Exclusive: Children being sent home from hospital with serious medical problems are having their safety put at risk, an official report for the Scottish Government has warned.
Children being sent home from hospital with serious medical problems are having their safety put at risk, an official report for the Scottish Government has warned.
The researchers say it is "extremely worrying" that unqualified staff are being left to help look after up to 7000 of the most vulnerable and sick young people in the community.
They highlight concern over the wide variation in support available to families, who have to handle technical equipment and complicated drug regimes to look after their children, and gaps between hospital and community care services.
Professor James Law, one of the lead writers of the hard- hitting document, compared the potential vulnerability of the children to those neglected and abused, citing the Baby P case as an example of what could happen when care services failed.
He did not know of any children with complex needs who had died from mismanagement but added there was a concern about the capacity within the workforce to respond to the families at the level and expertise required.
He said: "I think these children are important in the way that children being abused and neglected are important because they test the whole idea of an integrated health and social care system. If we look at all the cases, and Baby P is the most recent one, almost all of these reports say that integrated working is the way forward."
There are 7000 children with complex medical needs in Scotland at any one time, according to an official 2007 estimate, but this number is expected to grow. More premature babies are surviving, but according to studies around one-quarter of those delivered between 22 and 25 weeks suffer severe forms of disability, such as being unable to feed or walk unaided.
Children are also increasingly likely to endure health problems such as cancer and brain injuries, which may leave them requiring intense medical support.
Parents are having to learn how to administer complicated drug combinations and look after tube breathing and feeding equipment.
Against this background, the Scottish Government health department commissioned researchers to provide a picture of the key issues facing nurses and allied health professionals who care for this group of young people in the community.
In a summary of their findings the researchers, from Queen Margaret University in Edinburgh, state: "There were not enough staff with the appropriate level of expertise to deliver the necessary services."
Staff told them unqualified support workers were being asked to take on jobs previously performed by trained professionals, such as school nurses and physiotherapists.
Nurses without experience in dealing with children were also said to be involved in their care, something Professor Law described as "extremely worrying". In addition, the children and their families could be in contact with as many as 10 professionals and several agencies at the same time. The report says: "The number of practitioners involved with children and young people can lead to duplication of record-keeping, frustration on the part of families and young people and considerable potential risk in terms of safe case management."
The report seen by The Herald was commissioned by the Scottish Government. It has been completed by researchers and submitted to the health department but has not yet been officially published.
A Scottish Government spokesman said: "It's vital that children with complex health needs get the best- possible care and this research has been commissioned to help us improve the way we care for them in future.
"This document is an unpublished draft which has yet to go through a rigorous quality assurance process before it is published in the new year."
An on-going study of families with severely disabled babies by charity Capability Scotland has also found they suffer from a lack of support.
Garry Leach, speaking for the charity, said: "Parents can go home from hospital feeling very isolated and don't know how to access all the different services."
