CEN Education day 24 Feb 2010
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Transcript CEN Education day 24 Feb 2010
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?
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outline text format
Family constantly busy
Second Outline
Stressed and tired
Level
Persevering
with oral feeding
Third Outline
Increasing demands of care role
Level
Increased expectations for Jamie
Fourth
to have operation done Outline
Levelall
Rosy picture of PEG solves
Fifth
problems!?
Outline
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 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
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