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The National Health Service (NHS) is embarking on significant changes. The new Health and Social Care Act comes into force on 1 April 2013 alongside increasing demographic challenges and capacity pressures. While costs are set to soar, finances are increasingly constrained so that the effective delivery of integrated out-of-hospital care coordinated around the needs of the child and family is vital. The case report1 illustrates how families’ lives are turned upside down when sustaining complex care at home. Adverse medical outcomes may partly reflect the difficulties connecting secondary health and social care. Previous failings in safeguarding show the dangers of a disconnected system and it is critical that the new commissioning arrangements should encourage integration.
There has been a fourfold increase in young patients on Home Parenteral Nutrition (PN) since 1993 with a mean of 13.7 children per million.2 Young mothers are over-represented since teenage pregnancy is a risk factor for low birth weight and preterm delivery. Short bowel syndrome due to necrotising enterocolitis as a cause for intestinal failure has increased. Maternal age less than 20 years is also associated with gastroschisis and a near tripling of gastroschisis cases has led to more children requiring Home PN.3
Home PN requires technical competencies and strict adherence to daily routines. Recurrent catheter related blood steam infection with late presentation is a risk factor for intestinal failure associated liver disease. Intestinal transplantation is offered when PN has reached its limits due to life-threatening complications such as recurrent infections. Care routines continue to be demanding after transplantation. If parents are unable to maintain strict …
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