Aging with cerebral palsy – where is the team for a team approach?

1. Aging with cerebral palsy – where is the team for a team approach? Juliet Rosie, Kathryn McPherson, Denise Taylor, Suzie Mudge, Sue Stott

2. Acknowledgements This study was funded by a Lottery Health Research Grant Special thanks to: The participants The carers, friends and family members who assisted and supported Christine Ganly – transcription services

3. Current state of play Developmental Medicine & Child Neurology (2009) Adults with Cerebral Palsy v51 sup4 • Pain • Fatigue AGING ↓ mobility, physical activity & function

4. Part of the team? ‘Working with’ or ‘doing to’? Aim of study: what is the experience of aging from the perspective of the NZ adult with CP?

5. NZ adults with cerebral palsy; what’s aging like for you? How Design Qualitative study using grounded theory Data: experiences of adults with CP obtained by semi- structured face to face interviews Analysis: move from description to theory

6. NZ adults with cerebral palsy; what’s aging like for you? Who Design Qualitative study using grounded theory Data: experiences of adults with CP obtained by semi-structured face to face interviews Analysis: move from description to theory Participants 28 adults with cerebral palsy (14 women) Ages 37 – 70 Range of mobility and communication abilities Heterogeneous social and employment roles

7. 5 themes

8. In the team, or on the bench? Know me Listen to me Treat me like a person My GP knows me as a real person and he never assumes things [Female, early 40s] I like my GP because he listens and respects my choices [Female, early 40s]

9. Sidelined ; invisible as a person behind a visible disability Sometimes it puts a real barrier between you and the professional person when they’re just looking at the disability and what you’ve done and they go, “Gosh I really”, you know, and the social work nod as well, “I really think you people are wonderful”. It’s like oh, you know, I actually just came in here because I’ve got thrush, you know, or something that’s nothing to do with your disability (laughing) [Female, late 50s] Health screening & preventative health measures?

10. Sidelined ; assumptions due to the visible disability When I had the babies and they write cerebral palsy on the sheet they assumed I couldn’t shower and dry myself, they assumed I couldn’t… they assume mentally you’re not all there because you have a name on your chart – you have cerebral palsy. I have to tell doctors that when I’m going in for stuff because it is real, but I hate to tell them that. [Female, early 40s]

11. Accommodating difference In the team, or on the bench? Respecting my experience

12. Knowledge & finding solutions In it together – the knowledge journey [My GP is] willing to refer me to um specialists. I’d only ever went to one, a neurologist at the hospital who was really hard to communicate with. [My GP] sent me to another one in [town] who was excellent and easy to talk to and really willing to help and offer suggestions and he’s also given me extensive tests. [My GP is] taking things seriously that others haven’t – like my mouth ulcers that I’ve had all my life; he wants to know why I’ve got them and not just how to help them but why [Female, 40s]

13. Knowledge & finding solutions Going it alone I don’t need to go to a doctor often, I am healthy. However when I do visit a doctor, they treat my immediate medical problem normally, but they don’t have an in depth knowledge of my disability [Male, 40s, CCN] CCN = complex communication needs

14. Knowledge & finding solutions Going it alone I don’t need to go to a doctor often, I am healthy. However when I do visit a doctor, they treat my immediate medical problem normally, but they don’t have an in depth knowledge of my disability [Male, 40s, CCN] CCN = complex communication needs I think it would be immensely helpful were I to have a doctor with a deeper understanding and knowledge of CP. I wanted someone to say “well you know the effect of cerebral palsy on you is de da de da de”. And that didn’t happen [Female, 40s]

15. Respecting my experience In it together – respect my experience They know that I’ve got a genuine answer. When they do respond [the nurses] feel better because they found they’ve solved the problem by not telling me to keep still all the time because it’s putting pressure on, it puts pressure on the patient that you know you can’t keep still and you’ve been told to keep still… It worked out better for me and the staff…once I’ve done it the first time they, they come back to do it again I’m able to stay calm and still because I know that they’ve been told how to, how to treat me. [Male, 50s, CCN] CCN = complex communication needs

16. Expertise vs Experience Educating the experts… I think, I mean in general they should know far more about CP in general, nurses, than they do. I’ve got to tell them about CP…we’re basically always um always being the educators aren’t we? All our life, you know, and we don’t want to educate the health sector. I want to be sick! [Male, late 50s]

17. Respecting my experience …but the ‘experts’ know best? I feel very vulnerable in hospital particularly with doctors you don’t know because my GP and I have spent years trying to get my medication balanced…and the doctors change the prescription, when I protest…they treat me like some ignorant little…they’re the doctor, they know better [Male, 60+]

18. Respecting my experience …but the ‘experts’ know best? I feel very vulnerable in hospital particularly with doctors you don’t know because my GP and I have spent years trying to get my medication balanced…and the doctors change the prescription, when I protest…they treat me like some ignorant little…they’re the doctor, they know better [Male, 60+] It’s like if I am at a doctor’s surgery, because this has happened to me, I’ll say, “Look please don’t leave me on the table on my own because that table’s so thin I will just fall off”. And they don’t believe me and so they leave me and I’m so rigid to try and prevent myself from rolling off….It’s hard if I’m rigid then they can’t really check my ear out or whatever and that’s when they did damage to my ear…because the doctor didn’t listen to me when I said “look you can’t just go poking in there, you’re going to make me jump because of my baby reflex” [Female, late 40s]