25 June 2014
A new report out today, How could free social care at the end of life work in practice? , written by OPM and commissioned by Macmillan Cancer Support, the Motor Neurone Disease (MND) Association and Sue Ryder, looks at the current state of end of life services in England and provides examples of people being able to access non-means tested social care.
It reveals that in some areas commissioners have been able to find innovative ways of integrating the health and social care systems to improve end of life  care, including STARS Care Liverpool which is highlighted in the report.
Although the Continuing Healthcare Fast Track system is in place across the country, there is a concerning gap between official guidance on its implementation and how it operates in practice. This coupled with a lack of awareness of, and clarity about, the established system is limiting choice for people at the end of life about where they can be cared for.
Social care can provide that much-needed practical support to people at the end of life as well as respite for carers to allow people to remain in their own homes if they so wish.
The coalition, which includes Macmillan Cancer Support, Sue Ryder, MND Association, Help the Hospices, The National Council for Palliative Care and Marie Curie Cancer Care, has been working together to campaign for free social care at the end of life to support people to die in the place of their choosing.
Mike Hobday, Director of Policy and Research at Macmillan Cancer Support, says:
“This report shows that access to free social care at the end of life, which gives people a real say in where they are cared for, is only available in small pockets across the country. We know the majority of cancer patients who are dying in hospital, at great expense to the NHS, want to be able to die in the comfort of their own home surrounded by their loved ones. We want to see more examples of the innovative services highlighted in the report and universal access to free social care at the end of life.”
Mike Smeeton, Director of Health and Social Care at Sue Ryder, says:
“It is encouraging to see new initiatives like Stars which focus on improving the quality of life for people at the end of life through the provision of free social care.
“However, we believe that this practice needs to be more common place throughout the country so that everyone, no matter where they live, can achieve the death that they want.
“Alongside local innovation around end of life care there is an urgent need to improve the way in which continuing health care funding is accessed and how the care is delivered. It is disappointing to see such diversion across the country from the Government’s own guidance.
“When it works well, we know that Continuing Health Care can be transformational in ensuring that people access appropriate and adequate care when they are dying, which affects not only them but also their families and carers.”
Chris James, Director of External Affairs at MND Association, says:
“The Motor Neurone Disease (MND) Association welcomes this timely report. The researchers have highlighted the unacceptable inequity that currently exists across England in dying people’s access to social care that is free at point of use. Innovative models like STARS in Liverpool should be commended and replicated across the country, but this requires a catalyst from decision makers at the top as well as those personally committed to the agenda at the local level.
“It is particularly important that we get end of life care right for people dying with conditions other than cancer. This group is still to benefit fully from end of life care initiatives. The social impact of rapidly progressing, terminal conditions such as MND is devastating on families, and the non-medical needs of people with MND are significant. The Government has sent welcoming signals about the introduction of free social care in recent months and years – this report adds more weight to the argument that the time to make this a reality has arrived.”
The charities are urging health and social care commissioners to adopt the recommendations in the How could free social care at the end of life work in practice? report to better support people at the end of life. These include:
• Improving access to high quality free social care services for people at the end of life.
• Collaborating with local partners to deliver integrated health and social care services.
• Monitoring needs and existing services more closely to inform the development of innovative new services.
The coalition is calling on the Government to make non-means tested, social care available to everyone at the end of life.
For further information, please contact:
Claire Keuls, Senior Media & PR Officer, Macmillan Cancer Support
020 7840 4872 (out of hours 07801 307068),
Janine Mitchell, Regional PR Manager, Sue Ryder
0207 554 5900,
Emma Johns, Communications Manager, MND Association
Notes to Editors
1 OPM (2014), How could free social care at the end of life work in practice?
2 Here being at ‘end of life’ is defined as people who have been issued a DS1500 form or are on an Electronic Palliative Care Coordination system.
About Macmillan Cancer Support
When you have cancer, you don’t just worry about what will happen to your body, you worry about what will happen to your life. Whether it’s concerns about who you can talk to, planning for the extra costs or what to do about work, at Macmillan we understand how a cancer diagnosis can take over everything.
That’s why we’re here. We provide support that helps people take back control of their lives. But right now, we can’t reach everyone who needs us. We need your help to make sure that people affected by cancer get the support they need to face the toughest fight of their life. No one should face cancer alone, and with your support no one will.
To get involved, call 0300 1000 200 today. And please remember, we’re here for you too. If you’d like support, information or just to chat, call us free on 0808 808 00 00 (Monday to Friday, 9am–8pm) or visit macmillan.org.uk
About Sue Ryder
Sue Ryder provides incredible care for people with life-changing illness through its hospices, neurological centres, in the community and in people’s homes. Whether it’s bringing comfort to someone’s final days or enabling them to make the most of their life, Sue Ryder is there to support them and their loved ones. Sue Ryder not only provides specialist medical care to ease pain and discomfort, but also offers people and their families real emotional support that can help with the difficult and often distressing effects of long term illnesses.
About motor neurone disease and the MND Association
• MND is a fatal, rapidly progressive disease that affects the brain and spinal cord.
• It attacks the nerves that control movement; people can still think and feel, but their muscles refuse to work.
• It can leave people locked in a failing body, unable to move, talk, and eventually, breathe.
• It affects people from all communities.
• It kills five people every day in the UK, half within 14 months of diagnosis.
• It affects up to 5,000 adults in the UK at any one time.
• It has no cure.
• Five people die from MND every day in the UK.
For more information see www.mndassociation.org