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CLAHRC Wessex Patient and Public Involvement

CLAHRC Wessex Patient and Public Involvement. Theme 6: Complexity at the End of Life. Sally Dace, PPI Champion. Collaboration for Leadership in Applied Health Research and Care (Wessex). This Is Me. Married with 3 children (16, 20 and 22)

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CLAHRC Wessex Patient and Public Involvement

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  1. CLAHRC Wessex Patient and Public Involvement Theme 6: Complexity at the End of Life Sally Dace, PPI Champion Collaboration for Leadership in Applied Health Research and Care (Wessex)

  2. This Is Me • Married with 3 children (16, 20 and 22) • Lots of previous contact with health services and member of health related Facebook groups • Lifelong Asthma and Allergies • Diagnosed with Multiple Sclerosis in 1991 • Long term medication for both these conditions (self administered)

  3. This is Me 2 • Son (20) with Autism Spectrum Condition • Father (82) severely sight impaired and has cancer • Daughter (22) severe nut allergy and other allergies • December 2013 my mother had a catastrophic brain haemorrhage whilst already an inpatient, was placed on the Liverpool Care Pathway and finally passed away 13 days later • January 2015 my father-in-law, already an inpatient after a fall, contracted hospital acquired pneumonia, did not respond to antibiotics and passed away a week later

  4. So Why Get Involved? • Personal experiences have left me feeling there were things that could sometimes have gone better - so what can I do about it? • Moan! Complain! Write letters! – might make me feel better but doesn’t advance services! • Better option is to be proactive rather than reactive - get involved in PPI in Health Research to try to make a difference in a more meaningful way Can we work together to find better ways of doing things?

  5. So How Did I Get Involved? • Facebook • Met with CLAHRC’s PPI Lead and found out about CLAHRC Wessex • Met with Senior Research Fellow from Theme 6: Complexity at End of Life • Met Theme Leads Carl May and Alison Richardson • Joined Theme 6 team in April 2016

  6. What Have I Done So far? • Part of the team! • Theme 6 project meetings • WISeRD meetings • Advice on ethics from the patient perspective • Provide comments on drafts • Attend events: PPI conference – consultation on TEPs (Treatment Escalation Plans) and CLAHRC Wessex Annual Stakeholder Event

  7. What do I get from it? • Channel negative feelings into something positive • Opportunity to be part of making a real difference to patients • Being part of something bigger (not feeling it’s you against the system) • Meeting other PPI contributors, each with a different experience • Excellent support from the CLAHRC– car parking, email, access, annual review, training, being a valued team member, pay and expenses, jargon buster…

  8. What do I bring? • It’s difficult to understand the consequences of what you are doing unless you hear from someone who is affected • A different perspective – I can ask the obvious questions! • Help to increase public confidence in the research by demonstrating that there has been PPI input throughout the process • A way of ensuring methods are acceptable and sensitive to the public • What will be the impact on patients? - ensure that good outcomes for patients are considered throughout There is little point in doing research unless it will benefit the actual users (patients) in some way

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