- Only 8 of CCGs in England currently commission comprehensive 24/7 support services for the dying, their carers and families
Sue Ryder, the national health and social care charity providing compassionate hospice and neurological care across the UK, is today launching ‘Dying Doesn’t Work 9 to 5’, a new campaign to draw attention to the national lack of comprehensive 24/7 end of life expert support services. Researched released by the charity reveals that only 8% of CCGs in England currently commission a comprehensive package of 24/7 advice, support and coordinated care for those who are dying and their loved ones.
Sue Ryder believes the current gap in services is unacceptable as it challenges people’s right to have a good and dignified death. An increase in the range of services commissioned for people at the end of life will help to ensure more people are able to die in their place of choice, surrounded by their loved ones and in receipt of expert and coordinated care. Crucially, it also alleviates pressure on other parts of the health and care system such as GP surgeries and hospitals.
Mike Smeeton, Director of Health and Social Care at Sue Ryder, says: “Sue Ryder firmly believes that people who are dying, their carers and their families should be able to access the care they want, when they want – no matter where they live. Unfortunately, many areas of the country simply do not have the comprehensive services in place that they need and deserve and are suffering as a result. Yet services like our local Partnership for Excellence in Palliative Support (PEPS) based in Bedfordshire, which is built around giving patients a single point of contact, has proven that a coordinated and comprehensive service is possible to achieve.
Today sees the launch of our ‘Dying Doesn’t Work 9 to 5’ campaign, which seeks to draw attention to the needless suffering that people at the end of life and their carers are experiencing and the urgent need for comprehensive support and advice services to be commissioned by all CCGs, to ensure people in need have access to the right support no matter where they live and no matter what time of day it is. We’re asking all healthcare professionals to support our campaign call by raising awareness of the issue locally. By visiting our website you can check whether your local CCG is one of the 8% who currently commissions the comprehensive and expert end of life support services we are calling for and if it isn’t, make a stand with us today.”
With the number of deaths in the UK expected to rise by 17% by 2030[i] and hospitals already struggling to cope with the demand, the shortfall in end of life care services is only set to increase. Furthermore, new research commissioned to support the campaign shows that the population is unaware of the gaps in services and expects NHS general practitioners, doctors and other NHS professionals to provide round the clock support services. They overwhelmingly support Sue Ryder’s call for politicians and decision makers to prioritise access to 24/7 expert support and advice:
- 82% expect that support and advice should be available 24 hours a day for those who are dying
- 84% feel it is important for political leaders to prioritise the issue of providing 24/7 support for people who are dying, their carers and families
- 85% expect there to be coordination across all services including information on other services they may need[ii]
Victoria Wolfe-Brown describes how important round the clock expert support and advice was to her when she found herself in the position of having to care for both her parents, full time and her experience helps to illustrate why 24/7 support services are so essential:
“Night time was a particularly difficult time for us as my father had breathing difficulties which caused him to have panic attacks. At times services were available to help me but they were uncoordinated and somewhat chaotic – at one point there were forty care workers in the house at the same time but not one knew anything about my father’s condition.
On another occasion, we were stranded as the usual service we got help from was closed on a bank holiday – my father’s condition was going rapidly downhill – it was quite a terrifying experience.”
For more information on Sue Ryder’s campaign calling on the next Government to prioritise comprehensive 24/7 expert support services for those who are dying and their loved ones, visit: www.sueryder.org/not9to5. Use #not9to5 on Twitter to join in the conversation.