1. 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)

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. 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?

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, , 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