1. A good death: we did it his way… Denise Souter

2. Trevor’s Story

3. Contents Trevor’s Story Role of the CTPLD Referral Trevor’s Like and Dislikes Plan of Action Support Network Good Practice which made a difference Challenges and Reflections Questions

4. Role of the community team for people with learning disabilities Multi-disciplinary team specialising in learning disability Assessment of health and social needs Care co-ordination Risk management Staff training Communication and learning disability awareness and promotion Assessment Health management strategies Education Enabling access to primary and secondary services Partnership working

5. Initial referral to CTPLD Referral source: GP Initially requested learning disability nurse involvement Input requested: o Guidance for Trevor’s supported living accommodation o Education and staff training o Guidance around capacity and best interest decisions o Family and access to appropriate support o Liaison with health professionals o Education around the needs of individuals with Learning Disabilities o Providing accessible materials to enhance communication

6. Trevors likes

7. Trevors dislikes

8. Plan of action Reflection on self-knowledge and educational needs Build rapport and liaise with Trevor, family and professionals Start of advanced care planning and risk management Shared consensus and understanding of aims of ‘A good death’ Educate with specialist learning disability knowledge Develop appropriate accessible materials Point of contact and co-ordination

9. Trevor’s support network Family Professionals GP Consultant MacMillan community nurses Kings College Hospital Liaison nurse Hospice staff/ counselling Care management Residential placement Denise Souter

10. The Little things that made a BIG difference

11. Early referral by GP Enabled time to build rapport Liaise with relevant professionals Personal training and education Enabled insight of health challenges Ensure stable network of care Robust care plan and strategy More TIME!!!

12. Pain recognition

13. ‘Pottery’ at St. Catherine’s

14. Towards ‘a good death’? Trevor and family at the centre Keeping mindful of: o Client’s personal preferences o Life goals and interests o Respect for family Maintaining communication networks o Professionals o Clinicians o Family Individually tailored and advanced care planning Providing family support Shared knowledge

15. Reflections Communication Co-ordinating professionals Forming a structure of support Establishing procedures and guidance Consistency of care Multi-professional involvement – sharing information Capacity and Best interests o Awareness o Assessment Practical logistics Emotional resilience Roles and remits Resistance

16. Denise Souter Community Nurse Learning Disabilities Surrey and Borders Partnership Trust Denise.souter@sabp.nhs.uk kssahsn.net