Provision gap causing poor care for the dying outside of working hours

People who are dying miss out on comprehensive round the clock care services, often being left without professional help outside of normal ‘9 to 5’ working hours.

National health and social care charity Sue Ryder has discovered 92 per cent of areas in England lack comprehensive services for the dying, their carers and their families, causing distress and suffering for those being left alone for long periods of time.

Sue Ryder has launched the campaign Dying Doesn’t Work 9 to 5 to draw attention to the lack of expert services which the charity believes is preventing people from experiencing their right to have a good and dignified death.

Heidi Travis chief executive of Sue Ryder, said: “Sue Ryder firmly believe that people who are dying, their carers and their families should be able to access the care they want, when they want. Unfortunately many areas of the country simply don’t have the services in place to make this ambition a reality. Yet services like our local Partnership for Excellence in Palliative Support (PEPS), which is built around giving patients a single point of contact to help ensure a coordinated service, has proven that this 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, no matter what time of day it is. We’re asking people to visit our website and sign our petition to ensure the next government makes improving end of life support services a priority.”

In a recent survey it was revealed over 80 per cent of the population expect 24 hour support to be available for those who are dying and think the issue should be prioritised by political leaders.

Carer Victoria Wolfe-Brown described providing full time care for both her mother and father as a ‘terrifying experience’ and is backing the campaign calling for more to be done to support end of life care.

She said: “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 – In a course of a four day period there were forty care professionals in the house trying to help 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.” The charity has called for an increased range of services for people at the end life to ensure more can die in their place of choice having received coordinated care.

With the number of deaths is expected to rise by 17 per cent by 2030, the charity has said the need for care is only set to increase. Sue Ryder provides care, advice, education and support to people with conditions such as dementia, Parkinson’s disease and Huntington’s disease and operates seven hospices throughout the UK.

To sign the charity’s e-petition visit: www.sueryder.org/not9to5