LeDeR Confirm & Challenge Groups

Across the North East and Cumbria there are a number of experts with lived experience who are integral to the delivery of the LeDeR programme.

Cumbria Confirm and Challenge

The Cumbria Confirm and Challenge group ensures people with a learning disability and autistic people are supported to come together and have a real opportunity to influence the North East and North Cumbria LeDeR work.
Since 2019, the group has drawn upon the valuable lived experience of parents and carers, together with professionals from social work, learning disability nursing and hospice care.
The group are passionate about making sure that learning happens from the lives and deaths of people with a learning disability and autistic people, so that:
• Health inequalities can be reduced to help people live longer, healthier lives
• People’s choices in the care they receive during their life and death are respected
To make sure this happens, the Cumbria Confirm and Challenge Group read reviews of deaths so that they can:
• highlight examples of good care (Confirm)
• identify aspects of care that needed to be improved (Challenge).
Feedback from the Cumbria Confirm and Challenge Group forms an integral part of the North East and North Cumbria LeDeR Review Panel and Learning into Action meetings.

The group also focuses on creative ways to raise awareness of the LeDeR work programme and support ways to put the learning into action.

They have recently produced a short animation to explain the LeDeR process. You can watch it here.

As part of their work with Eden Valley Hospice, the group have also contributed to the development and design of a ‘Death, Dying and Bereavement’ resource pack for Learning Disability Providers.

You can read more about our work here

Stop People Dying Too Young Group

The Stop People Dying Too Young (SPDTY) Group are a Confirm and Challenge Group for the LeDeR Programme. Our group is made up of 10 self-advocates and family carers, who have been working together for over 7 years. Our group members have lived experience of autism and learning disability.

We work passionately to address health inequalities and prevent people with a learning disability and autistic people from dying too young.
We do this by:
• Asking questions about why people with a learning disability and autistic people are at risk of dying much younger than other people.
• Creating campaigns, talking about inequality, and raising awareness.
• Supporting the work of the North East and Cumbria LeDer Programme.
• Reviewing the LeDeR reports of people who have died and giving our feedback about the care and support they received.
• Attending LeDeR meetings to share our lived-experience and be an integral part of the LeDeR programme.

The SPDTY group is facilitated by Inclusion North, a Community Interest Company that exists to make inclusion a reality for all people with a learning disability, autistic people and their families.

You can read more about our work here