The Management of Long-Term Health Conditions for Children and Young People

Living with a chronic disease may have a significant impact on a person’s quality of life and on their family. Whilst many children and families manage their health well with the support of the health care or multi-disciplinary team, there are some children who will develop complications from their condition. Such complications may further lead to impaired health. In some instances children may die as a natural consequence of their medical condition. Tragically, some children may die as a result of poor management of their health; it is these deaths which are potentially preventable.

Following the death of a child as a result of a complication from a long term medical condition, the DSCB has produced a piece of guidance in order to better help agencies in the way they work together with families to achieve the best outcome for the child. By these means, it is hoped to reduce the likelihood of a similar event occurring in the future.

This guidance is called Multi-Agency Guidance for the Management of Long Term Health Conditions for Children and Young People and its aim is to:

  • improve the response of professionals to failed medical appointments;
  • improve the sharing of medical advice and instructions with parents and child;
  • improve clarity over the responsibility of adults, parents and professional staff around managing medical conditions;
  • improve staff confidence and competence around managing a child with a long term medical condition;
  • improve training content and staff training records relating to managing medical conditions;
  • achieve more clarity of responsibilities when convening a health planning meeting;
  • improve multi agency working – e.g. contribution of the Education Social Work and Attendance Service for children with medical conditions;
  • gain better access to information of those children moving in and out of area;
  • produce guidance for the management of long term medical conditions where poor concordance with recommended therapy (including attendance at appointments) is causing or likely to cause significant harm to the child.