5: Benjamin

Benjamin is 4 years old and has short-bowel syndrome. He lives with Mum and Dad and younger brother, Nathan who is 2 years old. Mum provides full time care for the boys and Dad has access to part-time employment, however this is quite sporadic and requires him to work away from home at short notice. The family live in an upper floor council flat on the outskirts of the city and are well-known to the local tertiary hospital. They have access to the grandparents’ car but Mum cannot drive and relies on Dad being around to transport them to the hospital for clinic appointments or ward admissions.

Benjamin spent the first 18 months of his life living in hospital requiring frequent bowel surgery and relying on total parenteral nutrition (TPN) to survive. He also required intensive input from a range of practitioners – physiotherapist, dietetics, speech and language, gastro-intestinal (G-I) and nutrition nurse specialists and the G-I medical team. Once his condition stabilised, the discharge liaison service became involved along with the community children’s nurse (CCN) to plan a bespoke home care package for him which involved provision of overnight care staff 7 nights/week. The CCN acted as Lead Professional, co-ordinating services and care and providing home visits initially on a daily basis, reducing this as staff and family became familiar with the care package. Mum and Dad have been discussing the need for Benjamin to receive more social input to encourage and stimulate his development. They want to discuss the implications for Benjamin to start going to nursery.  

  • What key issues can you identify for Benjamin and his family?
  • Discuss the role of the child health nurse in addressing these issues
  • What policy/frameworks/legislation may be effective in assisting discussions/plans for Benjamin to attend nursery?

› Suggested answers

  • Key issues for Benjamin and his family: social integration with other children; education and training for nursery staff re his condition and care requirements; identification of a key worker from health and education; location of nursery and possible transport requirements; funding of transport, care package and staff training; expanded role of teaching assistants in health care provision; anxiety from Mum and Dad in leaving him in an unfamiliar environment; practicality of day-to-day family functioning with younger brother Nathan to accommodate; separation anxiety for Benjamin and Nathan; emergency care planning; need for ‘patient passport’ to ensure staff know how to communicate with Benjamin.
  • Role of the child health nurse – providing support to Benjamin and the family; reassurance for parents; partnership working with parents and school staff in relation to education and training for Benjamin’s care needs; communication and empowerment; co-ordination of care between social work, education and health; formation of the patient passport in conjunction with parents; provision of health care related equipment; regular liaison visits with school staff and teaching assistants.
  • Relevant legislation – Common Assessment Framework; Getting it Right for Every Child; Children and Young People (Scotland) Act (2014), United Nations Convention on the Rights of the Child (1989).