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

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)

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

Can we work together to find better ways of doing things? 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?

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

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

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…

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