Social care support at the end of life - we'd like to hear about your experience

Despite the fact that most people with cancer at the end of life want to be cared for in their own home, we know that all too often people simply don’t get the social care support they need to make this possible. By social care support we mean things like personal care, turning the patient in bed, preparing meals and small tasks around the home. This is because social care is means-tested, which means many people have to pay for this support out of their own pocket. We think it’s unfair to ask people and families to pay for the care and support they need at such a vulnerable time in their lives. And so we’re campaigning to make sure all people affected by cancer can get the support they need at the end of life.

To strengthen our case to Government about the need to make social care free for those at the end of life, we need to tell them about the impact this is having on patients, carers and families. This is how you can help us make things better for others. We really want to hear about your experiences of social care at the end of life:

• Have you or a loved one been through the social care means-test?
• After being means-tested were you (or your loved one) required to pay for social care towards the end of life?
• What impact did this have on you?
• Did you experience delays in the system in accessing social care services?
• What was the impact of this delay?

We know talking about these issues can be incredibly difficult and we would be so thankful for any help you could give us. Personal experiences really do make a difference and can help make things better in the future. If you would like to share your story, please contact us at campaigns@macmillan.org.uk, telling us about your experience using the questions above as a guide.