A good death: we did it his way…

Denise Souter

Trevor’s Story

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

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

Initial referral to CTPLD

• Referral source: GP• Initially requested learning disability nurse involvement• Input requested:

o Guidance for Trevor’s supported living accommodationo Education and staff trainingo Guidance around capacity and best interest decisionso Family and access to appropriate supporto Liaison with health professionalso Education around the needs of individuals with Learning

Disabilitieso Providing accessible materials to enhance communication

Trevors likes

Trevors dislikes

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

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

The Little things that

made a BIG difference

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!!!

Pain recognition

‘Pottery’ at St. Catherine’s

Towards ‘a good death’?

• Trevor and family at the centre• Keeping mindful of:

o Client’s personal preferenceso Life goals and interestso Respect for family

• Maintaining communication networkso Professionalso Clinicianso Family

• Individually tailored and advanced care planning• Providing family support• Shared knowledge

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 Awarenesso Assessment

• Practical logistics• Emotional resilience• Roles and remits• Resistance

Denise Souter

Community Nurse Learning Disabilities Surrey and Borders Partnership Trust

Denise.souter@sabp.nhs.uk

kssahsn.net