Don’t Let the Plan Run out for Dying People in Wales

Bethan Edwards calls for an end of life care plan to be put in place as a matter of priority, as the current scheme ends on 31 March.

As we approach what we hope is the end of the pandemic, and we learn to live with Covid-19 as part of our day to day lives, we have reached a pivotal opportunity for improving palliative and end of life care in Wales. 

Dying, death, and bereavement have been at the forefront of the nation’s attention over the last two years. According to provisional numbers from the Office for National Statistics, over 70,000 people died in Wales throughout the pandemic. It is estimated that each death leaves approximately 9 people bereaved. In Wales, this means that 600,000 people may have been left bereaved. 

Covid-19 has meant that thinking about end of life – whether a loved one’s or our own – has become inescapable for many of us. Albeit in unfortunate circumstances, this has also meant that more of us are coming to realise the importance and value of planning for end of life. Newly published findings from research led by the Marie Curie Research Centre at Cardiff University reveals that four out of five people across Wales (80 percent) think that end of life care should be given equal priority in the NHS as care for people in any other stage of life.

With that backing, Marie Curie and Motor Neurone Disease Association are urging people to sign a petition calling on the Welsh Government to stick to its commitment of publishing a replacement to the current End of Life Care Delivery Plan, which comes to an end this month.

Health boards across Wales are required to deliver palliative and end of life care and support in line with the End of Life Care Delivery Plan. End of life services will still be commissioned and delivered when this plan comes to an end, but without a national plan to take its place, we risk losing the strategic focus and decade of progress that has been made around the planning and delivery of services. 

A replacement to the End of Life Care Delivery Plan and an overarching Programme is an opportunity to ensure that end of life care is given the same priority as care and support at any other phase of one’s life.

As well as their commitment to a replacement plan, last year the Welsh Government confirmed a new dedicated End of Life Care Programme. In the context of the pandemic, it was a delight to see such focus being given to end of life care in a way that has not been seen before. However, for this Programme to reach its full potential, it needs to include a clear and bold implementation/action plan, an ambitious timetable, sustainable funding, and sufficient staff to enable its delivery. 

Usually, around 34,000 people die in Wales each year and at least 75% would benefit from some form of palliative care (Marie Curie, 2015, Triggers for palliative care – Improving access to care for people with diseases other than cancer). For many reasons, however, 25% of these people will not have access to the care and support that they need to die well. This leads to people dying in pain, without the support they need and deserve, and their preferences and wishes about how they wish their life to end are left unfulfilled. This not only impacts the person who is dying, but the loved ones left behind. 

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A replacement to the End of Life Care Delivery Plan and an overarching Programme is an opportunity to ensure that end of life care is given the same priority as care and support at any other phase of one’s life. It is a chance for the Welsh Government to provide the bold leadership needed to drive real improvements in how we plan and deliver end of life care and support across Wales and it is a positive step towards ensuring that everyone in Wales has access to the care they need to experience the end of their life on their own terms.

The petition ‘Don’t let the plan run out for dying people in Wales’ can be found here.

All articles published on the welsh agenda are subject to IWA’s disclaimer.

Bethan Edwards is Policy and Public Affairs Manager for Marie Curie (Wales).

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