Stories of tiny, extremely premature babies who survive - and thrive - against overwhelming odds are testament to extraordinary medical advances, but also to the round-the-clock dedication of specialist nurses and to the devoted care of their parents. As more children with serious health problems live with conditions that would have been fatal to earlier generations, it has become clear that the advances in medical science and technology are not being matched by progress in the less glamorous aspects of community health care.

Stories of tiny, extremely premature babies who survive - and thrive - against overwhelming odds are testament to extraordinary medical advances, but also to the round-the-clock dedication of specialist nurses and to the devoted care of their parents. As more children with serious health problems live with conditions that would have been fatal to earlier generations, it has become clear that the advances in medical science and technology are not being matched by progress in the less glamorous aspects of community health care.

Technological developments have made it possible for families to care at home for even seriously ill children who have to be fed through tubes. That is an important step in allowing them to lead relatively normal lives, particularly where there are other children. Where infants are suffering from such challenging conditions, however, the possibility of a crisis that requires knowledgeable, professional intervention is ever-present.

In such cases, the local health visitor or district nurse, whose jobs require them to be generalists rather than specialists, may not be able to provide the expert knowledge required. In an age of computer access and mobile phones, that can be overcome, but only once the gaps in provision have been identified.

In that respect, Professor James Law and his colleagues, in exposing the failings in the system in a report for the Scottish Government, have done the families of the 7000 children with complex medical needs in Scotland a timely service. The number of affected youngsters is expected to grow and additional healthcare professionals, such as physiotherapists and school nurses, become increasingly involved in their care. With some families having contact with as many as 10 different staff from the paediatric hospital, community health services and the council social work department, sometimes the dangers of information not be being passed on are obvious.

Professor Law raises the alarming scenario of a tube-fed child choking to death and questions whose responsibility that would be. That highlights the urgent need for specific training to deal with children with complex needs. Before that can be effective, however, it is necessary to identify who needs to know what. As more fragile children reach school age and are able to attend mainstream schools, for example, it is essential that school nurses have the appropriate skills to deal correctly and immediately with a potentially serious problem. Even the most dedicated parents cannot be with their child 24 hours a day, and without support workers many families could not cope. They need not be qualified nurses, but unqualified workers must have specific training in what to do in an emergency.

When the new children's hospitals in Glasgow and Edinburgh are built and open, there will be fewer paediatric beds available. Before that happens, specialist care must not only be available in the community, but must be part of an integrated system, possibly, as the report recommends, overseen by a nominated person in each health board.