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

For further information

www.sayingitall.com