Disjointed policies, fragmented planning and inadequate preparation to support people dying and those bereaved mean that the UK is ‘ill prepared’ to respond to the needs and realities of its rapidly ageing population, according to the authors of a new Institute for Policy Research (IPR) Policy Brief released today (Tuesday 12 September).
The Policy Brief highlights significant challenges faced in certain parts of the country which it suggests should act as a catalyst to policy-makers to radically rethink our overall approach to death and dying by better joining up different services.
These include insufficient access to palliative care; lack of support for families whose children are dying; inadequate and badly reformed bereavement benefits; growing funeral poverty; lack of burial space; and concerns regarding crematoria capacity. It suggests that instead of being thought through holistically, public policies on death have evolved piecemeal over decades and in silos, leading to significant variance in the quality and quantity of policy and guidance available throughout the country.
Using the opportunities afforded by national and regional devolution, it calls for a review into all policy areas that shape what happens both before death and immediately afterwards, including for different demographic groups and across different geographical areas. New policies must be better joined-up to ensure services are fit for purpose, future proofed and evidence-based, it argues.
It advocates that the devolution of power and resources has a real potential to revolutionise care and services for dying and bereaved people in the UK, but that more must be done to share best practice between different areas. Singling out Scotland as having developed innovative, progressive policies in respect of end of life care, it urges other parts of the country to learn from practices put in place north of the border.
Last year around 600,000 people died in the UK, estimated to have directly affected over two million people. Yet despite the scale of the issue, the authors reflect that for too long sensitive issues surrounding death and dying have been pushed into the long grass; not featuring prominently in policy or parliamentary debates, absent from the airwaves, and barely registering in the public debate.
This lack of focus has led to a general ill-preparedness right across society in facing up to death and its social and economic consequences – policy challenges that are set to be exacerbated in the years to come by a rapidly ageing population.
The Policy Brief highlights how:
- one million people are providing care for someone with a terminal illness, but only one-in-six employers have policies in place to support this population
- one in four people who need palliative care misses out. A further 49,000 children and their families are dealing with a life-limiting or life-threatening condition and 6,500 are waiting for an organ transplant
- after a death, 58% of people bereaved of a partner report lower levels of household or disposable income
- as space for burial decreases and cremation costs rise, 45,000 annually seek financial assistance from the state to meet the cost of a funeral. The cost of the Social Fund was £38.6 million in 2016-17 yet only £100,000 was recovered from estates.
Lead author, Dr Kate Woodthorpe, explained: “For too long we have been complacent about death’s social and economic consequences, and our policy responses. Government can no longer ignore the many, many challenges outlined in this brief. Whether these be the result of incoherent policies, competing priorities, resourcing issues, inadequate evidence-gathering or simply poor foresight and planning, death does not conveniently go away. We are seeing growing signs that the current systems are not sustainable and given the predicted rise in the death rate in the next two decades, we need to act now.
“National and regional devolution is showing early indications that innovation and modernisation is possible, and Scotland is arguably leading the way with ambitious targets and re-organisation of key policy areas. It is up to the rest of the country as to whether they wait to see how well Scotland fairs, or whether they use this as an opportunity to review, consolidate and improve how they support dying, death and bereavement.”
Covering 16 policy areas which impact services and support surrounding death, dying and bereavement, the IPR Policy Brief is authored by leading voices from policy, practice and academia to act as a catalyst for change.
The findings of the Policy Brief will be launched later today at an event at the University of Bath in London.