#10 Advance Care Planning and Learning Disabilities with Sue Marsden

In this episode I talk with Sue Marsden about Advance Care Planning for people with Learning Disabilities. Sue’s shares her experience of working as a specialist nurse in both LD and EoLC and the value this brings to each role. Sue talks about some of the barriers to planning ahead for people living with a Learning Disability and is passionate about educating others to overcome those barriers.

Key messages from Sue

• The importance of recognising that people with Learning Disabilities have so few opportunities to talk about the future but so much more potential to do so than we think.

• There is a smaller window for Advance Care Planning for people with Learning Disabilities as people die on average 20 years earlier, and the discussions will also often take longer.

• The biggest challenge is a feeling of waiting to protect people with a Learning Disability, this can come from both carers and family.

• There are specific communication skills and strategies to support people with a Learning Disability in Advance Care Planning.

• Sue’s success in running a group to discuss Advance Care Planning for People with Learning Disabilities. 

• The “well kept secret” that Advance Care planning is simple about applying What Matters Most conversations to all people.
  

Resource

• Marie Curie Easy Read booklets

• Palliative and end of life care for people with learning disabilities

• Palliative Care for People with a Learning Disability

• Breaking Bad news for People with Learning Disabilities 

• Tools for breaking bad news

Find out more about my Bespoke Consultancy

• Service analysis for teams seeking to improve EoLC or prepare for CQC

• End of Life Care Education

• Lasting Power of Attorney Consultancy

• Talks and presentations

If you’d like to find out more about my work contact me.

What one thing will you do?

It would be great to share what resonated with you from this episode, what is the one thing you will do differently? Head to Twitter, Facebook or LinkedIn to continue these important conversations.

Thanks to all my guests for working with me to share their knowledge, experience and stories about Advance Care Planning. I hope you enjoyed listening and have insights to take away; I love hearing your reflections on the series and look forward to reviews on Spotify where you can also subscribe to the series.

Clare

Important Conversations about Important Conversations.

Podcast edited by Martin Whiskin.