How to go about it : Bio Psycho Social Ethics and Law Public
health Education
Slide 4
George is Age 5. He lives with his sister, mother and
grandparents in council house. He keeps getting repeated chest
infections since birth and has remained below his growth curve,
falling behind even more each year. On arrival in the UK, he had a
chest infection, being admitted to hospital, and this was how his
CF was discovered. His mother, Nadia, is 31 years old. His mother
is 12 weeks pregnant. She moved to the UK with her husband 3 years
ago, but her husband is now working in Italy. Her father in law has
Alzheimers and her mother in law has severe osteoarthritis. They
live with her, and she is their main carer. She has one other child
Anna, who is 2 years old. Anna has been tested and does not have
CF. Nadias first child was Nikolas, and he died in his first year
from a chest infection. George started school last September but
teachers are concerned that he is falling behind as he is missing
so much time off school. The teachers notice that his mother seems
very low at present. George often looks quite disheveled and often
turns up in school without socks or a coat. (The school nurse has
rung and asked the health visitor to visit the family, the health
visitor wonders if respite care might be needed for the family.)
Nadia worries about Georges health a lot, and although he has had
most of his immunisations, he has missed his pre school booster as
he was unwell. She has asked her GP if he could have a flu jab. She
asks how likely it is that her unborn child may have CF as
well.
Slide 5
Bio o CF : MDT input o Physio o Resp o GI o Endo o Specialist
nurses o Genetics input o Immunisations o Who will do this : GP or
resp consultant
Slide 6
Psycho o Patient o Implications of diagnosis for him, family
and future siblings o Mother o Previous son died of chest infection
o Mental health and support o Other family members o Siblings and
other vulnerable adults being care for by mother might be at risk o
Father is overseas so might not be able to form bonds with
children
Slide 7
Social o Carers (i.e. the mother) o Carers Allowance o Respite
care e.g. Family holiday association o Issues around caring for
elderly relatives with multiple morbidities o Additional paid
carers for father-in-law o Day centre support o Patient o Support
via counselling, charities and societies, CF trust, funding o
Missing school, so is he managing to make friends? o Logistical o
Housing Centre 33 (for young people under 25) o Income
Slide 8
Ethics and law o Consent issues around screening an individual
within a family for a genetic disorder o Antenatal screening o
Preimplantation genetic testing o Selective termination o Child
protection o Neglect (Cinderella law) o Statutory bodies are: 1.
Police 2. Social services (there is an emergency duty team) 3.
NSPCC
Slide 9
Public Health o Screening o Guthrie testing and what to include
o Antenatal screening o Immunisations o Health visitors and school
nurses o Role of social services
Slide 10
Slide 11
Guthrie Test Phenylketonuria (PKU) Congenital Hypothyroidism
(CHT) Sickle Cell disorders Cystic Fibrosis (CF) Medium Chain Acyl
Co-A Dehydrogenase Deficiency (MCADD)
Slide 12
Education o Educational psychologist o Child missing school o
Potential home-schooling o Benefits vs risks - i.e. lack of
socialisation o Education of other siblings may be affected in
chaotic families o Medication given at school o Dietary
requirements for the school canteen to consider o Teachers to
report symptoms or drug SEs
Slide 13
Things to remember: MDT Specialist nurse Support group Child
protection If suspect, have a statutory duty to report. Statutory
bodies are: 1. Police 2. Social services (there is an emergency
duty team) 3. NSPCC Stop it now can advise against child sexual
abuse Education Other children in family Public health Free school
meals Every child matters Sure Start Change for life Vouchers for
milk/fresh fruit and veg Benefits DLA (Disability Living Allowance)
Attendance allowance Day centres Respite
