‘Broken’ End of Life Care is ‘Devastating Families,’ Marie Curie Warns

End of life charity Marie Curie has written an open letter to Prime Minister Andy Burnham today urging him to match words with action as the Assisted Dying Bill returns to Parliament.

Matthew Reed, the charity’s chief executive, is calling on the Prime Minister to grasp the nettle and transform end of life care in England describing our current system as ‘broken’, insisting the UK Government must do better.

He writes:    “For far too many people today, experiences of the end of life are marked not by care and dignity, but by avoidable pain, poverty, and significant uncertainty around where to turn for help. Our recent research identifies that nearly one in three dying people have unmet palliative care needs. That equates to over 200,000 people across the UK each year not receiving the care and support they need at the end of their lives.

“With our population ageing, without additional significant intervention, this figure will only grow. We believe the UK can and must do better than this.”

In England, opportunity for change lies on the horizon with the Modern Service Framework for Palliative and End of Life Care due to be published by the UK Government this autumn.

The new Prime Minister has rightly acknowledged that palliative care is in crisis, but has yet to set out how his government intends to close the huge gaps in end-of-life care. In response, Marie Curie wants to see the framework published soon and has called for initial short-term investment to support its delivery. By improving access to palliative care in the community, this would help to drive a shift away from expensive crisis-driven hospital care.

Mr Reed explains:  “In order to drive rapid improvements in people’s experiences of end-of-life care across our country, a major delivery effort will be required. That’s why we are calling on your Government to now accelerate and deliver the much -delayed Modern Service Framework, supported by a time-limited three-year palliative care and end of life care transformation fund to enable its delivery and catalyse the scale of change required.  “This wouldn’t be about pouring more money into the status quo.  It’s about enabling a transformed approach and focus within the ‘cradle-to-grave NHS’ to ensure patients get access to the care they need and deserve at the end of their lives.”

As well as public support for change, there is a strong economic argument the charity hopes will win over the Treasury. Mr Reed concludes:

“NHS data on patterns of care shows that in England 14% of all emergency admissions to hospital, and 30% of all bed days spent in hospital, involve people in the last year of life. The current lack of adequate access to palliative care in the community means that dying people and their carers often have no alternative but to attend A&E, call out an ambulance or be admitted to hospital at crisis point when they need help. That is not delivering care where many patients want to be, and it is extremely costly for our NHS.”

If the Terminally Ill Adults (End of Life) Bill were to pass, the law would change in both England and Wales. The palliative and end of life care system in Wales is in crisis. Urgent action is required from the recently elected Welsh Government and commitments made prior to the election must now be reflected in the Programme for Government.

Jon Antoniazzi, Associate Director for Policy and Public Affairs at Marie Curie Cymru, said:    “The palliative and end of life care system in Wales is under immense pressure. Too many people are dying in isolation, in pain and without the care they need. Urgent action is required to ensure everyone can access the right care, in the right place, at the right time.

“Marie Curie Cymru has set out the changes needed to policy and practice to fix end of life care in Wales, and as we await the Programme for Government, we hope to see the Plaid Cymru Government commit to its pre-election promises to do this. This must include action to improve how services are planned and delivered, a sustainable funding solution, investment in the palliative care workforce and vast improvements in community and out of hours care for people living with a terminal illness.

“We stand ready to work with the Welsh Government to ensure that ambitions translate into meaningful change that delivers better care for all.”

Marie Curie stands neutral on assisted dying. The letter can be read in full at www.mariecurie.org.uk/media