Thursday, 27 July 2017

Looking at Me - an arts and dementia initiative

Artist Terri Sweeney has been running some innovative mosaic workshops at the arts charity Celf o Gwmpas in Llandrindod Wells over the past few weeks (the last session was earlier today). They were specifically aimed at people living with dementia and those close to them.

Last week the PAVO meeting rooms were fully booked so we relocated to the Celf gallery for our team meeting. During a break I had the perfect opportunity to catch up with Anca Pancu, Project Co-ordinator at Celf, to find out more about how the workshops went.

Tell us more about your role at Celf

In this particular project, ‘Reaching Out, Drawing In,’ my role was to schedule dates and select artists to deliver sessions in liaison with the artists, volunteers and participants for each of the series of workshop sessions. I market our programme of workshop activities to relevant audiences and networks, manage the workshop bookings, and collect the relevant materials for evaluation purposes.

Who were the workshops for?

The workshops were for people in the early stages of dementia who were able to attend, communicate and participate in creative workshops. Sessions were free of charge for carers who were welcome to participate in the creative activities and socialise.

The weekly workshops are part of a two-year, European Union funded, Powys-based programme of arts & health activities (2017-2018). The programme aims to benefit over 150 participants and also includes:

  • 3 engagement artists’ residencies – working with people with a range of support needs.
  • Year-round weekly creative workshops for learning disabled adults at Centre Celf.
  • Outreach dementia support programme – creative opportunities for individuals in care settings & at home.
The programme is piloting and evaluating new ways of engaging with some of the most isolated people in Powys.

Tell us more about the workshops

Through our workshops we aim to reduce isolation for our participants, allowing people to develop new social connections and networks. We also bring disabled people into contact with wider society. 

We enable this process through exhibitions and events associated with residencies, improving communication and mutual understanding. We are helping people to develop new skills and to increase confidence which we hope will lead them towards engaging with the wider arts world. This is the reason we observe and act on the unmet needs of participants and we tailor work to support their needs and interests.

‘I wasn’t sure about the self-portrait mosaic workshop,
 if I will be able to do it, but the result surprised me, great fun!’

Why did you choose Terri to run the workshops?

We have chosen Terri Sweeney for the ‘Looking at me’ – mosaic workshops on the basis of her professional level of practice and experience of working with people with dementia. She works in a variety of media including mosaic, felt and mixed media painting and she has many years' experience working as an artist with people of all ages and background.

Why was there a focus on self-portraits in the mosaics?

This is a project that works very well for people with dementia. When they look down to their self-portrait they relate to their own identity as they are using an abstract manner of portraying. This method is challenging their preconceived ideas about who they are, it’s a reflection back in time: ‘this is who I am, this is who I always be’. 

It is a way for them to gain a better understanding of their condition in relation to dementia and to regain a sense of time, place and identity.

How did the participants find the sessions?

The participants were challenged by some of the activities in the beginning but they persevered and succeeded in producing mosaic work that they are happy with. 

They became more confident as the sessions went on, interacting with the artist and the volunteer. New skills were learnt and they interacted with each other and had fun. As the participants gained confidence they became more comfortable within the group.

What are the benefits of the creative arts for people with dementia?

The participants seemed to enjoy the social interaction of the group very much; they are very keen to come back. Through our research, preparation and running of these sessions they have learnt new skills, learning how to develop exercises that combine an appropriate level of intellectual stimulation with sufficient demands on manual dexterity. There was plenty of social interaction and with the right level of support the production of a satisfying result. 

At the end of the sessions they were pleasantly surprised by the standard of the work they have achieved. They have had fun and in the same time they have gained a sense of validation through their creative expression. ‘Looking at Me’ is not only about a memory journey, it's about finding strength inside yourself to do the best you can do, enjoying the moment, and the reflection of yourself in the present moment.

Do you have any other workshops coming up?

Trained artist facilitators are working with small groups, supporting them to use professional arts techniques and materials to keep their minds active and engaged. Examples include poetry and sculpture as well as sculpture, music and dance. The workshops take place year round in blocks of 6 x 2 hour sessions. The 2.5 hour workshops cost £3.50 to attend, and are free for carers. Participants should pre-book where possible.

All the workshops are listed on the Celf o Gwmpas website, but do get in touch if you want further information by ringing 01597 822777.

Many thanks to Anca for telling more about the mosaic workshops - and keep an eye out for more of their exciting programme of events and courses coming up in Llandrindod.

You can also read about Celf's 2016 project running sessional weekends for artists who have experience or knowledge of the arts and mental health.

Thursday, 20 July 2017

Team building with a Treasure Hunt

The end is finally in sight! But yew won't need the buoyancy aid to rescue Clue No 8
Take two PAVO staff teams, 8 clues, an amazing outdoor local venue and a dry June afternoon day – and what do you have? Well, as it turns out, a really fun opportunity to find out more about your colleagues’ work whilst exercising and enjoying Nature at the same time! The perfect team building session!

It all started when our mental health team was asked to devise a “walk and talk” style engagement activity – along the lines of the dementia walks which have been taking place in North Powys for the past couple of years and which we wrote about here. The idea is that people in contact with mental health services, and those close to them, will have the opportunity to participate in a walk with people planning and providing those services (this activity is being planned for Autumn 2017). The dementia walks are very successful, as participants feel relaxed and happy to open up in a more informal environment. In other words, walking does prompt talking!

We decided it would be a good idea to stage a pilot event and troubleshoot any issues which may crop up before launching straight into the main gig. For example… when we did a risk assessment we realised a few fundamental things such as…. that at our chosen location – Llandrindod Lake – it is important to have a few twenty pence pieces in your pocket in case you want to use the facilities!

We had been trying to meet up with the new Community Connectors’ team at PAVO for some weeks, without much success, because how do you manage to find one day that all fourteen of us can make it for an office meeting? Tempt people with fresh strawberries and a treasure hunt though… and it’s surprising how quickly they get back to you with a positive response!

With a venue and a date confirmed, two of us walked the route for inspiration and set to writing our clues and picking hiding places. We also set eight questions for the Connectors which would reveal how much/little they knew about our work. On the day we planned to fill in any gaps and answer questions as we walked from one clue to the next.

Llandrindod Lake provided the perfect spot for the activity as it has well-spaced clue-hiding sites, a ready-made circular route, some mature trees for shade, and the stunning dragon fountain as a backdrop. The landowner, Powys County Council, gave us permission to go ahead once we clarified the details of our activity (and produced a copy of our insurance certificate!) We also informed the local police in case anyone reported “suspicious” activity. We bought some cheap sandwich boxes for clues and questions, and translated a couple into Welsh (with some “Emergency English” for non-Welsh speakers).

On the day Jane, our team manager, set up a base at the Capel Maelog stone circle a short distance from the Lake. After the briefest of briefings (no swimming in the Lake, no climbing the trees) and light refreshments we were ready for the off. We split the Connectors’ team into three groups and staggered their start times on the hunt. One of us went with each team to answer questions and help if the clues proved too testing. But mostly they were pretty straightforward…

Clue no 1: Bear left along the pavement towards the Lake: find a guarded question (sword and axe: both fake).

Community Connectors L:R - Suzanne Iuppa, Carla Rosenthal & Sally Richards

And Question no 1: What are the mental health team’s two core activities? (Answer: Information & Participation - just in case you haven't  worked it out already).

Over about the period of an hour and a half the teams then hunted high and low for their next clues and questions, and between clue locations staff chatted about their work, their feelings about their work, and the issues that were coming up regularly that they needed help with. Staff in the Community Connectors’ teams were also given the chance to ask their mental health colleagues one main question at each clue location. The three Connectors in my group paused at the jetty on the Lake (where they didn’t get “stumped or stung”) to ask “what is the biggest barrier to accessing mental health services?” This was where the thorny issue of waiting lists first came into the conversation…

Ella's favourite birdwatching seat sent us here...

Personally I found the activity the perfect way to get to know new colleagues in an informal and friendly yet also focussed way (if our conversations started to stray from the main agenda then the next clue just round the corner soon got us back on track). I had not previously met Sally Richards, the Connector from Ystradgynlais, so I was very pleased to have the chance to get to know her and also learn what was happening (or not) in Ystrad. And another bonus: we all laughed a lot on our way round – and not just because the previous team had sneakily hidden all the sandwich boxes in much less obvious places!

When we all regrouped at the end to talk through the activity, pretty much everyone had found it a positive experience. Several wondered what we would have done if it had poured down… so we need to take that on board when planning future outdoor activities.

Chwiliwch am greadur barfog ddwfn yn ei lyfr / Look for a bearded creature reading a book

When it came to conversation topics it turned out that one of the most popular questions was around counselling. There are currently many cases of counselling waiting lists across the county as we have previously discussed on this blog. However, the Connectors were pleased to discover that we have a Counselling Links page on our website with information about options other than NHS counselling in Powys. And one of the key things all the Connectors really wanted to find more about was: What are the participation opportunities in our team? At this point Anne and Philip were able to tell them all about their respective projects – Stand up! for emotional health & wellbeing, and supporting the individual representatives to feed back to various boards.

So… no blisters. No one stole our PAVO sandwich boxes. No one lost or missing. Just lots of smiley faces! Real faces! Bring on the next staff treasure hunt!

If you have any questions for us and can’t wait for the next treasure hunt activity, just pop them in the comments box below.

Tuesday, 11 July 2017

Pegasus – changing the way we talk to Dyfed-Powys Police

PCSO Aileen Stewart - 2nd from right, with colleagues from Dyfed Powys Police, PAVO and Mid & West Wales Fire Service

In May I met Police Community Support Officer Aileen Stewart at the Dementia Information Day in Newtown during Dementia Awareness Week. Aileen gave me an update about the Pegasus communication scheme used by police officers in the Dyfed Powys force area, and it seemed like a blog post would provide the ideal opportunity to share the information with a wider audience to further promote the scheme’s use.

First tell us a little about yourself and your role in Dyfed Powys Police

I am PCSO Aileen Stewart and I work within the Neighbourhood Policing team in Newtown. I have worked as a PCSO for five years.

As a PCSO we have various duties including high visibility patrols, public reassurance, safeguarding our community, gathering intelligence and dealing with anti-social behaviour. We also work closely with local agencies, for example housing, mental health services and voluntary services to deal with issues and solve problems, for example neighbourhood disputes.

What is the Pegasus scheme?

The Pegasus scheme is a service for people who live and/or work in the Dyfed Powys Police area aimed at those whose disability or illness makes it difficult for them to communicate when calling or speaking face to face to the Police.

It’s designed to make it easier to contact Dyfed Powys Police quickly and easily on both the 101 and 999 numbers.

How does Pegasus work?

Registering for the scheme is free. Once a person is registered and their selected password is approved the individual becomes a member of the scheme. The information will be stored securely.

Pegasus is really simple. The caller will only have to say ‘Pegasus’ and give their password to be identified by the call handlers.

The call handlers will then have access to details of the person calling – full name, home address, contact details for family member/support worker, and how best to communicate with the caller – this information will also be available to the incident handlers who can advise the officers on route to the call of the nature of the caller’s disabilities and how best to communicate with the caller.

Pegasus users will also be provided with a Pegasus key fob to carry. If they speak to Police Officers or PCSOs and find it difficult to communicate they can show this card, provide the officer with their password and they will be informed via radio of the person's details.

How would Pegasus work for people experiencing a mental health crisis?

The person calling would only have to concentrate on telling us what is happening once they have used their password and confirmed their details.

The call handler will have all the caller's personal information and be able to communicate with the caller in the way which they have said will help them or contact the family member/support worker that has been provided.

The attending officers will then be fully aware of the caller's need when dealing with them making it a more positive experience and aid in getting them the help they need as quickly as possible.

Where did the idea for the Pegasus scheme come from and when was it launched?

Pegasus was officially launched on 2nd April 2012 in Dyfed-Powys.

The idea originated in Nottinghamshire Police in 2008/9, from a member of the public who had suffered a stroke, and was also a victim of anti-social behaviour. When he called the police to report the anti-social behaviour he was told to phone back when he was sober. He then contacted the Chief Constable in Nottinghamshire and put forward an idea of having a PIN number which he could provide and they would have his details already.

After Nottinghamshire Police, City of London Police also adopted the scheme, and then ourselves, therefore we were the first force in Wales to adopt this kind of scheme.

How many people have signed up to Pegasus since then, and what kind of feedback do you get?

We currently have 440 members.

Some people that have signed up to the scheme have previously had a negative experience due to the officers dealing with them not having enough information about them before. They feel reassured about us having information about them that can make their experience with the Police a good one and also that we can deal with their needs should they need to contact us.

What is your personal experience of working with the Pegasus scheme out on the beat? 

There is a person that I speak to regularly that I signed up to the scheme. Due to knowing their needs I have been able to see when their mental health has begun to decline and get in touch with their mental health worker to begin the ball rolling for the person to have a psychiatric assessment.

And finally, why was the scheme named after a creature from Greek mythology?

The victim of the anti-social behaviour that prompted the creation of the scheme stated that in the worst times of the anti-social behaviour he used to imagine being whisked away by the Greek mythological flying horse “Pegasus” – hence the name.

Many thanks to Aileen for telling us all about the Pegasus communication scheme used by Dyfed Powys . What do you think of the scheme? We would love to hear from you - comment below or send us an email.

Tuesday, 4 July 2017

CRAZYWISE - the Brecon screening

“Crazy…or wise? The traditional wisdom of indigenous cultures often contradicts modern views about a mental health crisis. Is it a ‘calling’ to grow or just a ‘broken brain’? The documentary CRAZYWISE explores what can be learned from people around the world who have turned their psychological crisis into a positive transformative experience.”

On the longest (and probably hottest) day of 2017 I was at The Wellington Hotel in Brecon with PAVO colleagues, community groups, staff from mental health services and individuals to watch this new documentary film by directors Phil Borges and Kevin Tomlinson. The free community screening had been arranged by Avril Meyler of Emerging Paradigms in partnership with PAVO and Brecon community organisations. My colleagues Anne Woods, Philip Moisson and Jane Cooke helped organise the event and also facilitated the open discussion sessions following the screening.

Regular readers of this blog will know that we are keen to promote alternative approaches to looking at mental health distress, asking what has happened to a person who is in mental health crisis rather than concluding that something is wrong with them. So we were delighted to be asked to be involved in the first screening of this groundbreaking, powerful and as it turned out, very moving film, in Powys.

Avril explained in her introduction that she first saw CRAZYWISE at an #EmergingProud event 
in London during Mental Health Awareness Week in May and knew immediately that she wanted to bring it to her local community. (She has written about the Brecon screening on her blog: A Multidimensional Paradigm).  Avril anticipated that the documentary would prompt much interesting discussion, and suggested some of the questions we might ask at our tables once we'd watched the film, such as: “What can we learn from people who have successfully navigated a psychological crisis?” and “Is it time to pay more attention to the psycho/social and spiritual underpinnings of mental health and bring a more balanced approach to mental health care?”

Phil Moisson, Anne Woods, Avril Meyler, Jane Cooke, Andy Hall, Paul Stephens
And so to the film. “CRAZYWISE follows two young Americans diagnosed with “mental illness.” Adam, 27, suffers devastating side effects from medications before embracing meditation in hopes of recovery. Ekhaya, 32, survives childhood molestation and several suicide attempts before spiritual training to become a traditional South African healer gives her suffering meaning and brings a deeper purpose to her life.” 

Interspersed with Adam and Ekhaya’s stories are interviews with mental health professionals and indigenous peoples, and the director Phil Borges discovers: “a growing movement of professionals and psychiatric survivors who demand alternative treatments that focus on recovery, nurturing social connections, and finding meaning.” 

In the early scenes of CRAZYWISE, human-rights photographer and filmmaker Phil tells us what inspired him to start filming. After many years documenting indigenous cultures, he realised that their interpretation of “psychotic” symptoms as a journey of spiritual transformation is completely different to the way that psychosis is regarded in the West and a deep curiosity drew him to find out more. In an interview with Frontier Therapy magazine Phil describes changing his mind about “mental illness” – which he used to think was caused by a “chemical inbalance in the brain. “I now look at it as a natural transformational process waiting to happen. Unfortunately our culture does not look at it this way and so there is little support in helping the individual find meaning and purpose in their suffering."

Round table discussions

The film prompted some really thought-provoking discussion throughout the remainder of the day. Without divulging personal stories, I picked up on several key themes: 

The not so good…
  • Questions about what has happened to you are never asked.
  • In Powys the first port of call for someone in mental health distress is the GP – so people are set on to the medical route right at the start.
  • If a GP was amenable to other options what would they offer? What is the alternative in Powys?
  • It is horrendous trying to fight for help if labelled as an “alcoholic” or “nicotine-dependent.”
  • People are labelled as having a problem when often the problem is external, such as work-related stress.
  • If you have a problem outside Mon-Fri 9 – 5 you are stuck mental health-wise.
  • Some people feared that if they referred to a spiritual experience that this would just add to their medical diagnosis.
  • Patients with a physical illness are trusted to understand and monitor their medication. This happens far less with mental “illness”. 
  • Being challenging is not an illness.
  • Doctors will always be in control as they prescribe the medication.
Jane Cooke, Senior Officer Mental Health at PAVO and Tania Dolley, Psychologist at Powys Teaching Health Board

The opportunities for different approaches…
  • “When I am in emotional crisis I want a community that welcomes the symptoms and says it will be alright. That is so healing.”
  • “This could be a half-way house that accepts me for who I am. I don’t mind if the people there are peers or professionals, so long as they are the right people. This would save money as it would prevent long-term issues from developing and also possibly hospitalisation.”
  • There should be a support system for people using services to empower them to question treatments and medication.
  • In the film the professionals who supported The Diagnostic and Statistical Manual (DSM) are now against it. Some people in the system are more open-minded.
  • "It would be nice to present a “basket of fruit” to the world – what works for one person is different for another. Someone might want a peach one day and a nectarine the next."

Andy Hall edits One in Four three times a year, available from Brecon & District Mind

And other questions and comments…
  • Several people were keen to find out more about shamanism. (In some cultures a psychotic experience is viewed as a calling to become a healer or shaman). Others pointed out that a spiritual way is different for everybody – it could be a drumming session…. it could be being a mother….
  • Medication works for some people and sometimes it can be helpful. In the film this was also stated.
  • There are no psychiatrists or community psychiatric nurses in the room today. Where are they? We want them to hear our story.
  • Are the professionals the community leaders of our time in terms of spiritual growth and connection? Or can it just be about grassroots social connections?
The hope now is that we can acquire the licence to show CRAZYWISE to many more audiences throughout Powys, so that further discussion can be stimulated and ideas gathered about changing the response to mental distress in the county.
What do you think? Would you be interested to see the film? If so, get in touch, or leave a comment below. You may also like to find out more about Open Dialogue, the Spiritual Crisis Network, and the Hearing Voices Network.

Whilst the film was running I was transfixed. It’s compelling stuff. I lifted my pen only once to write down a quote from mental health advocate and counsellor Will Hall who said: “The Diagnostic and Statistical Manual is basically a sophisticated way of not listening to people...” 

But as the film reinforced over and over again – people just want to be listened to no matter what they're going through.

Tuesday, 27 June 2017

In memory of Kelvin Mills: trustee, volunteer and life affirmer

Powys Patients' Council team 2014: L - R Freda Lacey, Rhydian Parry, Penny Price (Ward Manager), John Lilley, Kelvin Mills
by guest author, Freda Lacey
PAVO Senior Officer, Health & Social Care

I wrote recently about “Dying Matters” and in May, one of the long standing volunteers of the PAVO Mental Health team, Powys Mental Health Alliance (PMHA) and Mid Powys Mind - Kelvin Mills - died.

When I facilitated Powys Patients’ Council several years ago now, which goes into Bronllys Hospital Mental Health Inpatient Unit, I was privileged to work with three volunteers. Kelvin was one of the liveliest volunteers who dedicated his time to speaking with patients and rallying them around to come in and visit us to talk about how they were doing and/or speaking up about any issues, compliments, concerns they had whilst being an inpatient on the mental health ward.

It is no secret that Kelvin used to be a patient, both at Bronllys for some time but also at “Mid Wales Hospital”. He was known, far and wide, by staff and other people in contact with services, volunteers and members of the public. Everyone seemed to know Kelvin. I don’t think he ever met a stranger. If he didn’t know you, he’d know all about you within minutes, and you’d know about him! He would have treated you to a story or two, shared some history, told a joke (quite often “politically incorrect”) and laugh hilariously so you had no choice but to laugh with him. He was incredibly generous and very funny, sometimes without meaning to be.

Kelvin at a PMHA trustee meeting in 2010 with fellow trustee Jill Dibling
I remember fondly some of the PMHA Trustee meetings, when trying to have a serious conversation about some order of business, Kelvin would break out the crisps from his rucksack (which he was never without) and start to share them out, not caring a whit about whether it was the right time for a break. Kelvin could get quite passionate about rights and would tell you straight if he thought something wasn’t right. He wasn’t shy about saying what needed to happen - he expected people to step up to the plate and do what was necessary.

Kelvin's Poems & Jokes page in the PMHA newsletter

He was a nostalgic and used to quite often tell stories of his time in Mid Wales Hospital and the fun and community they had. He spoke about his catering experience and I know from attending his funeral, and hearing some more about his life, that he was a very good cook. I believe he used to volunteer/cook with Mid Powys Mind on occasion.

Before going into Bronllys Hospital for our meetings with patients, we’d always have lunch, the volunteers and I, and have a bit of a briefing about issues we’d picked up from the last meeting and actions that had taken place. Kelvin was known to the staff at “The Honey CafĂ©” where he would chat away to them as if they were his friends. He would order the same thing always, a cheese sandwich, a cup of coffee and an apple or berry tart with vanilla ice cream, all to come at the same time. He is the only person I knew who could stand whilst having a cup of coffee in one hand, a cigarette in another and fall asleep - an incredible feat of balance.

Despite Kelvin’s physical ailments, he would always be ready to come to Patients’ Council and looked forward to his outings. He was always telling me about ways of saving the public purse and would speak quite often about the amount of money being spent on services and whether it was really value for money. He made me reflect on how things were and are now.

I think Kelvin always sought for ways to belong, to local community. He was incredibly attached to Llandrindod Wells Football Club and used to go to games with his Dad. He was dedicated to helping the club in many ways. He was also a bit of a rock and roller, liked wearing leather jackets, jeans and loved Elvis Presley and was seriously attached to watching Westerns.

Gravel Baptist Chapel
People I’ve spoken to remember Kelvin very fondly. One of the Senior Managers at Bronllys mentioned a Christmas on the ward she’d never forget, especially given what Kelvin had bought for all the nurses!

We will miss Kelvin. We will miss his laughter, his humour, his stories and his abilities to break down the barriers of what is expected and the unusual. He took risks without knowing he showed us how to push the boundaries. He didn’t do what was usual and yet he was so very familiar. He wasn’t silent and sometimes his stories meant you got lost or side tracked. I learned to be patient with him as he sometimes wouldn’t take no for an answer. He demanded respect and well, he deserved it. His life, whilst too short, packed a punch, I’ll never forget him.

There is a saying at the end of the novel, “Middlemarch” which I feel appropriate to end with (and have taken some liberties of changing some words).... "His full nature spent itself in deeds which left no great name on the Earth, but the effect of his being on those around him was uncapturable. For the growing good of the World is partly dependant on unhistoric acts, and on all those people who live faithfully their hidden lives and rest in unvisited tombs.”

Kelvin lies at rest in Gravel Baptist Church’s graveyard, overlooking the peaceful countryside near Llangunllo. I’d like to think he won’t rest in an unvisited tomb…

RIP Kelvin Mills: died 6 May 2017, aged 59 years.

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.