Ten years ago most babies born very prematurely never left hospital. Today many survive and not only go home with their parents but, despite complicated medical problems, begin growing up to become adults.

Ten years ago most babies born very prematurely never left hospital. Today many survive and not only go home with their parents but, despite complicated medical problems, begin growing up to become adults.

Similarly medical advances mean children with life-threatening health problems such as cancer, cystic fibrosis and brain injuries have a better prognosis.

The authors of a report on community services for these infants and young people, which was commissioned by the Scottish Government, say hospitals are also discharging them earlier than ever.

Professor James Law, who worked on the report, said: "What people are tending to do is to put a lot more on to the families. If you think about digital technology, it allows them to do stuff to these kids at home (which was once done in hospital), but it means that someone has got to take responsibility for what goes on in the home."

According to the research, some of this responsibility may be falling on staff who are not trained for the job. To help address this problem, the authors recommend each health board appoints someone to oversee the care of children with complex needs.

Professor Law, who is director of the Centre for Integrated Healthcare Research - a body linking staff at Queen Margaret, Napier and Edinburgh universities, explains: "Behind this is an anxiety that we are delegating down to people who are in the community but have less expertise than the people in hospital and there is a risk developing."

By way of example, he asks who is responsible if a child cared for at home, but still fed through a nasal tube, suddenly chokes and dies. Presumably, he says, it is not the doctor who is in the hospital, but then does it rest with a community worker with no expertise in this field who happened to be around at the time?

This is not a scenario Professor Law has chosen at random. He says: "If you do not know about feeding, which might be true of a generic nurse, people tend to feed children on their backs because they treat them like babies. That's very common, (but) they asphyxiate, they choke, because liquid is going down the wrong way. What they need to do is be upright families are going on feeding their children in the wrong position just because they do not have specialist support."

Dolly McCann, lecturer in public health nursing at Queen Margaret and another of the researchers, reports that most managers she spoke to were aware of the need to carry out risk assessments for children with complex needs.

Where issues were identified, services were being provided. The problem, she emphasised, was provision. It varies across Scotland, with people living close to paediatric hospitals receiving more support than those in remoter areas.

While the children may spend much of their lives travelling between hospital and home, the researchers found a gap in services to support this transition.

Professor Law 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. ."

He and his fellow researchers are calling for better training for community nurses and allied health professionals who find themselves caring for children with complex needs, better planning of this workforce and the shift of investment from hospitals, where the young people were once looked after, to the community.

Professor Law says there will be fewer paediatric beds in Scotland once the two new children's hospitals planned for Glasgow and Edinburgh are built, adding to the case for more community services.

He comments: "If we are going to drive people out into the community then we have got to have enough support, otherwise we are going to get down to people who do not have qualifications."

How one family copes with cystic fibrosis

Case study:The first six weeks of Hannah McKnight's life were tumultuous for her and her family.

The little girl lost weight rapidly after she was born and had to be confined to the neonatal baby unit, while her parents, already looking after two-year-old Jocelyn, worried about what was wrong.

When they were able to take Hannah back to their East Lothian home, they received a phone-call telling them the "Guthrie test", used to screen for a range of disorders, had picked up a problem.

Karen McKnight, Hannah's mother, said: "When the health visitor contacted me to say a mutation had shown up in the Guthrie test I asked her to please explain what that meant to me and she said: No, I can't because I do not understand it myself.' "There was no-one at that point who came to see me, I was just given the news over the phone. I was left holding Hannah and Jocelyn and I didn't know where to go or what to do. I felt there was no support."

Hannah was diagnosed with cystic fibrosis, an inherited condition where organs such as the lungs and digestive system become clogged with a thick mucus, affecting their function.

Mrs McKnight and her husband Kenneth are now experts at dealing with the problems it causes - particularly as Hannah's younger sister Carys also suffers the affliction.

Because her appetite is poor, Hannah is fed through a tube in her stomach overnight, so one of the first jobs of their day is disconnecting this correctly.

Both she and Carys then need a range of medication - with the McKnights remembering which pills are required daily, which less often and which relate to their diet.

Hannah also has to use an inhaler and then both she and her sister receive chest physiotherapy - which their parents have also learned to deliver. Finally Hannah has to nebulise antibiotics that the couple have reconstituted from a powder, before she can go to school.

"We are often five or 10 minutes late," says Mrs McKnight, light-heartedly.

These days the couple, who also have a one-year-old son, do receive extra support. Their social work department has arranged assistance in the mornings and evenings, and there are two liaison nurses at the Royal Hospital for Sick Children, in Edinburgh, whom they can ring during office hours with concerns. "We have had a really good level of support," said Mrs McKnight. "The Sick Kids has been fantastic."

However, she does understand some of the concerns raised by the Queen Margaret University research.

When Hannah or Carys have been ill, she says, she has felt almost scared to take them home from hospital. The staff they know on the chest ward are very understanding, but she says it was more difficult when Hannah was in hospital with a stomach complaint.

She says: "I have to say I did feel, when I was in that ward, that I was being pushed out the door. That wasn't good."

It is not just knowing about cystic fibrosis which helps her to look after her children. She says it is also about knowing the system.