Experts have warned that the UK does not have adequate support for people who are dying or have been bereaved. A coalition of charities, academics and funeral professionals have highlighted the “disjointed policies, fragmented planning and inadequate preparation” that suggests a postcode lottery when it comes to care before and after death, affecting millions of people every year.
They have shared their views and insight in a wide-ranging report published by the Institute for Policy Research and University of Bath. Covering all aspects of death care, from end of life support to cremation and burial, it highlights numerous issues, including the uneven geographic reach and funding of vital end of life care services around the UK.
Among its findings, the 112-page report has revealed that a quarter of all terminally-ill people who need palliative care cannot access the support they need. The report also suggests that the financial support provided by the Government to the bereaved, such as the Social Fund Funeral Payment and Bereavement Support Payment, is inadequate. It also warns of other issues, including a looming burial shortage crisis.
Throughout the report, contributors have highlighted how policies already active in Scotland are setting standards that should inspire support for the bereaved and dying in the rest of the UK.
The report’s lead author, Dr Kate Woodthorpe, said: “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.”
It’s hoped that the publication of the report will act as a “catalyst” to improve policy and provide better, more coordinated support for grieving families and people at the end of life.
Key points highlighted in the Death, Dying and Devolution report include:
- Around one million people are caring for someone with a terminal illness, but only one in six employers have policies to support these carers.
- One in four people who need palliative are missing out on vital support.
- 49,000 children and their families are dealing with a life-limiting or life-threatening condition.
- 6,500 people are waiting for an organ transplant and one in ten will die before they receive a donation.
- After the death of a partner, 58 per cent of people report lower household or disposable income.
- Every year, 45,000 people seek financial assistance from the Government to pay for a loved one’s funeral.
Marie Curie, Together for Short Lives, AgeUK and Cruse Bereavement Care are among the charities that contributed to the report. Professional contributors include the chief executive of the National Association of Funeral Directors (NAFD), Mandie Lavin, Paul Allcock of the National Society of Allied and Independent Funeral Directors (SAIF) and representatives from the Institute for Cemetery and Crematorium Management (ICCM).
End of life care
Among the many recommendations made in the paper are suggestions that the rest of the country should take Scotland’s lead on palliative and end of life care. Richard Meade, head of policy and public affairs for Marie Curie in Scotland, points out that Scotland has committed to providing universal access of end of life and palliative care by 2021.
According to the report, as many as one in four terminally ill people in the UK are not accessing the hospice care they need.
Tracey Bleakley, CEO of Hospice UK, reacted to the report’s finding, saying: “With the number of annual deaths expected to increase in the coming decades, we have to act now to address this. When are the changes to policy and funding going to happen so that all of us can get the care and support we need at the end of our lives?”
James Cooper, policy and public affair manager at Together for Short Lives, a charity for children with life-threatening and life-limiting conditions, pointed out that the Scottish Government has promised £30 million over five years for children’s hospices, in line with the funding for adult hospices. But no such commitment has been made in the rest of the UK, he said.
After death and bereavement support
Looking at post-death care, Dr Wendy Walker and Professor Magi Sque of the University of Wolverhampton revealed in the report that the UK has one of the lowest rates of family consent to organ donation in Europe. This means that one in ten people will die before they receive the donor organ they need. The experts say more needs to be done to keep families of potential donors aware of the possibilities and improve rates of donation.
In the report, Alison Penny, coordinator of the Childhood Bereavement Network, tackles the controversial Bereavement Support Payment, which was introduced in April of this year, to much criticism from bereavement charities. She highlights the fact that 88 per cent of working widowed parents will be worse off under the new scheme.
Debbie Kerslake and Stewart Wilson, chief executives of Cruse Bereavement Care and Cruse Bereavement Care Scotland, have called for a UK-wide bereavement strategy in a section of the report which looks at complicated red tape which can leave people waiting weeks to hold a funeral. They suggest that the appointment of a government minister could help improve the way that officials and organisations work together to coordinate paperwork that must be completed after someone dies before the funeral can be held.
The funeral profession
Mandie Lavin, chief executive of the NAFD, has outlined the ways in which the funeral profession is changing and the potential for more regulation in the industry. Looking at changes made in Scotland, she said: “This is an important opportunity to establish shared values and principles for the funeral industry, which will instil and uphold public confidence in the sector.”
In the report, Paul Allcock at SAIF has called for all funeral-related services to be required to register with a recognised trade association, as well as being regularly inspected and providing mandatory appropriate training for staff.
Heather Kennedy, campaigns manager at Fair Funerals, an anti-poverty initiative by Quaker Social Action, has questioned the adequacy of the Social Fund Funeral Payment, saying the Government needs to do more to support low income families after bereavement.
On a similar note, Julie Dunk of the ICCM calls for the Public Health Act to be reevaluated in light of the recent rise in Public Health Funerals, suggesting that one radical solution could be the provision of a state funeral for everyone – with the option to ‘upgrade’ as the family sees fit.
Burials and cremation
Tim Morris, chief executive of the ICCM, has warned of a “crisis of burial across the country”, with space running out in cemeteries. He cites Scotland’s approach to sustainable management of burial grounds as a positive example for central government to follow. Mr Morris suggests exploring the reuse of old, neglected graves – as well as legislation to halt the spiralling cost of burials.
Addressing the provision of cremations across the UK, Brendan Day of the Federation of Burial and Cremation Authorities said that many local authorities running crematoria in England and Wales don’t have the “commercial acumen” to manage them efficiently. He also points to facilities in Scotland as a positive example of how to encourage innovation within the sector.
A catalyst for change
Dr Kate Woodthorpe, of University of Bath’s Centre for Death and Society (CDAS), has called for a more joined-up approach from government policy-makers, local authorities and other organisations in the UK, to ensure care for people who are dying or bereaved is more cohesive and consistent.
“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,” she said.
“Death does not conveniently go away.”
For more information, download the Policy Brief to read the report’s observations and recommendations in full.