Given the critical role that good end of life care can play in improving performance across local health systems, at the beginning of 2017, the End of Life Care Coalition decided to analyse plans to understand whether end of life care was being widely considered.
To access the full analysis, please go here.
Leading UK charities’ issue open letter calling for Government to increase the pace to improve care of dying in England
Charities have expressed concern following the publication of the Government’s “One Year On” report, which marks the first anniversary of its commitment to improve end of life care. In response, the End of Life Care Coalition, made up of six leading charities, has issued an open letter, highlighting the disappointing lack of progress to date, and calling on the new Minister, Jackie Doyle-Price, to keep to the commitment and address the urgent issues facing dying people in England.
The “One Year On” publication marks the first anniversary of the Government’s commitment to improve end of life care, in response to the recommendations of the Independent review of choice in end of life care (the Choice Review) published in 2015. Progress over the last year has been disappointing. We remain deeply concerned about the enduring gap in resources for community-based health and social care services, services essential to supporting patient choice at end of life.
Since the Government committed to improving end of life care, we estimate that 230,000 people have died in hospital – many without the desire to do so or a medical need to be there. This results in countless family members and friends experiencing additional distress and adding unnecessary expense to an already financially strained NHS.
A key recommendation of the Choice Review was that community-based health and social care services needed greater investment to allow more people to have real options to be cared for and die out of hospital. With the number of people in need growing by the day and a lack of investment in community-based care, there is a pressing need to translate the Government’s commitment into tangibly better care and experiences for people at the end of their lives.
We cannot afford to wait any longer to ensure everyone gets the end of life care they deserve. The End of Life Care Coalition would like to meet with you as soon as possible to discuss how to fulfil your Government’s commitment to those at the end of their lives.
Heidi Travis, Chief Executive, Sue Ryder
Dr Jane Collins, Chief Executive, Marie Curie
John McGrath, Chair, Cicely Saunders International
Lynda Thomas, Chief Executive, Macmillan Cancer Support
Sally Light, Chief Executive, MND Association
Tracey Bleakley, Chief Executive, Hospice UK
End of Life Care Coalition
Simon Jones, Director of Policy and Public Affairs, Marie Curie, said:
“This latest update by the Government on their commitment to improving end of life care shows that more needs to be done to give people a better choice at the end of their lives. Last July, the Government laid out a national commitment to help everyone affected by a terminal illness be cared for in their place of choice, however without investing in community care and providing support to a struggling workforce, this cannot be delivered.
“The unfortunate reality of this is that people continue to be failed by a lack of progress, and will be dying in places they don’t want to be, in unnecessary pain, making an already difficult time much worse. Without the appropriate funding, this will continue to be the norm for people at the end of their lives. We urgently need the Government to prioritise end of life care and take their commitment seriously, otherwise we will continue to fail dying people.”
Julie Coombes, 35, whose father Paul died in October 2015, said:
“Dad had originally been in hospital with a bad back and stomach pains when he was told that he had been misdiagnosed and actually had terminal cancer. It was just a five minute chat, if that, and after, nothing. Dad had already been in hospital for two months before he was told, and another month afterwards. He just felt so isolated and alone there with no support at all. He went into depression which I wouldn’t wish on anyone but especially a person having to deal with being terminally ill.
“All we needed was someone to talk to, to explain what was going to happen and what our options were but there was nothing like that. I just got sick of being fobbed off and I think things would have been even worse if I wasn’t there to speak up for my dad.
“All my dad wanted was to die at home where he felt comfortable and could be with the people he loved but it was a real struggle to get him out of the hospital. When dad finally was able to leave, it was down to my mum and me to make all the arrangements, including sorting out a wheelchair and making sure he had a bed for when he couldn’t move.”
About the End of Life Care Coalition
We are campaigning together to call for better quality care and support for those approaching the end of their lives.
Dying is one of the few things that happens to all of us. Scott Sinclair, Marie Curie’s Head of Policy and Public Affairs asks why does it barely get a mention in NHS England’s core strategy?
The Government has published its response to the independent review of choice in end of life care. The End of Life Care Coalition welcomed the response and the National Commitment to improve the care people at the end of their lives receive in and out of hospital.
The End of Life Care Coalition is working to hold the Government into account to deliver on its commitment. Click here to read the government response.
The End of Life Care Coalition is urging the government to adopt the recommendations of the landmark independent review of choice at the end of life, which was published a year ago today. Recommendations in the review include access to 24/7 community nursing and a record of a person’s preferences for care at the end of life.
According to new figures released today by the End of Life Care Coalition’s report On the Brink: The Future of End of Life Care an estimated 48,000 people in England experienced poor care in the last 3 months of their life. This represents 10 per cent of people who died in 2014 and is based on responses from relatives and carers collected by the Office of National Statistics.
The new Coalition report argues that shifting care out of hospitals will be better for people at the end of life and more cost effective but also warns that the right support needs to be in place at home and in other settings to enable this to happen.
Click here for the full press release.
As a coalition of charities committed to improving end of life care, we asked the Chancellor to commit to fully funding improvements in end of life care ahead of the spending review. We did not get this pledge today and that is a missed chance. Urgent investment is needed now to deliver higher quality services and more choice for people at the end of their lives.
Click here for the full press release.
Over the course of the next Parliament, approximately 1.4 million people could die in hospital when their preference was to die at home, according to new figures released by the End of Life care campaign.
Click here for the full press release.
After conducting a full inquiry into end of life care, the influential cross-party Health Select Committee has made a series of powerful recommendations that reinforce our joint campaign. The Committee strongly recommended the introduction of free social care for people at the end of life, 24/7 end of life care for those outside hospital and better care coordination. In addition the committee highlighted the significant gaps in data collection and how this has limited improvement in service delivery, and called for more research into palliative and end of life care. These issues have been at the very heart of our campaign and we are pleased that the Committee has recognised the importance of the need for better end of life care. We now hope all political parties will include free and fast social care for people at the end of life in their forthcoming manifestos, and recognise the critical need for improvements to end of life care.
The independent review of choice in end of life care has published its final report, calling for a new ‘national choice offer in end of life care’ backed up by an additional £130 million from the next spending review. Building on the findings of previous inquiries, the review calls for access to fast and free social care for people at the end of life, 24/7 end of life care for those being cared for outside hospital as well as care co-ordination through care coordinators by 2019. The report can be accessed here, with Health Minister Norman Lamb’s statement here.
The cross-party Health Select Committee in the House of Commons is carrying out an inquiry into end of life care. All members of the campaign provided written evidence to highlight our main concerns and recommendations for reform, with three partners providing oral evidence as well. Find out more