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Caring for the Carers - working in partnership to achieve person centred care Anne Marie Tunney

Caring for the Carers - working in partnership to achieve person centred care Anne Marie Tunney. The Partnership Approach. The carers. NHSCT. Stroke Specialist Nurse (Patricia) Carer’s Co ordinator (Ann) Ward Manager (Siobhan). Personal experience. Stroke Survivor. FONS & Burdett

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Caring for the Carers - working in partnership to achieve person centred care Anne Marie Tunney

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  1. Caring for the Carers - working in partnership toachieve person centred careAnne Marie Tunney

  2. The Partnership Approach The carers NHSCT Stroke Specialist Nurse (Patricia) Carer’s Co ordinator (Ann) Ward Manager (Siobhan) Personal experience Stroke Survivor FONS & Burdett Trust for Nursing Funding NICHSA UU Practice Development Nurse (Anne Marie) Stroke Co ordinator (Shelagh)

  3. Where did the idea come from? “There is plenty of help available for those who have had a stroke but little available for carers”. (Carer of a stroke survivor)

  4. Establish need Expertise Carers support group Support Function Funding Next steps…………………

  5. 1 2 3 • Establish need • Questionnaire • Research • NICHSA • Funding and expertise • FONS – “Patients First Programme” • £3000 • Services of facilitator • Workshops (London) • Practice Development Nurse • Stroke Specialist Nurse • Support • Steering Group • Working Group Next steps……

  6. The research...... Benefits of a support group Chou, Lui & Chou, 2002 Cook & Laris, 2000

  7. Causeway Stroke Carers Group

  8. Values Clarification Exercise – The Vision The purpose of the Causeway Carers Support Group is to meet togetherwith people in a similar position and to supportand receive support and learnfrom each other. This will help us to copeby relieving tension, having fun and giving us ‘me time’.New friendships will be formed through chatting and interaction and advice and shared information from visiting speakers will help us to grow together.

  9. Educational Various speakers Time to ask questions Discussion PR Quarterly Newsletter Editorial board – group Up to date info/recipes Local radio Advertising group Posters and leaflets Public areas Social interaction Support Companionship Sharing of ideas Sharing of experiences Learning from each other Function of the group

  10. Educational Social Discussion • Carers (NI) – Benefit awareness for carers • Health checks – NICHSA • Communicating with stroke survivor – SALT • Stroke awareness week • Reflexology session • Shopping trips • Visit to Garden centre • Scone baking • Ward Manager – action planning • Carers wishlist • Experience based questionnaire and listening lab The activities…………………..

  11. Stroke Awareness Week

  12. CARER’S WISHLIST “I wish I could have my life back the way it was before the stroke” “Sometimes that my sister could be more mobile – it’s hard to see her getting weaker” “We had planned a trip to Canada and I wish we could go” “More support and information in the early days” “I wish I had more help to ease my burden and have a few hours to myself” “As an only child I wish I had more family members to help if needed” “I wish I had space to myself” “A little free time to relax… someone to speak to when feeling down…” “I wish I could be wife, mother and friend today instead of carer” The Carer Wish List…………… “I would like 5 hrs- 1 day a week to myself” “I wish I had time to play with my son” “I wish I was not so angry”

  13. Experience Based Design Exercise NHS Institute for Innovation and Improvement (2009) Opportunity for carers to share experiences and explore how improvements could be made - Uses patient and staff experiences to design and improve health care - Four key aspects - Capturing the experience – tell the story Understand the experience – from a different perspective Improve the experience Measuring the improvement Various tools Experience based questionnaire Listening Lab

  14. Experience questionnaire

  15. Listening Lab Taped – written consent Thematic content analysis

  16. Themes identified……………… A sense of loneliness – “I was just on my own” Lack of information provision – “I just wanted someone to come and talk it over – was he going to die?” Effect of stroke on relationships – “Things will never be the same again” Effect on the carer – “ I just cried and cried” Loss of privacy – “District nurse at the backdoor, doctor at the doorbell, carer trailing teabags across the floor, whilst I try to eat breakfast with my family”

  17. Evaluation Session Evaluation “it’s time out for me to meet people in the same situation” “we all understand each others problems and heartaches’” Overall evaluation “When we first met and I looked around the room… wondered how we would get on…now one big family’” “benefits of sharing with others who understand – not just being ‘a grumpy old woman’, “creation of a bond of friendship” “being better able to cope with caring role” “social benefit of getting out and about”

  18. Sustainability ……………… The Future Funding Self funding Members proactive Support Personal and Public Involvement (PPI) strategy for NHSCT Presentations Carers Strategy Group (NHSCT) Practice Nurses (NHSCT) Listening and Learning together (Patient & Client Council) Roll out to other areas of NHSCT Membership Increased Creation of database of carers No men!

  19. Thank You !

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