CEN Education Day

Discussion Session

What do we mean by “risk assessment”

• Something that we wish we had done better when things go badly.

• Something we forget if things go well.

Considerations

• 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?

• Exacerbated gut dysmotlity

• More frequent / severe resp problems

• Inadequate nutrition• Reduced life expectancy

What outomes do we hope for?

• 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 CAge 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 months.

• 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 expectancy

• Are the expectations for management at school reasonable?• What process will you follow to make a decision? Particular

importance of good communication / agreement between professionals

• 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 imminent

• 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 situation