Susan Lowes: End-of-life care symbolic of how we treat life
We need to tackle low confidence in end-of-life care
Internationally, the UK tops the leaderboard when it comes to palliative care. In Scotland we have a national action plan for palliative and end of life care, we provide palliative care in hospitals, and we have an extensive network of hospices providing specialist palliative care across the country.
So why is it that two out of five Scots over 50 aren’t confident that they will get the care they need towards the end of their life?
In a new YouGov survey commissioned by Marie Curie only 9 per cent of Scots over 50 felt very confident they would get the care they need at the end of life. Nearly two thirds of people over 50 are concerned that busy hospital and care home staff do not have the time to care for people with terminal illnesses.
Palliative care can support people living with a terminal illness. It aims to treat or manage pain and other physical symptoms of a person’s condition as well as addressing any psychological, social or spiritual needs. Our research earlier this year shows that who you are, where you live and what condition you have can have a considerable impact on the type of care you receive.
We need to be able to talk about death, dying and bereavement and encourage more open conversations – between ourselves and in health and social care settings.
In Scotland, 40,000 of the 54,700 people who die each year need palliative care. Yet we estimate that there are nearly 11,000 people in Scotland not getting the care they need at the end of their lives. Bernard was one of these people.
Bernard was diagnosed with end-stage liver disease about six months before he died. Sadly, there was no communication between hospital and community services meaning the care he received wasn’t integrated or seamless. He didn’t get access to palliative care until the day before he died.
We think everyone has the right to palliative care when they need it. Stories show us the importance of communication, timely access to services and emotional support – all things which would have improved Bernard’s care.
We know it is possible for people to feel safe, supported and cared for right up until the end.
The good news in Scotland is that work is under way with the upcoming publication of the Scottish Government’s strategic framework for action on palliative and end of life care. Palliative care will also be the responsibility of newly formed integration joint boards through the merging of health and social care, which will hopefully lead to seamless care for the patient, their family and carers. We need to hold Scottish Government and boards to account to ensure there is real investment and improvement in access and availability. No-one else should be failed as Bernard was during the last few months of his life.
This is why we have asked all current MSPs and MPs in Scotland to pledge support to ensure that palliative care remains a priority and that all their constituents have the right to palliative care when they need it.
We’re also asking political parties to commit in their manifestos for the next Scottish Parliament elections in May 2016 to ensure that everyone who needs this care has access to it.
Your support will be key to ensure that people living with a terminal illness and their families have the best quality of life and support that they deserve.
• Susan Lowes is Marie Curie’s policy and public affairs manager, Scotland. Read about their work at www.mariecurie.org.uk/change