A report published today has raised questions about whether government recommendations have improved the experiences of those living with terminal illness.
The report from Sheffield Hallam University, funded by Marie Curie, found that in spite of 76 government publications impacting terminal illness since 2004, local end of life care services have not improved.
The study has said that an excess of information has diluted focus among commissioners and providers, making it difficult to ensure consistency and quality of local end of life care services.
The study found that not enough attention has been afforded to how policies are implemented and as a result there is uncertainty of whether government recommendations have actually led to improvements in patient care.
The report comes on the same day as the Government will respond to the Review into Choice at the End of Life.
The report’s authors say that, while there has been progress in some areas, national policy lack s clarity and require a greater emphasis on evidence-based practice.
They also note that there is a lack of understanding over the resources and budgets that should be provided to terminal illness care.
The report recommends that those commissioning services should be responsible for ensuring that services are delivered as intended and that there are appropriate frameworks in place to monitor and evaluate efficacy and quality.
This report coincides with new Marie Curie data showing more work is needed to ensure that services can meet the current level of need.
The data shows that the estimated numbers of, and proportion of deaths from conditions requiring palliative care, including Alzheimer’s disease, dementia and senility, are increasing rapidly.
The analysis of national mortality data from 2012 to 2014 reveals that - at the very minimum - more than seven out of every ten people die from a condition that needs palliative care. When conditions that contributed to a person’s deaths are considered, as well as those that were the underlying cause, this rises to nine in every ten deaths.
Dr Fliss Murtagh, Reader and Consultant in Palliative Medicine, Cicely Saunders Institute, King’s College London, said: “The new data analysis shows quite clearly that the number of people requiring palliative care is increasing rapidly. Palliative care therefore needs to be seen as a priority – it needs to be properly planned and resourced, otherwise those approaching the end of life will miss out on the care they need. I am pleased to see my work has been updated, and hope that these robust estimates of need will be used to underpin palliative care strategies going forward.”
Dr Jane Collins, Chief Executive for Marie Curie, said: “This new data shows us that the need for palliative care is continuing to increase as people die with more complex needs and conditions.
“However, the Sheffield Hallam University report highlights that there has been little action to drive quality or choice from the Government despite a wealth of announcements and documents aimed at tackling this crucial issue.
“If we are going to help people demand better palliative care, the Government and NHS England must take account of the growing need for these services and deliver solutions which can be easily understood and accessed by those who need them.
“Without this more people will go without the care they desperately need, more will die where they don’t want to and more families and friends will have their lives devastated by the negative experiences of their dying loved ones.”
Dr Julie Skilbeck, Sheffield Hallam University’s Centre for Health and Social Care Research, said: “England’s palliative and end of life care policies are key drivers for commissioning, planning and delivering services for people living with terminal illness. However, there are a large number of strategy and guidance documents in circulation. The profusion is making it extremely difficult for commissioners and practitioners to develop and implement services for people requiring end of life care.
“It is important that commissioners and practitioners in England have an overarching piece of guidance that is specific, and lasts long enough to be applicable to all palliative care services.”
