The Psychologist and I

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 Nature of condition Wider Culture School Hospital Family Child History Development

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