Insights on Last Years of Life Support and Communication Needs
The project "Dying Matters: Last Years of Life Insight" focuses on enhancing support and communication for patients and carers in their final years. The initiative involves targeted insight projects, promotion of engagement events, and feedback on information, communication, non-traditional services, and healthcare providers. Suggestions include improved information timing, seamless service integration, immediate care responses, enhanced support for carers, and the importance of dignity and empathy in care services.
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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 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
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 14th 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?
