We’ve joined forces with Hospice UK, National Bereavement Alliance, Sue Ryder and Together for Short Lives to deliver our shared manifesto for palliative and end of life care .
Here’s what we’re calling on the next Government to do.
1. Deliver a new funding solution for hospices and palliative and end of life care to end the postcode lottery in access.
The demand for palliative and end of life care is rising rapidly as our population ages. It’s expected that by 2033, around 660,000 people will die with palliative care needs every year in the UK.
Without improved funding, the NHS and hospice charities will be unable to meet this growing need and address the gaps that already exist in end of life care across the UK.
That’s why we’re calling for a new funding solution, so that the NHS, Marie Curie and other providers can commission more services and hire enough trained staff to provide care for everyone who needs it. As part of this, we want to see fair pay for everyone providing care and support for people at the end of life.
2. Introduce a national delivery plan for palliative and end of life care in every nation to support delivery of local services.
Right now, too many people are missing out on vital support because the right service isn’t available in their area. This needs to change.
The next Government should ensure the right services are commissioned in every local community, and that the right health and care workforce is in place to deliver them.
We’re calling for better local access to palliative medicines and for a designated phone line to be available in every local area, so people with palliative and end of life care needs and their carers can get 24/7 advice, guidance and support.
3. Guarantee that palliative and end of life care services meet each individual’s needs, including those of people dying at home.
We’re all unique, and a good experience at the end of life means that what matters most to you is at the heart of your care.
My dad wanted to be cared for at home, to be pain free, and have dignity. I was told the GP will contact district nurses, who would then contact palliative care. But that never happened. It’s a terrible tragedy that the last two weeks of his life were the way that they were.
The next Government needs to ensure personalised care and support planning for everyone approaching the end of life, and ensure those plans are shared across health and care services. This will help people with an illness they’re likely to die from and those closest to them receive joined up support.
People with direct experience of dying, death and bereavement also need to be involved in the design of local health and care services to ensure their needs are met.
4. Act to ensure that nobody dies in poverty and tackle inequalities in palliative and end of life care.
Over 90,000 people die in poverty every year in the UK. From lost income to rising expenses, many at the end of life struggle to make ends meet and the benefits system isn’t providing the safety net it should.
We’d always needed the heating on for Eddie. I didn’t have enough money to pay all the bills, so I had to declare myself bankrupt.
We’re calling for better financial support for people living with terminal illnesses, including early access to their State Pension, and targeted help with costly energy bills.
Groups that are disadvantaged in earlier life are also the most likely to die without the end of life care they need. You’re more likely to miss out on vital care if you’re from a racialised, minoritised ethnic group, LGBTQ+, or have a learning disability, for example.
The next government needs to tackle these health inequalities. Our health and care system must be able to meet the needs of all communities so that everyone receives the right care and support throughout their life, including when they die.
5. Improve support for families and carers of people with a terminal illness.
Families and friends are rarely prepared for the emotional, physical and financial challenges of caring for someone diagnosed with a terminal illness, and the support available to them often falls short of what’s needed.
The next Government needs to make sure carers of people at the end of life are properly identified and receive sufficient financial and bereavement support.
When my dad died, my employer failed to offer basic support or compassion. I shouldn’t have to cry for someone to offer help.
They must also put a cross-government bereavement plan in place and extend statutory bereavement leave and pay, to help people navigate the difficult time after a loved one dies.
You can read more about the changes we’re calling for in our joint manifesto for palliative and end of life care .
This blog is published on the Marie Curie website.
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