Everyone should have equal access to palliative care without worries
Discrimination of any form is unacceptable. Whether it's direct or indirect discrimination, people will face issues accessing services, public spaces, employment and many other aspects of life as a result of their background or who they are.
This is sadly also true for people coming to the end of their life. A person’s ethnicity, age, sexual orientation, whether they live alone or not, or their disability can all impact on their chances of accessing the care they need if they become terminally ill. Where a person lives can also have an impact on their chances of accessing that care. Those living in more socially deprived or rural communities, or who are homeless are also much less likely to get the care that they need.
Last September Marie Curie brought together experts to discuss challenging inequities in palliative care across a range of areas including age, deprivation, social isolation, Lesbian, Gay, bisexual, Trans (LGBT) and black, Asian and minority ethnic communities.
The seminar report that was published set out a range of recommendations about how these inequities can be challenged. This included more research so that we can understand the barriers and experiences faced by people living with a terminal illness from different backgrounds. It also called for more training and support for staff working in health and social care settings to provide support and directly engage with communities through better communication and more public health work.
The Scottish Parliament has recognised inequality as an important issue and have been debating the report and its findings. We hope to see wide support from across all the MSPs and from all parties in tackling these issues.
Overall we know that around 11,000 people who die each year in Scotland do not get the care that they need prior to their death. When someone becomes terminally ill they will often need to access palliative care to treat or manage pain and other physical symptoms. It can also help with any psychological, social or spiritual needs. The goal of this care is to help the patient and everyone involved in their care to achieve the best quality of life. People can receive palliative care alongside other treatments, such as chemotherapy or radiotherapy.
Missing out on this care can mean people living with pain, discomfort, and living unsupported. It can result in unnecessary admissions to hospital, and in many cases accident and emergency departments, or can lead to patients staying longer in hospital when fit for discharge.
It also, and possibly most importantly, means that a person may not get to plan how they spend the time they have left.
According to the Scottish Government’s statistics a person living in the most deprived parts of Scotland is likely to spend 26 days of their last six months of life in hospital compared to 24 days for those from the most affluent areas.
This gap has grown over the last five years. Those over 75 are also likely to spend more time in hospital in the last six months of life when compared to younger people in the last six months of life.
LGBT people can often feel apprehensive about using health and social care services, including end of life care, due to having experienced discrimination in the past.
Having a live-in carer is the single most important factor associated with a home death, whereas living alone or being unmarried increases the likelihood of a hospital death.
The Scottish Government has a vision that everyone who needs palliative care should have access to it by 2021. This is ambitious, but very welcome.
However, we now need to make sure that it becomes a reality, and everyone in health and social care from hospitals to GPs, to charities and hospices, as well as social care services and care homes have a role to play in achieving this vision.
Discrimination in care faced by people at the end of life is no more acceptable than in any other aspect of life and more must be done now to end it.
Richard Meade is Marie Curie’s Head of Policy & Public Affairs, Scotland Visit www.mariecurie.org.uk/change