As members of the Cumbria Confirm and Challenge Group, we are passionate about making sure people with a learning disability and autistic people live long and healthy lives.
We want to raise awareness about the LeDeR Programme. It is at the centre of the work we do and shows the importance of speaking up for the rights of people with a learning disability and autistic people.
LeDeR(learning from lives and deaths) is an NHS improvement programme, developed to learn from the lives and deaths of people with a learning disability and autistic people. For us, we want to make sure the life of every person makes a difference. People are still dying far too early and sometimes the deaths are preventable. We want to speak up to change that.
We speak up at LeDer review panel meetings filled with professionals to make sure the voice of people with lived experience is heard and valued. We speak up to ‘confirm’ good examples of care, and we speak up to ‘challenge’ care which could and should have been better.
We want people to have better health and better care, so we’re determined to continue speaking up and learning from each person’s life and their death. If more deaths are reported to LeDeR, more learning can take place. It’s that simple.
But, do you know how to report a death to LeDeR?
Our group were concerned that people involved in the lives of people with a learning disability and autistic people were not aware of LeDeR.
Group members, Elizabeth and Lou are both committed to advocating for better healthcare and raising awareness about LeDeR.
Elizabeth said, “It’s important that everyone knows what it’s about.” Lou agreed, adding, “If someone dies and it could have been prevented, well that should be everybody’s business.”
To address this, the group co-produced a short video with Eden Valley Hospice, explaining what LeDeR is. Despite the challenging topic, the group enjoyed being involved in everything from script writing, choosing colours and images and even recording the voiceover.
Lou summed up the feelings of group members: “I feel like the whole Confirm and Challenge group got to put our own stamp on it and I hope everyone watches and listens to the video. It shows we’re wanting to make a difference, to make sure that everyone understands that people with a learning disability and autistic people need to have better care. We want people to know that we’re involved in the LeDeR review process and will speak up for people when they can’t. This is advocacy.”
You can watch the video below: