A better deal for people living with any terminal illness
by Scott Sinclair Policy and Public Affairs Manager, England
In its recent report on Equity in the Provision of Palliative Care in the UK, the London School of Economics and Political Science (LSE) found that people who are terminally ill with a cancer diagnosis are more likely than those with a non-cancer diagnosis of gaining access to the specialist care and support that they at the end of life. We already knew that this inequity in access to care existed when we commissioned the LSE to undertake their research. But the scale of inequity is surprising. To put it into perspective, in 2012-13 88% of palliative care inpatients were people with a diagnosis of terminal cancer even though cancer accounts for around only 29% of deaths. And in three London primary care trust areas, people with terminal cancer had an average of 11.4 GP visits in their last three months of life compared to 3.9 visits for people with terminal conditions other than cancer. We also know from the LSE’s new analysis of the National Survey of Bereaved People data in England that people who have terminal cancer are more likely to experience outstanding or excellent care and more likely to have better relief of their pain. The reasons for this inequity are complex. Palliative care was originally developed specifically as a response to the needs of people with terminal cancer and this does mean a lack of condition-specific expertise prevents people with a non-cancer diagnosis getting the care and support they need. It’s also often harder to predict when people with terminal conditions other than cancer are in the final stage of life. We should avoid, though, concluding that people with a diagnosis of cancer are better off. The LSE showed that around 110,000 people in the UK are missing out on getting palliative care each year – both people with cancer and non-cancer diagnoses – and that this is set to increase. Around half of us still die in hospital despite less than 5% of people saying that is where they want to be. The truth is that many people with cancer do have difficulty accessing care and have a poor experience when they get support. It’s just that people with non-cancer diagnoses have even less likelihood of getting the care they need to live well for as long as possible. Much more must now be done to ensure that everyone affected by terminal illness has access to care and support, regardless of their diagnosis or their personal circumstances. This is a challenge for everyone involved in commissioning, planning, and providing for care across the whole of the UK and if it isn’t addressed now it will only get worse. We would love to hear your thoughts on these issues. Take a look at our campaign page to see how you can get involved in helping Marie Curie provide a better life for people and their families living with a terminal illness - whatever that illness is.