These are the slides to go with my talk at the conference in Manchester on 4th September 2014. There were around 300 people in the room (clinicians, CF parents, researchers, Pharma and others) and the conference was live webstreamed for anyone to watch. The full proceedings are available to watch here: http://www.cysticfibrosis.org.uk/who-we-are/conferences-and-events/uk-cf-conference-2014. My talk is 1 hour 35 mins into the afternoon session.

1. cysticfibrosis.org.uk
Putting the patient voice at the heart of care
Oli Rayner

2. Patient voice
I

3. Actions speak louder than words
Patient
Engagement
Patient
Involvement
Patient
Voice
Empowered
Patient
Activation
Patient
Participation
Healthcare
Patient-
Centred
Personalised
Medicine

4. Current situation
 We have:
 Some patients consulted on ad hoc basis (centre/national level)
 Usual suspects - loudest voices/time/resources
 South East England bias
 Parental voice louder than that of pwCF and priorities may differ
 We need:
 Open mechanisms for anyone affected by CF to have a say
 Gather representative views (parent/pwCF, geography, age)
 Open acknowledgement of issues and challenges
 Effective use of virtual meeting technologies
 Cystic Fibrosis Trust is working hard to make this happen
 But if the platform was there to give patients a real voice…

5. Would patients speak up?
I

6. Myth
Clinical Guidelines/Standard of Care mean
CF care is the same at every CF centre

7. Reality = care is different in every centre
 Some have dedicated CF units, others have CF teams working
on non-specialist wards
 Some have 1-2 day waiting times for beds, others weeks
 Some make you share toilets with other CF patients, others
have special protocols or rooms with their own toilets
 Some have a full CF team, others are incomplete
 Some provide eFlows, others don’t or rely on a local charity
 Some have Vascular Access Teams, others don’t
 Some have very good food, others have really bad food
 Some have WiFi, others don’t
 UK CF Registry data tell us health outcomes vary by centre too

8. List of Demands
1. Right to know both CFTR mutations and treatment implications
2. Right to ask as many questions as you want, make informed choices
3. Right to a treatment plan based on individual priorities and goals
4. Right to access personal health information
5. Right to find out about clinical trials and participate if eligible
6. Right to understand what good CF care looks like
7. Right to see how individual CF centres compare
8. Right to raise issues without fear
9. Right to have a say on how care can be improved
10.Right to have a say on what research should be done

9. Punchline
Understanding what good CF care looks like
and demanding it in our own CF centres will
help our CF teams secure the funding they
need from their NHS Trusts to make it happen.
