THE BLOG

End Of Life Care - Charities Are Filling Government Gaps

05/12/2016 08:10 GMT | Updated 03/12/2017 10:12 GMT
Shutterstock / kazoka

While acknowledging the whole of the NHS is currently under pressure, for people who are dying the risk of not getting the care they need to manage their symptoms and maintain a good quality of life is worryingly high.

Today, 1 in 4 people are not getting the palliative care - that is care to manage pain and other symptoms alongside psychological, social and spiritual support - that they need. The people who miss out most frequently are those with non-cancer diagnoses and those over the age of 85, despite the fact that more people are dying at older ages and that dementia, not cancer, is the single biggest killer.

Not having palliative care when you need it has real and damaging consequences. It means people dying in pain or discomfort, which causes emotional distress not just for the person dying, but also their family, friends and loved ones. Yet this is avoidable. With access to good palliative care, people can have pain and other symptoms managed, be comfortable, with their loved ones, and, where appropriate, die in their own home or care home.

What a lot of people may not realise is that the vast majority of palliative care outside of hospital is provided by the charitable sector - organisations like Marie Curie, whose nurses provide overnight care in people's own homes - and is only partly funded by the NHS. And people who donate their money, and also their time, by volunteering with end of life care charities play a huge role in ensuring that the majority of us will get the right care when we are dying.

That is why I have called a debate today, on International Volunteer's Day, to not only highlight the existing services available to people affected by terminal illness and the challenges facing those services, but also to highlight that without the generosity of supporters and volunteers, many of these services would not exist.

I was reminded of the valued contribution of the charity sector and its volunteers to end of life care when I recently met with a local Marie Curie Helper volunteer, who was providing incredible support and companionship to a constituent affected by a terminal illness.

They were both movingly positive about the effects of this volunteering and highlighted that without it, many people with a terminal illness and their families would suffer in silence. They talked passionately about their local hospice being a place where they could both feel comfortable and could have their needs met in a place that wasn't negative about death and dying, but treated it as part of life and deserving of the same care and support than at any other time of a person's life.

And, with demands increasing on end of life care, the work of local hospices is incredibly important. As I saw firsthand during a recent visit to Marie Curie's Newcastle Hospice, the work done by hospice staff can cover anything from providing out of hours specialised care to a patient with multiple complex needs, to making sure a patient can be surrounded by their loved ones at this incredibly challenging time. Hospices can often also provide support through bereavement and preparing the family for a loss, which can take a huge pressure off, particularly when it is a young person experiencing the loss.

But of course even with the contribution of the voluntary sector, we still are not meeting the demand for palliative care, and that demand is rising. The number of deaths per year will rise by 100,000 over the next five years, but already it's not unusual to hear about someone dying in hospital after weeks of waiting for a social care package so they can get home. There is a desperate need to build the capacity palliative care and social care services to meet this demand.

But this can only be done with more funding. The Government declined recently to spend as little as £130m on improving access to care in the community for people affected by terminal illness, even though these types of services have been shown to reduce people's reliance on hospitals and save money for the NHS. It really is vital that the Government invests now to meet the demand that is coming, and this is true across the whole NHS and the social care system. There is a desperate need to deliver services more efficiently, closer to people's own homes. But this can only be done by investing in change now, to avoid crisis spending in future years.

Without any additional funding for end of life care, charities and their much needed volunteers will face unprecedented demands on their time and resources. More need to be done to acknowledge the role of the sector, and of the thousands of people who give up their time to support others at what can only be the most vulnerable time in their lives.