Dying Matters: Last Years of Life Insight

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

2. 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.

3. Last Years of Life Insight Promotion of engagement events: • Posters emailed 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

4. 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

5. 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

6. 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

7. 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.

8. 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

9. 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.

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

11. 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?