Changing the conversation about terminal illness in Wales

by Natasha Wynne Policy and Public Affairs, Wales Over the coming years in Wales, as in the rest of the UK, the number of people living longer and with complex needs is going to increase dramatically. Research suggests that between 22,000 and 26,000 people who die each year will have some palliative care needs. Yet a recent report by the London School of Economics (LSE) estimates that, every year, there are 6,200 people in Wales who do not get the end of life care they need. We don't think that's good enough. We need to start thinking about how we can make some big changes to ensure that everybody living with a terminal illness gets the care they need now and into the future.

Why we need to change the conversation about terminal illness in Wales
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Why people are not getting the care they need

In Wales, people receiving palliative care from specialist teams often rate the care very highly when asked. But we have little information about the many people with a terminal illness who do not access this specialist care. We don’t know if their needs are being met by a non-specialist, such as their GP, or whether they are missing out on the care they need altogether. Without this sort of information on a national scale, it is going to be very difficult to effectively plan services to cope with future increases in need. We also need to identify why people aren’t accessing the palliative care they need. The LSE’s report draws attention to a number of factors which may determine whether someone accesses palliative care, including the condition they are diagnosed with, where they live, their age and their ethnicity. A UK-wide Ipsos MORI survey of health professionals, commissioned by Marie Curie, identified insufficient funding, a lack of coordination between health and social care teams and inadequate time for staff to deliver care as key barriers.

Improving access in Wales

The LSE report demonstrates that providing people with the right care at the right time leads to cost savings and better outcomes. So by changing the conversation about terminal illness there is the potential to make a big difference to the lives of people who need end of life care while making the system that provides that care more efficient. In Wales, the movement towards a prudent healthcare system offers an opportunity to have the necessary important conversations about making sure people with a terminal illness can access the right support. It encourages us to rethink the culture around care so that people approaching the end of their life can become real partners in deciding their care and are not subjected to medical interventions that won’t benefit them. It also helps us to think more creatively about how services are planned and delivered.  The communities we live in and we as individuals can be involved in making sure people are supported to have the best quality of life possible. We must all grab hold of the opportunity to have this conversation. Take a look at our campaign page to see how you can get involved.