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

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

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

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

6. The research...... Benefits of a support group Improvements on measures of caregiving burden Reduced depression Increased morale Decreased sense of loneliness Increased knowledge 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 together with people in a similar position and to support and receive support and learn from each other. This will help us to cope by 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. Function of the group Social interaction PR Educational Various speakers Time to ask questions Discussion Support Companionship Sharing of ideas Sharing of experiences Learning from each other Quarterly Newsletter Editorial board – group Up to date info/recipes Local radio Advertising group Posters and leaflets Public areas

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

11. Stroke Awareness Week

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

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. First contact (GP, ambulance, A&E) AdmissionInpatient stay (visiting) DischargeFollow up and support Attitude of staff Information provision Happy Supported Safe Good Comfortable Scared Worried Lonely Sad Out of control Helpless Hopeful Happy Supported Safe Good Comfortable Scared Worried Lonely Sad Thankful Frustrated Angry Overwhelmed Happy Supported Safe Good Comfortable Scared Worried Lonely Sad Exhausted Expensive Nuisance Lost Happy Supported Safe Good Comfortable Scared Worried Lonely Sad Confused Scared Responsible Angry Happy Supported Safe Good Comfortable Scared Worried Lonely Sad Useless On my own Responsible Helpful Distant Understanding Disregarding Caring Aggressive Attentive Helpful Sparse Embarrassed Poor Unapproachabl e Confusing Helpless Write your own words here Why did you feel like this? 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 its 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 !