Changing the conversation - what are your experiences with end of life care?

  • Community Manager - Posts: 120
    12/05/2015  15:12

    At Marie Curie we believe that everyone living with a terminal illness should have access to high quality care and support, which meets all of their needs.

    But we know that the current system fails to deliver this for everyone today and in years to come, as our population ages, it'll face unprecedented demands.   

    You can see some of the challenges below and in depth in our report Changing the Conversation.

    The experiences that many people face are illustrated in the battle that Sara Phelps faced to get her nan Joan the help she needed at the end of her life:

    When my nan was diagnosed with vascular dementia, I knew she wouldn’t want to be in a home. I am the only child of an only child so there was only me. In August 2014, I moved from Surrey to Yorkshire to look after her leaving behind my husband and kids.

    When I first moved in, I contacted social services but was told Nan wasn’t entitled to any care. So as a family, we decided to pay for a private carer. But while the carers tended to be nice they were not experts in dementia care. They just thought she was this sweet old woman and then couldn’t understand why she suddenly swore at them or got really upset and angry.

    So from the August until she went into hospital in November 2014, I was on my own. It felt like I was battling for everything and going round and round in circles dealing with social services. For example, I was given a crisis number as I was having a problem managing my nan’s aggressive behaviour. So I called it but they gave me a different number that then sent me somewhere else. It was very stressful.

    Nan came out of hospital with a discharge care package. She deteriorated quite quickly and the GP advised that she needed end of life care. He made the referrals to the District Nurse and I asked him to make a referral for a Marie Curie Nurse too. It all happened in 12 hours which was really good. A hospital bed was brought around and they got the dose of pain relief right and made sure she wasn’t in any pain.

    I have no complaints about my nan’s care at the end as she was treated like an individual. But there were times before, when she was being looked after in the community, that it felt like she was a social embarrassment and I struggled to get her the care she needed.

    You can read more about Sara Phelps on our blog here.

    If we're going to change this we need to acknowledge that it's an issue that's likely to affect us all and we need everyone to be involved in the conversation about how we as a society approach terminal illness.

    So we want to hear about your experiences with end of life care, good and bad. What helped and what didn't, from diagnosis to the end of life and after.