Dying Matters: Last Years of Life Insight Rachael Yearwood, St Joseph’s Hospice Lizzie Stimson, Islington Clinical Commissioning Group

Background to the project A targeted insight project for Last Years of Life (ongoing) A group who met regularly to work with Last Years of Life Steering Group To support the work done with community members who sit on working groups, in a way which was sensitive to Last Years of Life carers and patients.

Last Years of Life Insight Promotion of engagement events: Posters ed to 150 organisations 20 organisations contacted directly – posters / letters distributed Events advertised on GP TV screens and local newsletters – e.g. Carers Hub Delivered three engagement events in Islington during June 2013:  Islington Council – Mon PM  St Luke’s Community Centre – Weds Eve  Age UK Islington – Sat PM Low response – 11 people attended Next Step – Approached group specific groups:  Breathe Easy – Focus group with 17 people Developed partnership with ELIPSE:  One to one telephone interviews – 13 people Total number of people engaged with: Carers – 22 Patients – 19

What people said Information and communication (expectations for patients and carers):  The right information at the right time needed  Poor communication between services and with service user Integrated working:  Seamless service wanted  Services provided felt very disjointed  Services hard to navigate  Keyworker needed for security and continuity of care Immediacy of care:  Services need to be fast and immediately responsive  Problems with accessing out of hours services, weekends, bank holidays Support for carers:  The need to improve the carer’s quality of life  Very little support for carers  Lack of bereavement support

What people said Non-traditional services:  Support accessed from voluntary sector organisations e.g. Age UK  Peer to peer support important  Support from pharmacy – given immediate answers and advice Dignity and Compassion:  Care needs to be sensitive, respectful and empathetic  Knowing a person’s name  A smile Specialist care / Macmillan nurses:  Positive response – knowledge and compassion

What people said Paid carers:  Lack of training and empathy  Lack of consistency GP services:  Relationship with GP was very important  Some good and bad experiences  Problems with GP reception District Nursing:  Inconsistent care  Difficulties contacting service Hospital care:  People wanted care to be compassionate and empathetic  Basic dignity disregarded  Some good experiences

What do people want from services?  Properly trained staff from carer to consultant  Dignity, empathy and compassion throughout their care  Kindness and gentleness  Active listening skills  To be able to remain as independent as possible – including dying at home, staying at home, being supported to use the toilet  Support to care for the person they love  Non-traditional support for both patient and carer which looks outside the medical model  To be listened to and included in their care  To be fully informed and communicated with every step of the way according to each person’s individual preferences  To be given a full understanding of the services on offer and how they can access them  Services which are immediate in responding to need, including out of hours services – and recognise the need for immediate action e.g. less paperwork  Consistent, co-ordinated and joined up services – which would feel like one service, one team, one type of person delivering your care but with multiple skills.

Setting up the Voice for Change group A group for patients and carers that are affected by a life-limiting serious illness to feedback their views to help inform service development and improve current services. How the group developed:  Promoted widely during initial engagement phrase  Developed a list of interested parties  First meeting took place Sept 2013 – 4 people attended  Low responses initially, now offer virtual membership (become a group member by phone)  Now have 14 members to the group – 11 patients, 3 carers Group structure:  Group meets for a couple of hours once a month  Topics discussed decided by group, guided by the insight report and Last Years of Life Strategy  Chaired by project lead (professional)  One month ‘hot topic’ discussion, following month - guest speaker Purpose of the group:  The group feeds into the Last Years of Life Care Strategy for Islington  The chair attends the Last Years of Life steering group (professionals) to feedback the groups views

What difference this project has made?  Feedback from the insight report and Voice for Change group has influenced the Last Years of Life Care Strategy and the Integrated Care Strategy  A District Nursing User Review was conducted as a result of the findings of this project  A directory (hard copy) and a more detailed online directory is being produced for Last Years of Life care services in available to Islington residents  A bid for a Last Years of Life navigator.

Questions? Dying Matters Public Event Wednesday 14 th May 10am to 4pm Islington Town Hall, Upper Street, N1

Questions for the tables?  Have you head of dying matters?  What do you think of Last Years of Life?  What does it mean to people/you?  Has anyone been a carer and what is your experience?  How joined up do you feel the services are between health and social care?  When accessing services do you feel like you know all of the support on offer, including support available through your local pharmacist and community organisations?