1. CEN Education day 24 Feb 2010 How do parents and carers experience decision making? Alan Smart, family carer & Development worker, PAMIS

2. Jamie

3.  Introducing Jamie  Pre PEG feeding  How family was involved in decision making process changing from oral to peg feeding  Professional input and support available  What can be improved? Outline

4. Introducing Jamie, age 9  Quadriplegic dystonic cerebral palsy  Profound learning disability  Visual impairment  Musculoskeletal problems  PEG (and fundo. Jamie, age 2½)

5. New Parents  Terrible time  Lack of support networks  Sleep deprivation  Bombardment of appointments  Introduced into specialised services  Constant demand of Jamie’s care needs  Difficult to take everything on board

6. Pre PEG  Constant sickness  Weight loss  Ph studies, scopes, tests, medication  Chronic Reflux  Dysphagia  Feeding problems  Professional input... …Dietary Services, Speech and Language Therapy and Occupational Therapy

7. Click to edit the outline text format Second Outline Level Third Outline Level Fourth Outline Level Fifth Outline Level Sixth Outline Level Seventh Outline Level Eighth Outline Level  Ninth Outline LevelClick to edit Master text styles Second level  Third level Fourth level  Fifth level Making the decision! Pressured to have PEG?  Family constantly busy  Stressed and tired  Persevering with oral feeding  Increasing demands of care role  Increased expectations for Jamie to have operation done  Rosy picture of PEG solves all problems!?

8. Mum and Dad decisions, decisions !  Jamie’s mum – persevering with oral feeds  Jamie's dad – inevitable for PEG? gave in  Eventually Jamie had to have a PEG fitted as he was just getting too thin

9. How parent-carers feel  “Frightens the life out of me … the biggest fear in my life”  “A huge challenge”  “Taking away the last of their abilities”  “They can’t be bothered feeding… bypassing and mechanising caregiving by hooking people up to a machine”

10. The end of oral feeding  Stopped persevering!  Agreed for the PEG to be fitted  Oral feeding gradually slowed to a halt

11. PEG feeding – post PEG  Jamie’s ongoing problems  Still dealing with sickness  Jamie began to have choking episodes requiring emergency treatment  Severe trapped wind/bloating  Constipation  Ongoing investigations…  Continuing intervention  Jamie’s siblings born

12. Jamie’s sister and brother

13.  First glimpse of hope  Meeting with PAMIS Co-ordinator  Meeting other families  Sharing knowledge and experiences  Training and education A WAY FORWARD

14. What can be improved?  Valuing and tapping into the resource and expertise of family carers  Giving parents access to evidence based info. on the proposed procedure  Having other parents to talk with  Counselling services/life coaching  Quality training for all frontline carers  Advocacy being offered  Having basic assessments carried out: carers needs, and single shared assessment  Having care co-ordinators to help with the management of the Jamie’s ongoing care needs  Professionals to communicate important information to family carers in writing as well as verbally

15. Long term improvement?  Carer involvement must be taken to the next stage…  …Joint Leadership between family carers and professionals