CEN Education day
24 Feb 2010
How do parents and carers
experience decision making?
Alan Smart, family carer &
Development worker, PAMIS
Jamie
Outline

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
needs
 Difficult to take everything on board
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
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!?

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
machine”
The end of oral feeding
 Stopped
 Agreed
 Oral
persevering!
for the PEG to be fitted
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
 Constipation
 Ongoing investigations…
 Continuing intervention
 Jamie’s siblings born

Jamie’s sister and brother
A WAY FORWARD
 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