Each year in Scotland nearly 11,000 people who need palliative care are not getting the help they need. Help with pain and symptom management, physical, emotional and spiritual support are essential for anyone affected by a terminal illness.
How and when we receive this support is an issue that will affect us all at some time during our lives, whether it is caring for a loved one or our own care in the future.
In parliament this week MSPs discussed these issues using the findings from Marie Curie’s Changing the Conversation report. It is emotive reading when you realise that we are not all treated equally across Scotland and your personal circumstances influence whether you are offered the care that would greatly benefit you or a loved one. The stark reality is that if you have a terminal diagnosis other than cancer, are over 85, live alone, or are black, Asian or from any other minority ethnic group, then you are likely to face barriers to accessing palliative care. At Marie Curie we don’t think this is good enough.
Many of those that do get the care that they need will only get it in the last few weeks and months of life. Yet palliative care should be given from point of need, which for some people depending on their condition, can be several months and even years before their death.
According to a sample of frontline health and social care professionals interviewed by Ipsos Mori and commissioned by Marie Curie, the reasons for barriers vary. Funding issues, a lack of time to care and poor coordination between different teams delivering the services, such as health and social care, contribute to people’s needs not being met.
To address all these challenges Scotland is going to have to find the resources to care for the current and increasing number of people living with a terminal illness. This care must always be built around choice with people at the centre and it must support families and communities to deliver that care where the person wants it.
Marie Curie has launched new information and support services, including an online community for people to share their experiences and concerns and to talk to other people in similar circumstances, online information and a telephone line to signpost to local support and advice, wherever you live.
We may have started the conversation in Scotland, but we also need to continue to shape the discussion to ensure we see the progress for all people living with a terminal illness. Join the conversation at www.mariecurie.org.uk/change
Richard Meade is head of policy and public affairs at Marie Curie Scotland