A manifesto to tackle the crisis facing terminally ill people and their families

by Scott Sinclair Policy and Public Affairs Manager Scott Sinclair, Policy and Public Affairs Manager

For politicians and the people who work with them, the political party conferences are always a highlight of the year. With the General  Election around half a year away, it’s also the last opportunity  we have to convince the political parties to pledge to improve the care and support available to terminally ill people and their families.
This year we have worked closely with six other charities – Cicely Saunders International, Help the Hospices, Macmillan, the Motor Neuron Disease Association, the National Council for Palliative Care and Sue Ryder – to develop a manifesto that represents what the next Government will need to do for terminally ill people and their families. You can read the manifesto in full here  . The five key pledges we are asking of political parties are:

  • To introduce 24/7 advice, care and support for terminally ill people and their families

  • To make social care free for people at the end of life with the most substantial needs

  • To improve co-ordination between services and stop people falling through the gaps

  • To increase the amount of money spent on research that improves care for dying people (just 10p in every £100 is spent on palliative care research)

  • And to improve the data collected from terminally ill people about their experience of care, so that we can use that feedback to offer better care in the future.

Some of these sound quite technical, but we are clear that there is a crisis looming for all of us in the near future. Currently around 50% of people die in hospital. With the number of people dying per year increasing by 17% by the year 2030 and more of us dying with more than just one illness, the number of people dying in hospital – when most of us say that we don’t want to be there – will only rise if we don’t make substantial changes to the way we care for terminally ill people. This matters for all of us, because if we continue to keep terminally ill people who don’t want or need to be in hospital on wards, then that reduces the capacity of the NHS to offer curative and life-saving treatment for everyone.

A lack of quality social care

The real problem at the moment is the absence of good quality social care for many terminally ill people. A lot of people don’t know what social care means, and this is in part due to the fact that the NHS is such a well-recognised and respected brand. We all assume that when we get old and frail, and especially when we get terminally ill, then the right care will be there for us. We think that if we need someone to help us get out of bed, wash us, help us use the toilet when we are terminally ill, then the NHS will provide for us. But that is currently not the case. That type of care – social care – is offered by local authorities and is means-tested, which means if you have sufficient funds to pay for it you are expected to do so. Unfortunately, the means-testing process can often take six weeks or longer. For terminally ill people this means either waiting in hospital while the local authority sorts everything out or struggling to cope at home, either on your own or with family, who are very rarely offered practical support with how to cope with your care needs. We’ve said to political parties that this situation doesn’t make sense. It isn’t right, because everyone who is terminally ill should get the care they need to make the most of the time they have left, and it doesn’t make financial sense because people end up using hospital resources that they don’t want or need.

A massive step forward

We are really pleased to say that the Labour Party has heard our message and pledged to introduce three months of free personal care at home for everyone who is terminally ill. This is a massive step in our campaign and will help us to put pressure on the other political parties. We are determined to make sure that the next Government, whoever that will be, puts the needs of terminally ill people and their families and loved ones high on their agenda.