#endoflifecare

Former carer with terminal cancer urges families to talk about end of life

Diane Thomas cared for her late mum, Doreen, who had vascular dementia, after moving her from Yorkshire into her home in 2021. Just six weeks later she discovered the lump. Her mum died earlier this year, and Diane has since been told she has stage 4 cancer.

With support from Marie Curie’s 2Ts Advance and Future Care Planning service, Diane has prepared an advance care plan, power of attorney and do not resuscitate form.

Planning ahead with Marie Curie

The service, funded by the Tywi Taf Primary Care Cluster of Hywel Dda University Health Board, involves a senior nurse working with GP surgeries and care homes in the area. It helps people draft advance care plans, allowing them to think about, prepare and plan for their future care and end of life.

Marie Curie says many people in Wales are underprepared for the final chapter of life. A recent survey found almost a third (28%) have not given it any thought, while nearly 4 in 10 (38%) do not put plans down on paper. More than a third (33.7%) fear talking about end of life planning, while one in three (33.6%) believe they have plenty of time to arrange plans.

Diane’s story

Diane said:

“It’s important to me to have all this in place, so my children know and understand what I want. It was hard watching my mum, because she lived here with me, and I’ve also seen it with other members of my late husband’s family. I’ve seen them going on and getting less able to do things, and I don’t want to be like that.”

In August, Diane saw a doctor at Priory Grove, Carmarthen, where her daughter works, and received confirmation of her prognosis. She was then put in touch with Diane Milner, Marie Curie Senior Nurse at the 2Ts Advance and Future Care Planning service.

Professional voices

Diane Milner, who was a district nurse for 32 years, said:

“Advance care planning (ACP) is for everyone, at any stage of life, and helps people to think about, prepare and plan for their future care and end of life. It helps people to discuss and decide what is important to them, as well as sharing wishes with others. It means loved ones know what you want if you ever can’t speak for yourself.”

Dr Kerry Phillips, Tywi Taf Cluster Lead and GP Partner at Meddygfa Taf, added:

“This service is an important opportunity for anyone to record their future care wishes so that if the need arises, your expressed wishes are followed.”

Jill Paterson, Director of Primary Care, Community and Long‑Term Care at Hywel Dda University Health Board, said:

“Advance and Future Care Planning is a vital part of ensuring people’s wishes are understood and respected. The work Marie Curie is doing with the Tywi Taf Cluster is helping individuals and families have these important conversations, often at very difficult times.”

Support available

Marie Curie supports people with any illness they are likely to die from, including dementia, heart, liver, kidney and lung disease, motor neurone disease, Parkinson’s, and advanced cancer. The charity provides expert care and support in people’s homes, in its hospices and over the phone via its free Information & Support helpline.

In Wales, the My Life, My Wishes document exists across all health board areas to support people with planning for their care at end of life. Marie Curie also offers an End of Life list on its website, a practical checklist curated by clinicians to help people prepare across five categories: legal and money matters; people, pets and things important to me; advance care plan; funeral or celebration of life; and making and leaving behind memories.

For more information about Advance Care Planning, contact: Futurecareplanning@mariecurie.org.uk

#BreastCancer #Cancer #Carmarthen #EndOfLifeCare #HywelDdaHealthBoard #HywelDdaUniversityHealthBoard #MarieCurie #TywiTafPrimaryCareCluster

Diane Thomas wearing a Marie Curie uniform, smiling gently, sharing her story about advance care planning.
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🇬🇧 BREAKING: UK lawmakers vote to advance assisted dying legislation for the terminally ill — a potential generational shift in British law.

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End of life care in Wales ‘at breaking point’ health charity warns

Marie Curie Cymru is calling on the next Welsh Government to ensure everyone has access to high-quality care in the right place at the right time.

The leading end of life charity launched its Manifesto for next year’s Senedd election today at Cardiff Bay’s Norwegian Church, where attendees heard from Peter and Eiry – both of whose parents experienced extended periods of time as hospital inpatients in their final months.

Marie Curie – which provides expert end of life care for people with any illness they are likely to die from – estimates a cost of £1.3 million per day2 to the NHS in Wales in beds for people in their last 12 months of life.

While for some, hospital will be the right place to access the care they need, for many others, support could be better provided at home or close to home.

Peter Midlane’s mum Joyce, spent six months in various different hospitals across Carmarthenshire before she was able to go home to be cared for before her death at the age of 97.

Pete, of Pontyates,said: “When social services eventually put a care package together, it was horrendous.

“I was expecting a middle-aged male nurse, but instead it was 18 to 20-year-old students with no driving licence, relying on public transport to get to us, living in the middle of nowhere. So, they were always hours late. It was just impossible. And it wouldn’t have been so bad if they were care students, but they were engineering students…they had no idea how to look after elderly people. They had zero experience.”

It was at that point Pete took a leave of absence from his job, and then he and mum received support from Marie Curie.

“It’s difficult to describe the relief. It’s mixed emotions as you know it means end of life care and that the end is coming. But the relief that there’s somebody there that you can talk to is wonderful. They looked after my mum and me. When you find out what these nurses are capable of…it is absolutely vital. Marie Curie nurses are very special people.”

Pete and his Mum

Gareth Miles died at home in Llanddarog, surrounded by his family, in September 2023. Prior to his last week, he had spent 10 weeks in hospital. He had Parkinsons.

His daughters Branwen, Eiry and Elen are backing Marie Curie’s calls for better care at home for people with a palliative or end of life care condition.

Talking of his hospital stay, Elen said: “I think it just reflected unfortunately the lack of link between NHS and social care. Unfortunately, he couldn’t leave hospital at an earlier date after that initial series of illness to go into a more comfortable home or medical environment more suited to him. The environment was very bright and noisy, the staff were lovely, but it wasn’t the right environment for him for weeks on end.”

He was able to come home thanks to Marie Curie support.

Eiry said: “When he laid on the bed at home, he just said, “Oh, dyma braf” – this is nice in Welsh – because it was just quiet and peaceful, there was birdsong outside and people he knew around him. When the Marie Curie staff came overnight, having someone there sitting with them meant that we could have a break and sleep because we hadn’t been sleeping.”

Branwen added that the Marie Curie Nurses allowed them to relax, and cared for the whole family, as well as dad.

Marie Curie Senior Policy Manager, Natasha Davies, said: “End of life care in Wales is at breaking point. Gaps in care and a system under severe pressure mean too many people are spending their final days isolated, in pain, and struggling to make ends meet. Carers are being left abandoned without support. Services and staff are struggling to deliver the care people need, when and where they need it. There is an urgent need for change.

“Truly transforming end of life care means making sure people can access the care they need, in the right place at the right time. It means getting the basics right to tackle inequity; by understanding gaps in care so services deliver timely, personal, and high-quality care for everyone in Wales, no matter who they are or where they live.

“It also means having meaningful conversations with dying people about their care preferences, so their wishes are heard and respected. And it means protecting people living with a terminal illness from poverty, and making sure carers and loved ones receive proper support.

“We cannot afford to waste time getting this right. The next Welsh Government must show strong leadership and commit to the bold, radical actions that are needed to truly transform end of life care.”

#Carmarthenshire #EndOfLifeCare #Llanddarog #MarieCurie #Pontyates

Gareth and JoycePete and his Mum
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Learn more about our programs: pcsbv.ca/programs/

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Folk with dementia stuggle to see the benefits?

Phewww.

Not sure who is going to see the "benefits" to the patient.

But it's forced onto vulnerable and dependent folk?

Got this scenario covered in your ?

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🌍💜 Today we observe World Hospice and Palliative Care Day, a day dedicated to improving the quality of life for people affected by serious health issues. This year’s theme is “Leave No One Behind - equity in access to palliative care.”

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Join us in raising awareness and supporting hospice and palliative care services worldwide. Whether you attend a local Voices for Hospices event, donate, or share your story, your involvement makes a difference!

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#globalnews #Canada #Health #Endoflifecare #Father
globalnews.ca/news/10556468/ho

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#globalnews #Canada #Health #Endoflifecare #Father
globalnews.ca/news/10556468/ho

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globalnews.ca/news/10556468/ho

2024-05-19

@Christo
I do respect Liz Carr's opinion, but I would be more convinced if she were to show me how not having an Assisted Dying bill would have any influence on the people that already make the terminally ill feel like they are a burden. She feels that would get worse, but since bastards always will be bastards I don't see that it would make any difference!

#EndOfLifeCare
#AssitedDying
#TerminalCare
#Dignity

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