially when we have something in common that can set us apart from others. Although I’ve not experienced much overt prejudice since moving to Powys, I have noticed some and I think it’s vital to have a safe place where we can explore issues around gender and sexuality with people who understand.

As part of the Comic Relief funded project I’m running, we have an opportunity to link up with the Iris Prize community outreach team to produce a short film about issues affecting people from the LGBTQ+ community in Powys and members of the group will be taking part. I would encourage anyone to contact me if they would be interested in taking part.”

For more information about the LGBTQ+ monthly group call Mid Powys Mind on 01597 824411, or email:

You might be interested in these links...

Anne Woods wrote about taking part in the 2016 Pride event in London in Taking Pride in Diversity.

At the start of LGBT History Month in February 2017, Sarah Carr, Associate Professor of Mental Health Research at Middlesex University, wrote "Queer in the head"? Do LGB people in the UK have poorer mental health?

Monday, 27 March 2017

When I grow up

by Suzanne Iuppa, Community Connector  Llanidloes (2nd from left)*

I grow old … I grow old … 
I shall wear the bottoms of my trousers rolled. 
Shall I part my hair behind? Do I dare to eat a peach? 
I shall wear white flannel trousers, and walk upon the beach.

The Love Song of J. Alfred Prufrock, by T.S. Eliot

What do you want your older age to feel like, sound like, look like?

I’ve spent much time thinking about this on my long drives working around the very beautiful countryside of Powys. I’ve worked for Powys Association of Voluntary Organisations (PAVO) now for six months as a Community Connector, linking older people in the county with services to improve their health and wellbeing. 

I moved here from Flintshire in September 2016, where I lived for 25 years and raised all three of my children as a single mother. My boys now live in the four corners of the planet and we joke (well, it is my favourite fantasy) that when I get older I will wing in with my Mary Poppins umbrella, all sprightly and fun, right when my beloved daughters-in-law can’t face another meal prep or load of washing, to look after my many grandchildren in turn, in different countries. My loving offspring will have a very small but beautiful granny flat in each of their houses for me to make magic in during my regular, seasonal visits. When I am not on Nainey duty I will be in my stunning but tiny (ie: low maintenance) cottage with the view at the edge of the Snowdonia National Park. I’ll have dinner parties, write stories, make crafts, feed the birds, and still make the long walks to the pub or garden centre. Or perhaps even take my trusty bike. I’ll thrive. I’ll be happy.

That’s if: if in future I’ll be able to travel easily to see my family, if I develop no long-term health conditions which sap my energy, if my children do indeed have children, and if my daughters-in-law will want my help on a regular basis.

I’m good at being flexible, but, with my family living at a distance and most of my friends being a good ten or fifteen years older than me (I was a young Mum, and my friends and I raised our children together) chances are, if my fantasy does not play out, my older age could be at risk of feeling lonely. In Powys there are plenty of places like my village, small tight-knit rural communities where children are living at a distance from parents and many people are of an aging population, all developing complex health problems as their age advances, in tandem. We might all want to be social! But for one reason or other, it may be hard to do. 

I help many people in Powys whose friends are not able to assist and whose family are not present, by linking them to befriending groups or ‘good neighbour’ schemes. It’s very important these schemes are well supported with funding and volunteers. Because — loneliness is not a condition we want to allow in our communities. The Older People's Commissioner for Wales, Sarah Rochira says: "Loneliness is a major Public Health problem here in Wales. We can all help — one day it could be us."

Loneliness has an effect on mortality that is similar to that of cigarette smoking. It is associated with poor mental health and conditions such as cardiovascular disease, hypertension and dementia.

Loneliness has a much wider Public Health impact too: it is associated with a number of negative health outcomes including mortality, morbidity, depression and suicide, as well as increased health service use.

Most of my work is centered around helping people feel listened to, and responding to people’s individual needs, particularly older people living with a sensory loss, cognitive impairment or dementia, those who are carers or who have mobility issues. It seems in Powys these older people are most socially isolated. In addition, the people I have worked with have reported:

  • Loss of trusted relationships.
  • Loss of privacy and dignity.
  • Being a full-time carer with little social mobility.
  • Poor access to a car or public transport.
  • Not being able to run a home by oneself anymore.
The answer is not the NHS to any of these problems; either primary or secondary care. But… quite often that is where lonely older people end up. If we think of primary healthcare, we can also think of primary health and social services for older people. These should be first in line for funding and support for to prevent hospitalisation. These are: appropriate housing (including residential and nursing care) day centres, personal care, befriending, community transport, practical services such as shopping, cleaning and gardening, and social links.

We need to listen better to older people’s life stories and their wishes to create an enabling environment for all, so we can work together to provide the primary social services. Understanding the sense of loss would be a start. Veronica Jarman, day hospital sister at Llanidloes Day Hospital and a Wales Nurse of the Year, explains: "It’s grief — loss of partner, social position, income, friends… the grief can be overwhelming."

Active and reflective listening are keys skills in grief therapy, and could be an early response to people asking for help with loneliness, before accessing NHS services at a crisis moment.

The Royal College of Speech and Language Therapists, for example, has emphasized the link between the ability to communicate clearly with an individual’s ability to make informed decisions, to access services, enjoy their rights and overall, the dignity and respect that they experience.

Of course the older people in our society have lived through unprecedented change. For all the developments in communications and technology, the needs at the start and end of life are still best met through personal interactions. 

Our society is ageist — the only people really admired and in the driving seat in our society are from age 25 
 60 years. Like puberty, older age is a time of radical transformation for many; complete change. Whereas in previous societies elders had specific roles as guides, healers, mediators, correspondents, even dispute resolution specialists, because their amassed life experience was held in great esteem, now we tend to disrobe older people of roles and responsibility, in our families and in society generally. I’ve no doubt this disengagement has an effect on cognitive function. What would happen if we were able to advertise for older people to fill specialist roles in our community  designers, garden and horticulture, childcare, farming practices with wildlife conservation, flood prevention, town planning, holistic healing, dance events, history projects, clothes manufacture, community transport, language classes? What if people 65 years+ were the only ones to fit the bill, because of their wealth of experience, their time and their care?

Perhaps the Nainey duties and the dinner parties could keep me at the top of my game, for longer. I’m joining some craft guilds just in case — oh and my local town choir! I’ve even started an online course in herbal medicine. Still, I wonder if my daughters-in-law will be able to recommend a really good hairdresser in each country? I hope so!

To contact Suzanne for further information about her work as a Community Connector, please email or ring 01597 828649.

* The photograph also features (L-R) Carla Rosenthal — Community Connector in Knighton, and Melissa Townsend  Volunteer Officer PAVO.