The Herald Society: Why is the NHS so bad at handling child patients as they become adolescents and then adults, asks Karin Goodwin

Who can forget the angst of being a teenager? It's a time of intense change - both physical and emotional - of re-defining boundaries, rebelling against parents and coping with hormones, peer pressure and the wider world while struggling towards adulthood.

Now, imagine dealing with all those changes and a chronic illness and having not only to negotiate normal teenage territory but also take on board a growing responsibility for managing your own condition and treatment.

Finally, there is yet more change. In the teenage years, chronically ill people must go through "medical transition", which means leaving behind the bright and colourful children's hospital they may have virtually grown up in, surrounded by a familiar medical team, and move into the unknown world of adult services. Sadly, that move is not always as smooth as it should be.

"Adolescents have not really been looked at as an important group in their own right," admits Professor Chris Kelnar, Consultant Paediatric Endocrinologist at Edinburgh's Royal Hospital for Sick Children. "We need to recognise that young people are not just mini-adults. They have their own special needs and difficulties.

"More and more young people with chronic illnesses such as cystic fibrosis are now surviving into adulthood, and potentially have excellent quality or even completely normal lives, but do need a lot of support in terms of adult care.

"Yet there are many areas in adult provision which don't really cater for the needs of these young adults, and in particular there is only really patchy liaison between paediatrics and adult care."

In recognition of these concerns, Prof Kelnar is chairing a committee of the Royal College of Physicians of Edinburgh charged with drawing up draft guidelines to ensure that the transition between children's and adults' services is made as straightforward as possible. Those guidelines will be up for discussion at an open meeting, Lost in Transition, to be held next week.

Even though it is only at a draft stage, the guidance he and his team have produced seems comprehensive, tackling issues from teenage rebellion against treatment to fertility counselling, and from confidentiality to preparing for the stark reality of the adult wards.

At its centre are more general recommendations. Transition, it is stressed, should be an "active" process - not a one- off event - allowing young people and their parents to be prepared for the switch from early adolescence.

Regular visits and meetings with adult staff ahead of time should be arranged to provide reassurance, and transition should not be considered complete until the young person is "fully embedded" in adult services.

The age at which transition should be made should also remain flexible. This is a topical issue in Scotland, where debate is currently focused on whether children's hospitals should be made responsible for young people until they are 16 or 18. The guidelines suggest assigning a key worker to each young person or arranging adolescent clinics, offering peer support.

That would have benefited 19-year-old Charlene Gay, from Kilmarnock, who was diagnosed with a rare tumour-related condition - retroperitoneal lymphangioma - when she was seven, and recently underwent "transition".

Charlene, who will speak to medics at next week's meeting, feels that because her health improved in her mid-teens, and her symptoms have only recently returned, she missed out on the support that she needed. "Because I didn't move straight from one hospital to another when I was 18 I never got an introduction to adult services, and that wasn't ideal," she explains.

"When I started having symptoms again earlier this year, I was sent to my local hospital for an X-ray. As there had never been a proper handover, I felt nervous about whether or not they would know anything about my history. It was very worrying."

Gay believes that more information would have given her the reassurance she was looking for. "I grew up with the people at Yorkhill, and suddenly I didn't know what was going to happen," she explains. "Knowing more about the way my treatment was changing would have helped."

That wasn't the only problem. She experienced a marked difference between the services she had as a child and as an adult. The change was not always positive. "I found that, as a young person, the adult doctors and nurses often patronised me," she says. "A nurse once asked me if I'd had this procedure before and I explained that I had but not since I was at paediatrics. She asked me if coming here to get it done meant I was now a big girl'.

"Maybe she was trying to be nice, but the effect was that I felt like nobody was really listening to what I had to say."

That is also a problem recognised by Prof Kelnar's committee, which recommends training for both adult clinicians and paediatricians on how to talk to young people at the right level.

It also highlights the need for doctors not just to address the clinical issues but also to grapple with the thornier social factors associated with the teenage years, from sexual relationships to experimentation with alcohol and drugs.

Teens with a chronic illness do not always want to modify their behaviour accordingly. "Risk taking is a part of growing up, and testing boundaries, and in the context of chronic illness that goes on just as much if not more than among their contemporaries," says Prof Kelnar.

And yet these teenagers need to be aware that joining in with their peers can sometimes put them in danger.

"The mortality that you get with young people with diabetes, for example, is usually a result of falling asleep not having eaten anything after having had a lot of alcohol the previous evening," he explains.

Sexual matters are often overlooked by those responsible for treatment, too.

Prof Kelnar says: "I think there is a feeling amongst the public, and even some health care professionals, that young people with chronic disorders having normal sex lives and appetites don't mix. But more and more people are surviving longer and wanting to have normal lives in every way."

As a result, the guidance states, information should be given on issues as varied as fertility issues, contraception, risks associated with pregnancy, genetic counselling, and on social factors such as what to tell partners.

Cara Doran, the Cystic Fibrosis Trust's patient advisor for Scotland, who has been involved in one of the sub-committees drawing up the guidance, claims this is badly needed.

"Many guys with cystic fibrosis are infertile, but we know from research that most of them didn't know about that until they had already settled down with a partner or were thinking about having a family," she says.

"At that stage, it came as a shock and that's why the guidance suggests that transition is the time for them to get all that sort of information."

Doran, 29, has cystic fibrosis herself, and can also relate on a personal level to many of the issues raised. The committee she sits on also raised the difficult area of adolescent rebellion against treatment, which can include failing to take medication and missing hospital appointments.

"Certainly, I went through a stage of thinking that the doctors must be wrong, that I didn't need all these drugs," she says. "You do test and see what you can do without. The problem for a lot of people is that it can have a negative impact on their condition."

This is also extremely worrying for the parents, who until recently had ensured their child took all their prescribed medicines.

"I recently asked my mum about it and she said it was a horrendous period," says Doran. "She felt totally shut out and no-one would speak to her about it."

While no-one can change Doran's mother's experience, under the guidelines parents will get more support throughout transition and be kept up to speed with the often frightening changes that mean they are less involved in their child's care.

And the draft guidance is only the start, says Prof Kelnar.

He hopes that it will mean that the process of change will eventually be a happier one. "When you've seen youngsters with chronic health problems over very many years, you become very attached to them and - like the parents - it can be difficult to let go," he says with a smile.

"But when you see someone who has come through that and is successfully growing into a young adult and moving on, that can be hugely rewarding. That is what we're aiming for."

Lost in Transition: the Essential Link Between Paediatric to Adult Care will be held on Tuesday October 30 at the Royal College of Physicians of Edinburgh, 9 Queen Street, Edinburgh EH2 1JQ. For more information, call 0131 247 3636 or see www.rcpe.ac.uk