1. Paeds Complex Cases / GP

3. How to go about it : Bio Psycho Social Ethics and Law Public health Education

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 Alzheimer’s 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. Nadia’s 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 George’s 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.

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

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

7. Social o Carers (i.e. the mother) o Carer’s 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

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

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

11. Guthrie Test Phenylketonuria (PKU) Congenital Hypothyroidism (CHT) Sickle Cell disorders Cystic Fibrosis (CF) Medium Chain Acyl Co-A Dehydrogenase Deficiency (MCADD)

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

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

15. Cerebral palsy – MDT – orthotics, orthopaedics, physio, OT, SLT, CDC, specialist nurse – Voluntary – Scope, HemiHelp, Brain&Spine foundation Autism – MDT – CDC, child psychiatrist, specialist psych nurses – Voluntary – National Autistic Society Cystic Fibrosis – MDT - physio, respiratory and GI doctors, specialist CF nurses, dietician – Genetics input – Immunisations – Voluntary – Cystic Fibrosis Trust Duchenne Muscular Dystrophy – MDT – orthopaedics and orthotics (for scoliosis, contractures), cardiology (for cardiomyopathy), physio, OT, specialist nurses – Genetics – Voluntary – Muscular Dystrophy Campaign, Action Duchenne