End of Life Planning for People with Learning Disabilities In North East Lincolnshire A Beginning , and what we learned
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End of Life Planning for
People with Learning Disabilities In North East Lincolnshire
A Beginning , and what we learned
We Began:
• With invite from EOL Board
• Established Management lead
• Developed an action plan to:
Introduce End of Life Planning for People with Learning
Disabilities In North East Lincolnshire
Action Plan1. Identify & train Learning Disability EOL
Champions across Learning Disability Services
2. Develop an Easy Read Learning Disability EOL Plan
3. Pilot & Evaluate LD EOL Plan with a small group of people
4. Promote EOL Plan to Carers
5. Promote to all LD Service providers
6. Establish pathway to access LD EOL Champion support
7. Develop easy read EOL information for People / Carers / professionals
8. Report progress to EOL Board
ACTION 1: Identify & train EOL LD Champions
Marie Sally Vanessa Linda Annemarie Nicola Lee Barry
Champions should be:
Comfortable with the subject
So they can:
• Offer support and advise to care staff
• Offer one to one support with writing EOL Plan
• Support Palliative Care Teams
Key approach: To promote life – live now – make the most of life
What we decided
Keep if simple easy to read
Bright - engaging Pictures
Brief not too long – demanding
Ensure it is recorded
ACTION 2: Develop an Easy Read LD EOL Plan
3 Work shops called
Me, Others & Life All about me workshop to look at my life story so far, 10 things I want to achieve
Friends, relationships & family: a workshop to look at social opportunities available locally, friends and family in my life.
My Life workshop to look at special occasions - stages in life, growing old, and end of life
ACTION 3: Pilot LD EOL Plan with small group of people to raise awareness & introduce End of Life Planning to people with a leaning disability
Me Others & Life workshops: What we learned
To promote discussion Facilitators (EOL Champion) has to be willing to share personal wishes
Learn together – share life stories
To run 3 workshops with people over 50 requires one to one support / big commitment of:
• Resources / staff time
So ran ½ day workshop
What we learned
ACTION 4: Promote EOL Plan to Carers
People (cared for) are more open than carers
Leave plan around when attending events
Some Carers have used plan for family:
• All planning together
ACTION 5: Promote End of Life Plan to all LD Service Providers
What if Plan can be used for anyone – now being used in our Dementia Services
Good to have local Commissioning involved at Contract level
Develop an introduce EOL One Page Profiles
What we learned
ACTION 6: Establish a Pathway for EOL Support
Lee WebbClinical Nurse Specialist, Community Learning Disability TeamTeL: 01472 571120
CLDT Receive call for support
Call taken (key contact) by Clinical Nurse CLDTDepending on what support needed he decides:
• Which LD EOL Champion to send• If LD EOL Plan written name recorded on
CLDT EOL data base
What we (CLDT) can offer:
Liaise with services
Allocate End of Life - Learning Disability Champion to provide support & advice
Provide information session / workshops for: service Users / staff / Carers
ACTION 7: Develop set of easy read information booklets
Approaching end of your lifeLoosing a family memberGuide for CarersGuide for professionals
ACTION 8: Report progress to EOL Board
Presented to Acute Trust EOL Board
Presented to all Champions across hospital sites
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