Our campaign to make social care free at the end of life
Macmillan is campaigning to make sure that the freedom to choose where you die becomes a priority for the government.
Everyone should have the right to choose where they die.
Our latest campaigns report, Can we live with how we’re dying? [PDF], outlines new research into the economic case for free social care at the end of life.
We will all be affected by end of life policy and the upcoming General Election is our chance to make sure that cancer care at end of life is at the top of the political agenda.
Macmillan is calling on all political parties to make free social care at the end of life a priority in manifestos so that, together, we can make sure no one faces cancer alone.
What's the issue?
The number of people living with cancer is growing every day. Often, treatment is successful. But for some, this is unfortunately not the case.
The choices you make at the end of your life might be the most important ones you ever have to make. That’s why everyone should be able to get the support and care they need to make the choices that are right for them.
We know that most people with cancer at the end of their life want to spend their last weeks and days at home*, in a familiar place surrounded by loved ones. But right now, only 29% of people are able to do so**.
Why is free social care important?
Social care support includes assistance with things like preparing meals and washing or helping someone in and out of bed. This everyday but essential assistance allows people at end of life to die in the place of their choosing. And yet it’s not easily available to everyone. The process for requesting social care can be extremely complex and time-consuming, often with lengthy waiting times or delays. For someone who is dying, these delays are just not practical or reasonable.
If we could guarantee access to free social care, many people would have the support they needed to die in the place of their choosing. It’s the freedom to make this choice at end of life that Macmillan is campaigning for.
Where are we now?
The government in England says it sees 'much merit' in making social care free for everybody at the end of their life. Over the summer of 2012 they offered the chance to feed back on proposals made in the Care and Support White Paper and the draft Care and Support Bill.
More than 7,800 of you backed our response to this by signing our open letter calling for the government to make sure free social care at the end of life remains a priority as it takes forward plans to reform the social care system. You can read our consultation response here [PDF].
An influential committee of MPs and peers published a report on the draft Care and Support Bill in March 2013. It backed the important role social care plays in giving people a choice over where they are cared for and where they die. The committee stated that free social care at the end of life should be introduced 'at the earliest opportunity'. As the Bill progressed through parliament, the Care Minister Norman Lamb went one step further saying he was determined to see free social care at the end of life a reality.
The upcoming General Election in May 2015 presents us with a vital opportunity to secure ongoing political commitment from all parties, so that people who are dying can receive the support they need to make the choices that are so important to them.
For a succinct summary of the campaign that you can share with friends, MPs or anyone else with an interest in free social care at the end of life, please download our briefing here [PDF].
How you can help
You can help us make the case for change. If a loved one struggled to get the social care support they needed to give them choice at the end of life, then your story could help strengthen our campaign. If you’d be willing to share your experiences then contact us at firstname.lastname@example.org.
Philip Gould - When I Die
As former political strategist Philip Gould was dying of oesophageal cancer in Autumn 2011, he shared his thoughts and emotions through video.
*Office for National Statistics. Additional analysis from the National Bereavement Survey (VOICES) 2011. Place of death based on death certificates. Where cause of death was cancer, 59% of bereaved relatives responding to the survey stated that the deceased had named a preferred place of death. Of those who expressed a preference and died in hospital, 65% had wanted to die at home, 11% had wanted to die in a hospice, 15% had wanted to die somewhere else, and 9% had wanted to die in hospital.
** Office for National Statistics. Mortality statistics, deaths registered in 2011 in England.