Open Letter to Government Minister

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.

Dear Minister,

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.