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. 

‘Fy Mywyd, Fy Nymuniadau’ - Byw Nawr (Dying Matters) 13-19 mis Mai 2019

Y thema ar gyfer yr ymgyrch Byw Nawr / Dying Matters eleni yw ‘Ydyn ni'n Barod’, ac mae'n edrych ar y camau ymarferol ac emosiynol y mae angen i bob un ohonom eu cymryd i fod yn barod ar gyfer diwedd ein bywydau. Mae arolygon barn yn dangos mai dim ond tua thraean o bobl sydd wedi ysgrifennu ewyllys neu feddwl am eu hangladd, ac mae hyd yn oed llai wedi meddwl am eu gofal diwedd oes, neu wedi gwneud penderfyniad ynghylch rhoi organau.

I fynd i'r afael â hyn, mae Bwrdd Iechyd Addysgu Powys yn defnyddio wythnos Byw Nawr i lansio ‘Fy Mywyd, Fy Nymuniadau’, dogfen a luniwyd i roi cyfle i bobl archwilio a myn

egi eu dymuniadau am eu gofal yn y dyfodol.  Mae pobl sy'n ystyried Cynllunio Gofal Ymlaen Llaw yn aml yn cael gwell ansawdd bywyd ac yn fwy tebygol o farw yn y man o'u dewis.  Gall cynllunio ymlaen llaw hefyd wneud bywyd yn llawer haws i anwyliaid sy'n galaru.

Mae’r ddogfen ‘Fy Mywyd, Fy Nymuniadau’ wedi'i llunio i fod yn hawdd i'w llenwi ac o fewn cyrraedd pawb, beth bynnag yw eich oedran neu gyflwr eich iechyd.  Mae hanner cant o ‘Hwyluswyr Cynllunio Gofal Ymlaen Llaw' o bob cwr o Bowys, o fewn Bwrdd Iechyd Addysgu Powys ac o gartrefi gofal, cartrefi nyrsio, cefnogwyr Gofalwyr CREDU ac eraill wedi derbyn hyfforddiant i gynnig help gyda'r broses.  Mae digwyddiadau'n cael eu cynnal ledled Powys yn ystod wythnos ‘Byw Nawr’ i lansio'r ddogfen a fydd ar gael gan hwyluswyr Cynllunio Gofal Ymlaen Llaw a hefyd drwy'r wefan.

Bydd Rhiannon Jones, Cyfarwyddwr Nyrsio Bwrdd Iechyd Addysgu Powys yn lansio'r ddogfen yn swyddogol rhwng 10-12 ddydd Llun 13 Mai 2019 yn yr MRC yn Llandrindod.

Dywedodd Rhiannon: “Rwy’n falch dros ben bod Bwrdd Iechyd Addysgu Powys yn lansio ‘Fy Mywydi, Fy Nymuniadau’ i’n helpu ni gyd i gael y sgyrsiau pwysig hyn.  Mae Cynllunio Gofal Ymlaen Llaw wedi dangos ei fod yn gwella canlyniadau ar gyfer cleifion a’u teuluoedd.  Bydd y ddogfen hon yn helpu ein staff i ddarparu gofal sydd wedi’i ganolbwyntio ar yr unigolyn ar draws holl gymunedau Powys.”

Llenwodd Kim Bailey, o Ffordun ger y Trallwng, y ddogfen yn ystod y cyfnod prawf.  Dywedodd Kim: “Gwnes i weld y broses o lenwi ‘Fy Mywyd, Fy Nymuniadau’, yn ddefnyddiol iawn, gan ei bod yn anodd mynd i'r afael â rhai pynciau ac roedd yn syml ac yn hawdd ei defnyddio. Helpodd y ddogfen i mi roi popeth yn ei le ac i siarad â fy nheulu.  Mae'r ddogfen ar gael i unrhyw un sydd ei hangen.”

Dywedodd y Nyrs Staff Emily Blizard o Ward Graham Davies yn Ysbyty Llanidloes: “Rwy'n gwybod o fy mhrofiad fy hun pa mor ddefnyddiol yw hi i deuluoedd os yw eich  anwyliaid yn glir am eu dymuniadau.  Ar adeg o ansicrwydd a straen mawr mae'n grymuso teuluoedd i wybod eich bod yn eu cefnogi i gyflawni eu dymuniadau. Fel nyrs staff rwy'n credu y bydd y ddogfen hon yn gwneud gwahaniaeth mawr i fywydau llawer o deuluoedd drwy osgoi rhywfaint o ofid ar ddiwedd oes.”

Dywedodd y Nyrs Gymunedol Tamsyn Cowden o Nyrsys Ardal Llanfair-ym-Muallt: “Rwy'n credu y bydd ‘Fy Mywyd, Fy Nymuniadau’ yn cael effaith gadarnhaol ar fy nghleifion trwy ein helpu ni i gael sgyrsiau gonest yn gynt.  Mae angen i bob un ohonom feddwl am ein dymuniadau am ein gofal yn y dyfodol, ac i siarad amdanynt fel nad ydym bob amser yn gwneud penderfyniadau mewn argyfwng.  Er mwyn darparu gofal tosturiol sy'n canolbwyntio ar yr unigolyn, mae angen i ni ddeall beth sydd bwysicaf i'n cleifion, a bydd ‘Fy Mywyd, Fy Nymuniadau’ yn ein helpu i wneud hynny.”

Dywedodd Faith Gupta, Rheolwr Tŷ Morgannwg House, yn Aberhonddu: “Rwy’n gefnogol iawn o gyflwyno ‘Fy Mywyd, Fy Nymuniadau’.  Bydd y ddogfen hon yn help mawr i'm trigolion a'u teuluoedd.  Rydym wedi helpu i brofi'r ddogfen hon ac mae'r ymateb gan staff a theuluoedd wedi bod yn wirioneddol gadarnhaol.”’

Dywedodd Charity Garnett, Nyrs Gofal Lliniarol Cymunedol sydd wedi'i lleoli yn y Drenewydd ac sydd wedi bod yn rhan o lunio'r ddogfen: “Mae datblygu ‘Fy Mywyd, Fy Nymuniadau’ mewn partneriaeth â'r gymuned a gweithwyr gofal iechyd proffesiynol o bob cwr o Bowys a Chymru wedi bod yn gyfle gwych. Rwy’n gobeithio y bydd y ddogfen hon yn grymuso llawer o bobl i gael y sgyrsiau pwysig hyn gyda'u hanwyliaid a chyda gweithwyr gofal iechyd proffesiynol.  Nid yw hi byth yn hawdd wynebu diwedd ein bywydau, ond rydym yn gobeithio y bydd y ddogfen hon yn ein helpu i fod yn fwy agored am ein dymuniadau a'n pryderon, ac yn ei droi bydd yn ei gwneud yn haws i gefnogi ein gilydd.”

My Life My Wishes - Byw Nawr (Dying Matters) week 13-19th May 2019

A new Advance Care Planning process is being launched across Powys as part of Byw Nawr Dying Matters Week to give people the chance to explore and express their wishes for their future care.

The theme for this year’s Byw Nawr/ Dying Matters campaign (13 to 19 May 2019) is ‘Are We Ready’, and looks at the practical and emotional steps we all need to take to be ready for the end of our lives. Opinion polls show that only about a third of people have written a will or thought about their funeral, and even fewer have thought about their end of life care, or made a decision about organ donation.

To address this, Powys Teaching Health Board are using Byw Nawr week to launch ‘My Life My Wishes’, a document designed to give people the chance to explore and express their wishes for their future care.   People that engage with Advance Care Planning (ACP) often achieve better quality of life and are more likely to die in a place of their choosing.  Planning ahead can also make life much easier for grieving loved ones.

 The ‘My Life My Wishes’ document is designed to be easy to complete and accessible for everyone, regardless of your age or state of health.  Fifty ‘Advance Care Planning Champions’ from across Powys, from within Powys Teaching Health Board and from care homes, nursing homes, CREDU Carer supporters and others have been trained up to offer assistance with the process.  Events are being held across Powys during Byw Nawr/Dying matters week to launch the document which will be available from ACP champions, and also through the website.

Rhiannon Jones, Director of Nursing for Powys Teaching Health board will officially launch the document from 10-12 on Monday 13^th May 2019 at the MRC in Llandrindod Wells. 

Rhiannon says: “I am thrilled that Powys Teaching Health Board is launching ‘My Life My Wishes’ to help all of us have these important conversations.   Advance Care Planning has been shown to improve outcomes for patients and their families.  This document will help our staff provide person centred care across all the communities of Powys.”

Kim Bailey, from Forden near Welshpool, completed the document during its testing phase. She says: “I found completing My Life, My Wishes, really useful, because it is hard to approach certain subjects and it was really straightforward and easy to use.  The document helped to put everything in place, and helped me to talk to my family. The document is now there for anyone that needs it.”

Staff Nurse Emily Blizard from Graham Davies Ward in Llanidloes Hospital says: “I know from my own experience how helpful it is for families when your loved one is clear about what their wishes are.  At a time of great uncertainty and stress it is empowering for families to know you are supporting them to achieve their wishes.   As a staff nurse I think this document will make a big difference to many families’ lives by avoiding some distress at the end of life.”

Community Nurse Tamsyn Cowden from Builth Wells District Nurses says: “I think My Life My Wishes will make a positive impact on my patients by helping us to have honest conversations sooner.  We all need to be thinking about and talking about our wishes for our future care, so that we are not always making decisions in a crisis. To deliver person-centred, compassionate care, we need to understand what is most important to our patients, and ‘My Life My Wishes’ will help us to do that.”

Faith Gupta, Manager of Morgannwg House in Brecon, says: “I really support the introduction of ‘My Life, My Wishes.’ This document will be a great help to my residents and their families.  We have helped to test this document and the response from staff and families has been really positive.”

Community Palliative Care Nurse Charity Garnett based in Newtown who has been part of designing the document says: “Developing ‘My Life My Wishes’ in partnership with the community and health care professionals from across Powys and Wales has been a wonderful opportunity. I hope that this document will empower many people to have these important conversations, both with their loved ones and with health care professionals.  Facing the end of our lives is rarely easy, but we hope this document will help to make us more open about our wishes and concerns, which will make it easier to support each other.”