Samuel Paul
Morley
August 16th 2002 – June 12th 2004
Priorities for children with
exceptional healthcare needs
identified by parents
• Introduction To Sam
• Medical History
• Support
• Conclusions
Introduction
• Family
Introduction
Condition
Menkes
• mutation on the X-chromosome,
• affects transport of copper into particular cells,
• varying degrees of severity,
• some parts of body affected more than others.
Introduction
Condition
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little normal brain activity,
poor visual ability,
fragile bones,
low muscle tone,
feeding, bladder, breathing difficulties,
constant infections.
Introduction
Abilities
• Good hearing,
• Communicated using facial expressions,
vocal sounds, head shaking and finger
movements,
• Engaged the affection of those around him.
Medical History
Birth – 10 months
• Birth - special care unit,
• Development - delayed,
• Seizures - first noticed at 4½ months,
• Feeding - gastrostomy at 9 months,
• Distress/Pain - unknown cause.
Medical History
10 – 17 months
• Medication - 30 oral medications each day,
• Feeding - jejenostomy,
• Bladder - diverticular led to catheritisation,
• Home - 15 weeks.
Medical History
17- 22 months
• Infections – major collapse,
• Feeding - put on weight,
• Respiratory - eventration,
• Bladder - bladder stones and regular blocking of
catheter,
• Development - tiring more easily, showing less
interest in play.
Support
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General Practice
CHAS
Royal Blind School
Bright Sparks
Pharmacy
Palliative Care Team
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Health Visitor
Therapists
Outreach Team
Social Work
Hospital
Caloreigh
Support
Excellent Support
• communication,
• attention to detail,
• availability,
• compassion and understanding,
• good advice.
Conclusions
The priority for Sam was to have the best quality of life
possible. This involved
• Medical needs met
• Stimulation
• Love
I believe that Sam had the best quality of life when he
was at home with his family but to be at home involved
high level of support. The biggest difficulty for Sam was
getting his medical needs met whether he was at home
or in the hospital.
Samuel Paul
Morley
August 16th 2002 – June 12th 2004