Dying Matters - Being in a Good Place to Die

Dying Matters week this year is the week beginning the 10th May. The focus of the week this year is ‘being in a good place to die,’ Many of us focus on the quality of our lives but how we die and end our lives is equally important. Sarah Wheeler tells us more about the steps we’re taking in Powys to ensure that people living in our communities are in a good place to die.    

Sarah Wheeler - Macmillan Lead Nurse End of Life Care Planning

What brought you to work in the field of palliative care?

I have been a nurse for 34 years and enjoyed my career latterly in Birmingham working as a Colorectal Specialist Nurse in a hospital and community setting. Within this role I was often privileged to support patients and families at the end of their lives, developing a passion for end of life care. In 2005, my family and I decided to move to beautiful Powys and I joined PTHB team as a Macmillan Palliative Care Clinical Nurse Specialist and have enjoyed being part of a supportive rural community in Powys.

Tell us more about your role as Macmillan Lead Nurse for End of Life Care Planning with the PTHB?

My role is to work within national and local end of life guidance, to ensure best care and support in end of life care for all adults along with partners within Health, Social Care and Voluntary sector organisations. I also enable and empower health and social care staff to deliver best practice in end of life care, educating and training staff improve co-ordination of end of life care.

An important part of my role is to ensure that every adult in Powys has the opportunity to talk and share their future care wishes voluntarily with family, friends, and health & social care professionals.  We know it is important to help you and those people close to you to understand what you feel is important for your future care. This is known as Advance Care Planning (ACP) and ensures that your voice and opinions continue to be heard, even if you are unable to speak for yourself. ACP can help you live your life to the full with peace of mind that your future care wishes have been talked about and shared.

ACP Lauch 2019

Tell us more about Advance Care Planning and how it started ?

In 2019, as part of the Powys Specialist Palliative Care Team we launched the PTHB "My Life, My Wishes" Advance Care Plan documentation following extensive key stakeholder and public engagement.

“ACP is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future care”.

In Powys, this ensures honest conversations, informed choices, with the aim of involving family and carers to allow for seamless care provision at end of life or if you were unable to speak for yourself: What is ACP?

Are there particular issues which arise with end of life care in rural areas like Powys?

ACP in rural communities such as Powys face additional challenges, as our local residences are often far from hospitals and loved ones, making planning ahead especially important to ensure quality palliative and end of life care or clear decision making within a crisis conversation. Although these are often seen as difficult conversations, evidence suggests that ACP is more accessible and less threatening in rural areas when these conversations are held with local people who are a trusted and part of the community in Powys. Evidence also suggests that when loves ones are able to make wishes and preferences happen it can be very comforting and helps in loss and grief.

Bevan Commission exemplar

Do you work closely with any  other organisations or statutory services to provide support to people?

With these challenges in mind, I have now become a Bevan Commission Exemplar following completion of a project educating key partners in PTHB, Powys County Council and Powys Association of Voluntary Organisations (PAVO); whose members are now Powys ACP Champions, and have the knowledge, skills and confidence to support and advise on informal and formal ACP within their community of Powys. ACP opportunities arise through their roles, their established local community networks and their personal networks.

Through collaboration with health, social care and local voluntary organisations ACP champions empower and enable ACP in their communities in rural Powys, encouraging open conversation and using the PTHB My Life, My Wishes ACP document and Information guidance. www.pthb.nhs.wales/about-us/programmes/my-life-my-wishes

What are the benefits of My Life My Wishes?

To date we have educated 220 ACP Champions in a variety of health and social care and voluntary settings, and My Life, My Wishes ACP document continues to support open conversations, to write and share wishes in advance. We continue to support Powys health and social care professionals to respect future preferences, values and wishes that matter to the person in the community we care for.

What are your hopes for the future of palliative care in Powys?

Through my role, my hope is to continue to nurture and grow an ACP movement in Powys with a rolling programme of public awareness of ACP, utilising the support of the local Powys ACP champions and acknowledging them as a huge community asset. Awareness campaigns such as CompassionateCymru/Dying Matters Awareness week, Death Cafés and Departure Lounge will support breaking the taboo of talking about death and dying within local communities in Powys. When the Covid-19 crisis hit us in 2020 it changed the whole landscape of the death and dying conversation and brought serious illness conversations and ACP to the forefront of our community’s thoughts. 

What does being in a good place to die look like in Powys?

Dying Matters Awareness week 10^th – 16^th May 2021 focuses on the importance of being in a good place to die – we want people of all ages to be in good place physically, emotionally and with the right support in place – getting there means having important conversations, taking careful decisions, thinking, talking and planning for it.

Let’s grasp the opportunity to promote and support future care planning with community networks that make a difference at the heart of the community in Powys!

In a good place to die.

If you could change one thing about the way we approach death and dying what would it be?

If I could change one thing about the way we approach death and dying is that it would be normal for us all to have a future care and death plan in place, just as it is now the normal to have a birth plan in place.

ACP remains more effective when introduced to our whole community in Powys, even before a person becomes unwell, or unable to speak for themselves or if experiences an acute crisis. “I didn’t want that..”

I hope through open conversations about death & dying we can to unleash the concept of compassion, care and support within the local rural community for those with the greatest needs.

If you had one top tip, or piece of advice about being in a good place to die what would it be?

My tip is Advance/future Care Planning is for everyone and “it is never too late to talk about your future care wishes.”

www.pthb.nhs.wales/about-us/programmes/my-life-my-wishes

“it is never too late to talk about your future care wishes.”

Our thanks to Sarah for taking the time to let us know about the steps in place to support death and dying in Powys. If you'd like to find out more please contact Sarah Wheeler at the health board Sarah.J.Wheeler@wales.nhs.uk

To read more about bereavement support in Powys please see our PAVO Mental Health Blog Bereavement Support in Powys

 

 

 

 

 

 

 

It’s Time to Talk About Dying

what to do when someone dies? 

Last year we celebrated the ground-breaking  “My Life My Wishes,” a PTHB Palliative care initiative, focusing on those often difficult questions around death and dying, with the launch of the Powys Advanced Care Planning document. What has become clear as a result of this initiative is that there is a need for a dedicated approach to end of life and bereavement care. What is important to establish from the beginning is how support is co-ordinated and delivered. What do we do in Powys when someone dies?

SATH Swan Scheme

At the moment there isn’t a dedicated bereavement strategy in Powys, it’s a blank canvas with the opportunity to shape services and provision for our local Powys communities. To find out what bereavement services are offered in neighbouring Shropshire we visited the SwanScheme at Royal Shrewsbury Hospital.

.SWAN is an acronym for Signs Words Actions and Deeds.

SATH were early implementers of the SwanScheme, devised by Roy Lily and pioneered by Fiona Murphy in Manchester hospitals. The premise of the Swan Scheme is that “we have one chance to get end of life care right,” so we need to do it well.  In Shrewsbury there’s a dedicated bereavement suite based in the old mortuary viewing suite , opened in 2015, and two end of life care two bereavement rooms, with a special children’s room. It feels like you’re visiting someone’s living room with a welcoming, calm atmosphere. There are pictures on the walls, comfortable chairs with lots of thoughtful and sensitive considerations and attention to detail, such as mood lighting and CD players.

The end of life volunteer service began in 2017, with 23 current volunteers and plans to expand with a SWAN room on each ward. Every individual or family with an end of life care plan through the SWAN scheme receives a memory box containing several helpful items for the bereaved such as tissues, a small ribbon-tie soft bag for jewellery or a lock of hair and a swan bag for the bereaved’s possessions. What is particularly beneficial about these bags and boxes is that everyone at the hospital recognises the significance of the SWAN and takes this in to consideration.

The Rules

thinking outside of the box

An underlying premise of the SWAN scheme is that the rules are there are no rules. Rules can be broken and out-of-the-box thinking is encouraged and welcomed, for example flowers, a favourite food or drink and pets are all allowed, with special pet passports to allow access to the hospital, it’s the little things that can make an end of life experience more personal and less clinical, bringing moments of joy to the final moments of someone’s life.Time is also irrelevant when it comes to SWAN end of life care. It’s possible to share a final Christmas in June or a Mother’s Day in December. What is important is that the death is as personal as possible and as long as it’s safe and kind with no harm to anyone it’s OK. This approach encourages open and honest dialogues around death and dying. Demystifying the stigmas and taboos we cloak death in and making it more acceptable and approachable, making any fears and concerns easier to talk about.

Important Points

Conversations about death and dying are encouraged to be seen as ‘important,’ rather than ‘difficult,’ It’s one of the most significant conversations we’ll have about our life and how we choose to leave it so it’s important to be honest and open. It’s important to take in to consideration, where we want to die, who we want to be there, who is going to represent you if you’re unable to represent yourself. Kathryn Mannix talks about these important conversations in  her short but poignant You Tube Video, “ Dying is not as bad as youthink,” 

Powys Bereavement Launch

The visit to the SWAN scheme at SATH was particularly thought provoking and inspiring with lots to consider moving forward with a Powys Bereavement strategy. Planned to coincide with “Grief Awareness Week,” the Powys Bereavement Project was launched at the Metropole Hotel, Llandrindod on Tuesday 3^rd December The event was well attended with a mixture of statutory and third sector organisations. The launch opened with a video of Julia Samuels MBE of the “Good Grief Trust,” with the message that, “everything about grief and loss is chaotic and messy,” promoting the fact that there are no set rules and we really need to talk about grief, death and dying and bereavement.

Speakers

Several people shared their perspectives about grief and bereavement with the room. Becky Evans from Credu was the first person to address the room. Becky Shared a powerful Vlog with us from Powys young carer Emily Bleakley who cared for her mother during her illness and death from terminal bladder cancer last year. Emily’s story is shared in our PAVOMental Health Blog Becky’s key message to the group was that it’s important to help people with all types of grief and support people with caring during end of life, through to bereavement and beyond.

Sue Westley, chair of CRUSE Bereavement Care spoke next. CRUSE is a national organisation found throughout the UK and Northern Ireland. It’s reliant on volunteers and in Powys has an area co-ordinator based in Newtown. Sue informed us that approximately 600,000 people per year are bereaved. Most people have good social support networks. CRUSE is there for those people who don’t that don’t have that support . CRUSE offer one to one appointments at home or in a safe place, giving support and offering advice to help people in their grieving. They offer different types of support including pre-bereavement, major incident and dementia and also run workshops to support people who are bereaved. Sue highlighted the importance and value of talking, not internalising feelings. With 60 years of supporting people through grief and bereavement CRUSE have now delivered a powerful Manifesto for Bereaved People. They are also planning to recruit more volunteers this summer, if this is something you'd be interested in please contact them at powyscruse@cruse.org.uk

Marion Baker talked to us about the services provided by the BrackenTrust. Based in Llandrindod they offer support to people affected by cancer, their friends and family and carers, providing a range of activities and group support from gardening to singing to mindfulness and massage. They are currently in the process of standardising their bereavement service.

The Samaritans were represented by Alison Davies who described the services offered. All roles at the Samaritans are filled by volunteers, there are currently 80 members of staff in Powys, 40 shop workers and 40 listening volunteers. Their aim is for fewer people to take their own lives. They currently offer support by phone, e-mail and sms. There are always two volunteers and a leader on duty, employing SHUSH listening tips to provide a safe place where people can talk openly about their feelings and experiences.

The morning session ended with an open and honest, heartfelt message from Alison Edwards-Lewis, Palliative Care Secretary with the PTHB, which highlighted the need for a Powys Bereavement scheme to be established. Julie Rowles, Director of Workforce, Organisation Development & Support Services for PTHB thanked everyone and spoke movingly of her own personal experience of grief and loss.The Tenovus Voice Choir joined us for the final moments of the launch. Tenovus is a choir for people affected by cancer. It was set up 75 years ago and has gone from strength to strength in that time. There are 18 choirs in Wales and 2 in London with 1800 weekly singers. Tenovus provides support 365 days of the year and base their support on the fact that singing makes you feel better. Something we were able to experience first-hand as the Llanidloes Tenovus Choir joined us to sing Christmas carols.

Next Steps For Powys

The launch was a powerful first step towards implementing a Powys Bereavement Plan. There was music, cake, laughter and tears and a real sense of a united passion and commitment to supporting people in end of life care and bereavement. The palliative team are in the process of working on a project plan with these initial steps and intentions:

• We want to ensure that everyone who is bereaved in Powys has accessible, individualised and holistic support.
• We recognised the huge breadth of experience in terms of types of loss and grief reactions and that individuals may need very different things, at different times, across a large geographical area.
• We celebrated what support is already there which surprised many in the room, and agreed it needs a central directory for accessibility (with a search engine function, probably through infoengine)
• We explored how grief is totally natural process that does not need medicalising – but it needs to be normalised and supported within community contexts
• We recognised the support needed for professionals working with people who are grieving, and that education and easily accessible information is needed for everybody.
• We recognised that particular kinds of deaths and losses need particular support, for example, death by suicide, miscarriage, death of a child.
• We are committed to work together to radically improve bereavement services in Powys in the next year.

The words of Tiffany, choir leader with Tenovus, Llanidloes stay with me as we move forward with the bereavement project, “Grief is a build up of love with nowhere to go,” Hopefully by coming together and working out what good grief looks like in Powys, we’ll find healthy avenues and channels for the grief.

Powys Dementia Network - Newtown July '19

Powys Dementia Network event - Newtown 2019
By Jen Hawkins & Jackie Newey - Health & Wellbeing / Mental Health Information Officers

On Wednesday 17 July we attended the latest Powys Dementia Network event at the Football Club in Newtown. It was organised by our colleague Sue Newham, Engagement Officer in the team, and attended by a huge variety of organisations and individuals. These included Dementia Matters in Powys, Alzheimer’s Society Cymru, Powys Libraries, Hafren School children, Powys Teaching Health Board and people living with dementia to name but a few.

As always we will try to capture some of the spirit and information from the day below, but if you would like to find out more and / or attend future events then please get in touch - further details at the end of the post.

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

Alzheimers 40th Annivesary

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

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

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

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

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

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

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

The hampers were followed by the RemPods - amazing pop-up banners featuring large scale photographs of relevant scenes. On the day we enjoyed taking selfies in front of the Seaside RemPod - the only thing missing were the actual ice creams! Other RemPods

feature a shop and a 60s/70s living room and they work really well engaging people in initial conversation. Andrew said “it’s such fun watching how people open up and chat.”

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

Another top tip passed on by Andrew and Agnes from the Powys Library service is the carers library card. Anyone who cares for someone with dementia in a personal or professional capacity, family members and friends of people living with dementia are all eligible for a carers card. This allows you to take out up to 20 books at a time with library fines or fees incurred.

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

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

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

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

Hafren School Intergenerational Project - Children from Hafren School

Children from Hafren Junior school came along to share their intergenerational singing project with us. Three hundred staff and pupils at the school are trained as dementia friends, with two members of staff qualified dementia champions. Pupils from the school are actively involved with Newtown’s dementia community and can be regularly found at Newtown Library on Friday afternoons and Plas Cae Crwn on Tuesday afternoons. Carl Hyde, headteacher of the school, extended an open invitation to attend one of their sessions claiming that the “two most memorable afternoons of his 21 year teaching career,” were as a result of attending the intergenerational afternoons. Take a look at our video of Hafren Junior School Pupils or pop down to one of the afternoons to experience the project first hand.

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

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

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

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

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

https://www.youtube.com/watch?v=sBtolG4R_UU&feature=youtu.be - English

https://www.youtube.com/watch?v=YCIieY0m9VQ&feature=youtu.be - Cymraeg

My Life, My Wishes - Heather Wenban, Dementia Lead, Powys

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

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

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

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

●     Education and Training

●     Employment

●     Health appointments.

●     Shopping.

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

Dial-A-Ride

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

Community Car Schemes

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

Taxi Card Schemes

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

Group Hire

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

Powys Community Transport can support groups and communities in many ways, in the year 2018-2019 community transport has assisted people with the following trips:

●     5,778 Powys Community Hospital.

●     20,000 Education & Work

●     1,292 District General Hospitals Wales

●     2,229 District General Hospitals England

●     9,048 Primary Care

●     30,000 Social & Pleasure

●     10,000 Day centres

●     79,136 passenger journeys made in total.

In this time period there were 5,256 recorded users of community transport, with 78% of Powys in employment and only 228 volunteer drivers,  the need to recruit drivers as volunteers for community transport is important.

Our next Dementia Network day is provisionally planned for Wednesday 17th January in Llandrindod. Sign up to the Powys Dementia Network and find out about future Awareness Days then please contact Sue Newham, Engagement Officer at PAVO, by emailing sue.newham@pavo.org.uk or ringing 01597 822191

My Life My Wishes - Live Well Dying Matters.

"How people die remains in the memory of those who live on…"

 Dame Cicely Saunders (1918-2005)

We're all familiar with the Powys Ways to Wellbeing with,"Start Well, Live Well and Age Well," Just as important to consider is how we end our lives, it's time to look at "Dying Well."

Live well Dying Matters

Death and dying can be taboo topics in our culture, that's why weeks like "Byw Nawr- Dying Matters," are important to raise awareness and break down those awkward barriers. How we approach the end our lives is just as important as how we choose to live our lives. It's just as relevant in death to still have your say, yet often we do not have those all important conversations.

• 76% of people living with cancer had thought about the fact they may die from cancer.
• Only 35% of people who had thoughts and feelings about their death had shared these feelings with anyone.
• Only 8% had spoken to their health care team about the subject. Macmillan (2017)

Background to Advance Care Planning

In June 2018 the PTHB identified the need to have an advance care planning document to enable conversations around death and dying. Extensive planning and research was carried out in creating a working document, enabling people to open up to conversations about end of life planning. In January 2019 the draft Advance Care Planning Document was rolled out to be extensively tested with important feedback leading to a co-produced and designed final version. 

The next step was to train special Advance Care Planning Champions as ambassadors to spread the word and make the document widely available. The first group to be trained were link nurses, soon followed by Nursing & Residential Care Homes, Voluntary Organisations, Welfare Rights and many more nurses. By "Live Now Dying Matters," week 13th- 20th May 2019, fifty ACP champions had been trained and were presented with their ACP certificates and badges at the launch day on the 13^th May 2019.

ACP Champions receiving their mugs and badges.

Making a Difference 
Dying is a sensitive topic that can be difficult to come to terms with. An ACP won’t stop the emotional pain but it can help to make it a little easier. Kim Bailey attended the launch of the ACP on the 13^th June and shared her story and experience of having an ACP and how this has been of benefit for her and her family

A Patient’s Perspective on the My Life, My Wishes Document in Powys

“I found the “My Life, My Wishes” document very helpful especially the “My Last Days” section where I can tell my family and friends how I want to be cared for and where, without upsetting anybody. Before this document I had a piece of scrap paper in my mum’s cupboard with my funeral wises written on – now they are in my document where all my family can access them. This document is so helpful to bring up a subject that no-one really wants to talk about, once given a cancer diagnosis. I wish this had been around 7 years ago when my dad had his diagnosis, as this is something as a family, we had never spoken about. So, towards the end of his life, we had to bring up the subject but if we had had “My Life, My Wishes”, we could have spoken earlier about this. We would have known his wishes and would have known how he wanted to be cared for.”

Kim Bailey – May 2019

An ACP Champion’s Perspective on the My Life, My Wishes Document in Powys

Kathryn Jarvis from Credu shares her reasons for becoming an Advance Care Champion.

"I put my name down to do the training because I believe people should have the death they want.We don’t want to think about dying but it’s going to happen to every single one of us at some point in our lives.

As an Adult Carers Outreach Worker I work with unpaid family and friend carers of people with a wide range of health issues, mental ill health and learning disabilities.

As an ex-carer, caring for my grandad I remember how unsettling it was not really knowing what he wanted and navigating things as best we could.

Future care and our wishes is so important. Do we really spend time to consider where we’d want to be cared for and by who, what treatment we’d want or what we really don’t want. Have we made a will and do have our wishes on funeral arrangements in place? It maybe that you have feelings about the type of service you want- what music, poems, readings or hymns would you want, whether you want to be buried or cremated.

The ‘My life, my wishes- advanced care planning document.’ Has everything in one place. It’s an easy to read document you can pick up and put down when you want. You can add to it. You can discuss it with those around you and make your wishes known."

Are we ready?

What Next?

In difficult times having an Advance Care Plan can help make all the difference. It’s not just for people who are terminally ill. It’s a document that enables us to change our attitude to death and dying, facilitating an opening to enable those important conversations at the end of life. The more death becomes a part of everyday life, for people of all ages, the easier it will be to talk about. If we begin these conversations with young people, then maybe some of the stigma and discomfort will start to ease. If you, or your organisation would like to be an Advance Care Champion there's another training session at PAVO offices, Ddole Road, Llandrindod, LD1 6DF on Wednesday 17th July from 10.00-3.30, to book contact the Palliative Care team using the contact details below. If you would like a copy of the Advance Care Plan for yourself or someone you know, visit the PTHB Palliative Care – My Life My Wishes website, call the palliative care team on 01686 623558 or e-mail charity.garnett@nhw.wales.uk

Mandy Dean- Credu, Charity Garnett-Palliative Care Team & Kathryn Jarvis-Credu, Advance Care Champions.