WITH more people than ever living with terminal illness in Scotland, it’s time to pull down the barriers of inequality, writes Richard Meade.
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 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.
People will live longer and with multiple conditions that require highly personalised care
In parliament last night, 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, you are likely to face barriers to accessing palliative care. At Marie Curie we don’t think this is good enough. Many of those who 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 – or even years – before their death. Depending on your condition it may not be a straightforward trajectory and can include moments of crisis and limited recovery. This can even mean you receive palliative care over different short periods rather than continuously.
According to a sample of frontline health and social care professionals interviewed by Ipsos MORI, commissioned by Marie Curie, the reasons for these 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.
Scotland is going to have to find the resources to care for the increasing number of people living with a terminal illness. Inequality will only get worse as the number of people dying is due to rise by 13 per cent over the next 25 years. People will also live longer and with multiple conditions that require highly personalised care.
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. It must be for everyone who needs it, regardless of condition, age, or if a person lives on their own. We also need to make sure professionals get the training and support they need to identify people needing care, and then to deliver that care.
This is why Marie Curie has launched new information and support services: 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 local support and advice, wherever you live.
The Scottish Government has recognised that things need to change and so we have at least begun the conversation in Scotland. Marie Curie is looking forward to engaging in the discussion that will inform the government’s new strategic framework for action on palliative and end of life care, due to be published at the end of this year. The integration of health and social care is also good news for palliative care and cabinet secretary for health, wellbeing and sport, Shona Robison MSP, has said that it would be “an early priority” for the new integrated boards. There is compelling evidence that investing in palliative care will see less pressure on hospital services, easing the reliance on A&E departments and unnecessary use of acute beds. It also saves more money to reinvest, potentially more than £4 million in Scotland, according to estimates from the Personal Social Service Research Unit at the London School of Economics and Political Science, commissioned by Marie Curie.
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.
• Richard Meade is head of policy and public affairs, Scotland, for Marie Curie,