1. The Psychologist and I Working together to manage the demands of PKU Claire Rowlands & Anna Brazier Cardiff S Wales

2. How we come to be doing this! A referral Working together Writing together Now this! Aims - To share our experiences and to offer an opportunity for you to share yours in the workshop to follow Themes - Thinking psychologically about living with PKU and about collaborative working - parents and professionals

3. Parents and Professionals: Working together. Working in partnership demands parents and professionals to see things from different perspectives. This talk and the workshop to follow is our attempt to look at how thinking psychologically can help with the every day reality of bringing up a child with PKU. It is also our attempt to share our different perspectives on the experience of working together.

4. First Reactions: Parents’ perspective Is it / are we that bad or mad? What is a psychologist? What could she / he do to help? What will my child make of it? Another thing to cope with / more appointments?

5. Our Main Concerns about Tesni Flat refusal to drink Maxamaid ‘Rituals’ surrounding Maxamaid Amount of time (Tesni’s and family’s) spent on Maxamaid every day

6. That first appointment What on earth are we in for? How could a psychologist possibly help us? A pleasant chat in Anna’s office!

7. Main things that made a difference for us Being able to take a step back and view the situation objectively Talking things through with someone from outside the family Feeling that we CAN manage Tesni’s behaviour Developing clear and consistent aims and strategies

8. Looking back: Main changes we have tried to make Rewarding the ‘right’ behaviour Consistent, non-negotiable rules and expectations around meals and Maxamaid Positive consequences follow drinking Maxamaid

9. Meeting a family for the first time: A Psychologist’s perspective Starting with parents concerns Understanding the impact of a chronic condition Listening to parents and children Making time Having a psychological framework

10. Understanding the demands of a condition How the diagnosis was discussed at the outset - early relationships with the medical team Everyday practical demands of the treatment regime and its impact on family life (finger pricks & diet) Potential outcomes / consequences if regime difficult to maintain

11. A Framework for Thinking Psychologically Wider Culture School Hospital Family Child Development History Nature of condition

12. Thinking about the child Temperament - Relationships Development - Age and Stage Where in the family - how similar different to brothers and sisters Knowledge and understanding of PKU How they cope with procedures

13. Another Psychological Framework Thinking Feeling Doing

14. Common ideas that will influence which changes families will want to make. Oh he has so much to contend with it doesn’t feel right to be strict about X X is too strict so I give him a little bit extra Rewards as ‘bribery’. Children should do things without a reward. We daren’t change anything in case it gets worse

15. Analysing what is happening: Taking a step back to look at behaviour. Who does what when? Keep an accurate record as a first step. Can you spot times when its going well…what’s different? Are children getting more attention for the behaviour you don’t want?

16. Always Easier Said Than Done! Make sure that PKU related demands are not the only things that are non negotiable Try and get all the adults involved working with the same rules Work to your child’s strengths and wishes…use these as incentives to help them learn to do the right thing