End of life care and bereavement ‘must be a priority’ for incoming Welsh Government

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

Sian Tucker, Marie Curie acting Clinical Nurse Manager for the Cardiff and the Vale Hospice at Home service, said: "Every patient we have gone into both during the first wave and now during this second wave, have been really poorly and deteriorated really quickly.

"Everyone involved is doing the best they can, it's just difficult with current manpower in (all) the health services, people are shielding, or they're in self-isolation, and that makes it even more difficult when services are stretched. Covid has had a huge impact."

Ceridwen Hughes, from Mold, whose mother chose to spend her last few weeks at home, said: "To navigate end of life care for a loved one can be a stressful and dehumanising experience if co-ordinated care is not in place. 

"The support of organisations such as Marie-Curie at your time of need is essential. Priority needs to be given to those who need support families and individuals and it is essential the Welsh Government reviews its existing provision and works towards a more compassionate and fit for purpose service at a time when it is needed most."

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 resource 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.