Joint CEO letter and manifesto calls for radical change to palliative and end of life care. “People who are dying, and their loved ones, deserve better”
Chief executives of the UK’s palliative and end of life care charities have united during Dying Matters Awareness Week to urge party leaders to prioritise palliative and end of life care in their election manifestos and plans for government.
In the letter, chief executives from Hospice UK, Marie Curie, National Bereavement Alliance, Sue Ryder, and Together for Short Lives say:
“if you do nothing to fix the problems that dying people currently experience, hundreds of thousands will miss out on vital care and the trauma of seeing a loved one die without support will live in the minds of a generation. People who are dying, and their loved ones, deserve better.”
Up to 90% of adults who die would benefit from palliative and end of life care. And due to the UK’s ageing population, around 32,000 more people would benefit from palliative care at the end of the next parliament (2029), compared to the start (2024).
Matthew Reed, the chief executive of the end of life charity, Marie Curie, says:
“Dying people do not have time to wait, the next government must prioritise fully funding end of life care. Too many people are dying in avoidable pain, frightened and without the dignity they deserve. Families are left stressed, exhausted and traumatised.
“Death and dying is inevitable but getting it wrong at the end isn’t. If the next government fails to address the chaotic approach to end of life care, that failure will affect us all.”
Toby Porter, CEO of Hospice UK, says:
“The next few years are critical for end of life care. We know that many people do not get the palliative care they need at the end of their lives, and we know that our ageing population means demand for care will continue to grow over the next decades.
Hospices are ready to meet this challenge, but they need a new funding model and support from the next government to ensure they can continue to provide their brilliant care for everyone who needs it, whenever they need it.
“We need the next Prime Minister to recognise the importance of palliative care and heed the recommendations of the joint manifesto, so everyone affected by dying, death and bereavement gets the best possible care and support.”
Children and young people in just a third of local NHS areas in England can access end of life care at home that meets National Institute for Health and Care Excellence (NICE) standards.
Andy Fletcher, Chief Executive of Together for Short Lives, says:
“It is unacceptable that families of seriously ill children are not getting the palliative and end of life care they need because of where they live. This is care that is clearly set out in standards, guidance and even the law.
Time is short for seriously ill children and their families. It is vital that the next government oversees a step change so that children and families can finally access the high quality, sustainable palliative care they need.”
The letter also highlights the charities’ joint manifesto, which is calling for radical change to palliative and end of life care, and improved support for carers and bereaved people.
Heidi Travis, Chief Executive of Sue Ryder, says:
“It is clear no more time can be wasted; the government and healthcare system must act now.
“Our research shows that the demand for specialist palliative care services is expected to rise by 55% over the next decade. The constant uncertainty of funding will continue to be a threat to service provision until a sustainable solution is reached.
“Everyone should have a good death, and access to palliative and end-of-life care is integral to this. The inconsistent provision across the UK continues to make this time more difficult for people at the end of life, when their focus should be spending time with people they love and making memories.”
Every year, Dying Matters Awareness Week encourages people to talk about death, dying and bereavement.
Full letter to party leaders:
May 2024
Dear Party Leaders,
Re. A manifesto for palliative and end of life care
We are writing to you in Dying Matters Awareness Week to ask you to commit to ensuring everyone receives the best possible care and support at the end of life, and through bereavement, in your party’s general election manifesto. Whether or not people of all ages can die with dignity, are able to access the care and support they need, and can be confident that their loved ones will be helped through their grief, is a significant marker of a civilised society.
Across the United Kingdom today, far too many families’ experiences of end of life are irredeemably traumatic. Because of unmet palliative care and end of life support needs, people are dying in pain, in poverty and alone; their carers and families don’t know where to turn for help; and many bereaved people struggle to find practical and emotional support.
That is why we are writing this joint letter – to ask you, ahead of the General Election, to recognise palliative and end of life care as a vital part of our health and social care systems. We call on you to commit in your plans for government to making the reforms necessary to ensure that everyone receives the best possible care and support at the end of life and through bereavement.
The imperative for making these changes is practical as well as moral. The demand for palliative and end of life care is rising fast as our adult population ages and more children, young people and adults live longer with multiple complex health conditions.
Up to 90% of adults who die would benefit from palliative and end of life care and we know that many already miss out on the care and support they need. Furthermore, due to the UK’s ageing population, around 32,000 more people would benefit from palliative care at the end of the next parliament (2029), compared to the start (2024).
If you do nothing to fix the problems that dying people currently experience, hundreds of thousands will miss out on vital care and the trauma of seeing a loved one die without support will live in the minds of a generation. People who are dying, and their loved ones, deserve better.
In our joint manifesto for palliative and end of life care, we have identified five key policy priorities for you to include in your party’s election manifesto:
1. A new funding solution for hospices and palliative and end of life care – to end the postcode lottery in access, reduce reliance on charitable donations, and ensure services are fit for the future
2. A national palliative and end of life care delivery plan in every nation – to ensure 24/7 access to care, commissioning that meet the needs of our population and a health and a care workforce that can respond to future need
3. A guarantee that palliative and end of life care services meet each individual’s needs – with personalised care and support planning for everyone and the sharing of plans to ensure joined up support
4. End poverty among people at the end of life and tackle inequalities in palliative and end of life care – including by ensuring those of working age can claim their state pension and other pension age benefits and delivering a cross-government strategy to address health inequalities
5. Improving support for families and carers of people living with a terminal illness – including by better identification, needs assessments, financial and bereavement support for carers and extending statutory bereavement leave and pay to more bereaved people
We would urge you to set out your commitments to the electorate by reflecting deeply on how we can improve experiences of dying and bereavement, because every one of us will face these experiences in our lives.
Yours sincerely,
Toby Porter, CEO, Hospice UK
Matthew Reed, CEO, Marie Curie
Andy Fletcher, CEO, Together for Short Lives
Heidi Travis, CEO, Sue Ryder
Alison Penny, Coordinator, National Bereavement Alliance
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About Marie Curie
Marie Curie is the UK’s leading end of life charity. The charity provides expert end of life care for people with any illness they are likely to die from, and support for their family and friends, in our hospices and where they live. It is the largest charity funder of palliative and end of life care research in the UK, and campaigns to ensure everyone has a good end of life experience. Whatever the illness, we’re with you to the end.
If you’re living with a terminal illness or have been affected by dying, death and bereavement, Marie Curie can help. Visit mariecurie.org.uk or call the free Marie Curie Support Line on 0800 090 2309.
About Hospice UK
Hospice UK is the national charity for hospice and end of life care. We support the UK’s 200+ independent hospices and work to ensure everyone affected by death, dying and bereavement gets the care and support they need, when they need it.
Find out more at www.hospiceuk.org
About Together for Short Lives
Together for Short Lives is the UK’s children’s palliative care charity. Our purpose is to ensure every child with a life limiting or life-threatening condition has access to the best care and support, when and where they need it. We campaign for change, raise vital funds to fill the funding gap across healthcare systems and help families directly through our Family Support Hub so they can spend every moment making memories.
About Sue Ryder:
At Sue Ryder, we can’t make life’s most difficult moments easy, but we can carry some of the load. For more than 70 years, we have been a source of strength and support for anyone living with a life-limiting illness or grief.
Dying and grief are universal experiences, but too many people face them alone. We are a safe and reassuring hand you can reach for. From providing care and support for someone at the end of their life to helping someone manage their grief, we know there is no one size fits all when it comes to how we cope and the help we need. We campaign for everyone who is approaching the end of their life or grieving to have access to the right support, at the right time. And we seek to break down the barriers to talking about dying and grief – so we can all be better prepared and better equipped to be there for each other
About The National Bereavement Alliance (NBA)
The National Bereavement Alliance (NBA) is a group of national, regional and local organisations with a shared vision that all people have awareness of and access to support and services through their bereavement experience.
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