CEN Education Day

CEN Education Day
Discussion Session
What do we mean by “risk
• Something that we wish we had done
better when things go badly.
• Something we forget if things go well.
What the family want
Anxieties of professionals and other carers
What is “best” for the child
Risks - v - Benefits
Life expectancy - v - Quality of life
Autonomy and Advocacy
What is the evidence?
Risks - v - Benefits
What could go wrong?
What outomes do we
hope for?
• Exacerbated gut
• More frequent / severe
resp problems
• Inadequate nutrition
• Reduced life expectancy
• Adequate nutrition
• Eating a pleasure for
child and family
• Health improved or at
least maintained
Case A
Age 2
• Undiagnosed severe hypotonia (low tone)
• Poor head control leading to problems with head position
for feeding
• Poor oro-motor control, xs drooling
• Epilepsy which can be poorly controlled some days
• Weight beginning to fall from 50th to 25th centile
• Mother wants to maintain oral feeding, father wants to start
tube feeding
Case B
Age 5
• Parents very much want to continue oral feeding
• Feeds can take up to 1 hour and require a high
degree of skill
• Video-fluoroscopy shows slow swallow with
tendency to aspirate with liquids and towards the
end of the examination
• School want to have training, but can not guarantee
one person regularly to feed the child
• Over the past 6 months the child has had 3
admissions to hospital with chest infections
Case C
Age 18
• Severe cerebral palsy ,4 limb involvement with
increased tone
• Gastrostomy in situ
• At risk swallow, so only having small tasters orally
and most of nutrition via gastrostomy
• Bolus feeds via gastrostomy at mealtimes
• Known to be prone to reflux, has had previous
fundoplication, when gastrostomy sited
• No problem with chest infections over past 18
• Weight continues on 10th centile
Consider case A:
• What investigations could/ should be done? comprehensive
assessment needed
• How long is a reasonable time to take to feed?
• Should we worry about the weight?
• What other factors could be considered? Need to be clear about
parents understanding of condition and views. Clarify benefits
and risks of tube / oral feeding
• What should we do if professionals and parents can’t agree?
Explore both parents understanding and emotional position.
Sensitive issues should not be discussed in MDT meetings
Consider case B
• Will investigations help, and if so which?
• How will you evaluate risk and benefit of oral feeding to the
child? Need to ensure that family are aware of limited life
• Are the expectations for management at school reasonable?
• What process will you follow to make a decision? Particular
importance of good communication / agreement between
• Is the same decision relevant for school and home? Need to
address school carers anxieties
• Importance of good communication in this scenario
Consider case C
• Do things need to change moving to the ‘adult’ world? Many practical
changes e.g. supply arrangemnts. Learn to deal with the diferent way
adult services work
• What factors might need re-evaluated? Cognitive level and advocacy
atonomy. Need to address some practical / policy differences
• Who will provide training and support to the young person and his/her
carers? Need for transitional care worker
• Do parents also need to change how they meet the young person’s
nutritional needs?
• Does the risk evaluation process change once a child reaches 16years?
Possible need for liability insurance
• How long is a reasonable time to take to feed? Various suggestions up
to 45mins
• Should we worry about the weight? Consider SD scores
Discussion summary
• Importance of key worker
• Need for “anticipatory discussions early on
• Important to raise issues in advance of them becoming
• Key worker role. In communication
• Include in CSP
• Anticipation where possible
• Information leaflets and web sites
• Parent groups
• Email communication
• Key worker appointment process variable and
transition to adult services is problematic
• Some professionals involved from cradle to grave
but geographically variable
• More primary care involvement esp in rural

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