CEN Education day
24 Feb 2010
How do parents and carers
experience decision making?
Alan Smart, family carer &
Development worker, PAMIS
 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?
Introducing Jamie, age 9
Quadriplegic dystonic cerebral palsy
Profound learning disability
Visual impairment
Musculoskeletal problems
PEG (and fundo. Jamie, age 2½)
New Parents
Terrible time
Lack of support networks
Sleep deprivation
Bombardment of appointments
Introduced into specialised services
Constant demand of Jamie’s care
Difficult to take everything on board
Constant sickness
Weight loss
Ph studies, scopes, tests, medication
Chronic Reflux
Feeding problems
Professional input . . .
…Dietary Services, Speech and Language
Therapy and Occupational Therapy
Making the decision!
Pressured to have PEG?
 Click to edit the
outline text format
 Family constantly busy
 Second Outline
 Stressed and tired
 Persevering
with oral feeding
 Third Outline
 Increasing demands of care role
 Increased expectations for Jamie
to have operation done Outline
 Rosy picture of PEG solves
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
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
The end of oral feeding
Stopped persevering!
Agreed for the PEG to be fitted
Oral feeding gradually slowed to
a halt
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
Ongoing investigations…
Continuing intervention
Jamie’s siblings born
Jamie’s sister and brother
First glimpse of hope
Meeting with PAMIS Co-ordinator
Meeting other families
Sharing knowledge and experiences
Training and education
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
Long term improvement?
Carer involvement must be taken to
the next stage…
…Joint Leadership between family
carers and professionals

CEN Education day 24 Feb 2010