End of life care ‘must be a priority’ for incoming Welsh Government, says leading charity

End of life care ‘must be a priority’ for incoming Welsh Government, says leading charity

Marie Curie points to growing demand for high quality palliative care for ageing population with increasing comorbidities

End of life care must be a priority for the incoming Welsh Government now more than ever, a charity caring for dying people and the bereaved says.

Marie Curie, the UK’s leading end of life charity, is calling on all political parties to include a plan for a new end of life care strategy in their manifestos for the upcoming Welsh election.

Marie Curie says that by 2040, demand for palliative care is set to increase by 42 per cent, with a rapidly growing and ageing population, combined with an increase in comorbidities, meaning that providing high quality and specialised care is becoming increasingly important.

The organisation provides expert care and support to thousands of people living with a terminal illness, and their loved ones, in its Cardiff and the Vale Hospice in Penarth and in their own homes across Wales.  

In West Wales, the charity also provides a specialist dementia service for people in their own homes, care homes and hospital settings, giving support, information and advice to people living with all forms of dementia and their carers, also liaising with other health providers as part of the service. 

In North Wales, the Marie Curie Rapid Response service provides urgent care and support overnight to dying people and their loved ones.

The charity also provides telephone and online support to patients, their families or people who have been bereaved through its award-winning Information and Support service, and also offers bereavement support across Wales through the Bereavement Companions service. 

Lowri Griffiths, Marie Curie Head of Policy and Public Affairs in Wales, said: “Dying, death and bereavement are unavoidable and an inevitability that every individual will face as part of the cycle of life.  

“Under the most tragic circumstances, Covid-19 has brought all of this to the forefront of the nation’s attention and issues surrounding how, where and why people die have become more familiar to us all.

“Despite this, death remains a taboo subject with many people reluctant to have open conversations about what matters most at the end of life.”

Lowri added that to improve the experience of those living with a terminal illness, their families and carers, the next Welsh Government must assert end of life care as a key focus for the next Parliamentary term.

“Coronavirus has both highlighted and exacerbated many challenges faced by those who use palliative care services, and those working within the field,” she added.

“Never has it been more important to have a well-resourced health and social care service, with a workforce that feels supported and equipped to deliver accessible and value-based end of life care.”

The three priority areas and specific actions the charity is calling all political parties to include in their manifestos are:

• Welsh Government and NHS Wales must ensure equitable access to palliative care services
• The Welsh Government and statutory partners must identify and meet expectations of everyone approaching the end of their life
• The Welsh Government and statutory partners must oversee the delivery of a person-centred and universal bereavement service in Wales

Angela Dowson, Senior Nurse in the Marie Curie specialist dementia service in West Wales, said she hopes dementia would be recognised as a terminal illness within any end of life planning.  She and her colleagues have continued to provide support to people at home, in care homes and hospitals living with all forms of dementia throughout the pandemic – either via phone, or by staggering in person visits.

“Dementia is a terminal illness, those with this diagnoses are palliative and they and the people who care for them are going to need me at some point in the future as the symptoms of advancing dementia become challenging ,” she said.

“It’s important we have discussions with them and their loved ones early on about advanced care planning and what their wishes would be at end of life, especially in current times with Covid having such an impact on many different services, it’s vital that we know people’s wishes are being met.”

Lesley Bethell, Chair of Compassionate Cymru and Patient and Public Representative at the End of Life Care Implementation Board, said the impact of good end of life services and support contribute to the wellbeing of everyone involved in someone’s death.  She added: “In Wales we can and do deliver the best end of life care to some who need and benefit from it, but the harms which result to those who are unable to access this are not always apparent.    In my role and in my own life experience I am well aware of the awful consequences when services and support fail.

“Few of us are comfortable with talk around death and dying, but a government must shoulder the responsibility for the wellbeing of its population at all stages of their lives, and all of us will die. It is imperative that the Government now places this issue firmly at the core of its care for us and devotes a greater proportion of source to this issue. It is a matter which has caused great pain for so many, especially during the pandemic, as we deal with one of the two common experiences we all share.”

If you can back the charity’s campaign to prioritise end of life care, visit the campaign page here. **