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Supporting children with IBD

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To be diagnosed with a chronic condition like Inflammatory Bowel Disease (IBD) is devastating for anyone, but it can be particularly traumatic for parents to learn that their young child has this painful and debilitating illness.

There is little doubt that the work of Jane Clayton, paediatric gastroenterology nurse specialist at Booth Hall Children’s Hospital in Manchester, is invaluable.

‘Until I took on this role I had no idea how much IBD can impact on whole families,’ says Jane. ‘No two families are the same and the disease can be very hard to come to terms with, particularly in the first twelve months after diagnosis.’

Having worked in neonatal surgery and gastroenterology, Jane was a paediatric nutritional nurse specialist for ten years before taking up her current post, as one of two full time IBD nurse specialists, at Booth Hall in 2003. With a caseload of over 200 hundred families, she treats children as young as three who have been diagnosed with ulcerative or indeterminate colitis and Crohn’s Disease.

‘IBD is a very unpredictable disease and can be difficult to control. Some children may only require a minimal amount of treatment and we may not see them for years, but for others it can be very debilitating. Part of my job involves helping families recognise the onset of a flare up so that treatment can be started quickly and the impact of the disease can be limited.’

Jane and her colleague are the first point of contact for the families of children with IBD, and they operate a helpline so that parents can get help and advice from trained specialists whenever they need it. ‘Families rely on you and, although most of them cope admirably, it is very much dependant on the way the disease behaves. I am available from seven am until four thirty pm every day of the week, and out of hours families can ring one of the wards or contact the on-call registrar if it is an emergency.’

When a child is diagnosed with IBD, or is admitted to a ward, Jane makes contact as soon as possible and liaises with the multidisciplinary team regarding their care. She works with three consultants and also has dedicated clinic time to see patients to take bloods, monitor their drugs and discuss any blood results or treatment options with parents. She also liaises with community paediatric nurses and district general hospitals so that the appropriate referrals are made, and community support is put in place for children who require intravenous or nasogastric feeding outside of the hospital setting.

In its standard on ill children, published in October 2004 as part of the National Service Framework for Children, Young People and Maternity Services, the government set out guidelines on the management of children with long term conditions. They stated that the aim of care should be to enable a child to manage their illness so that they can live an ordinary life and not miss out on educational opportunities due to ill health.

‘It is very important that children with IBD are given the opportunity to live as normal a life as possible,’ Jane stresses. ‘Like all kids they want to go to friends’ houses and have sleepovers, but this can be a worry for parents. I help educate the parents so that they can learn to let go sometimes and let their children live their lives. In some situations it can be difficult for children with nasogastric tubes or IV feeding to attend school, so I also liaise with school nurses and health visitors to make this easier.’

Because IBD is a chronic condition it does not stop when a child reaches adulthood, and making the transition from paediatric to adult care as smooth as possible is very important to Jane. ‘When a child reaches fifteen or sixteen it becomes increasingly important that people from the adult side become involved. The disease will impact on their adult life and they need to be given the right advice to make informed decisions about their care so that they can keep the disease process to a minimum.

‘When a child leaves education is often the trigger for referring their care, but it is also vital that the transition of care be done when the condition is stable so that it is not too traumatic for the patient,’ she adds.

Over the next few years, Jane hopes to develop a transition programme to help this process run more smoothly, and she is also working on setting up a support group to put the families of children with IBD in touch with each other. ‘We had a family evening last March that went really well, and we have another one planned for September [2006]. Families can learn from each other’s coping mechanisms and help support one another.’

Although Jane’s job is very demanding, it was all made worthwhile when a recent audit of the telephone helpline yielded some very positive results. ‘It is of enormous benefit to parents to know who to talk to and where to go for help,’ she says. ‘They used to have to speak with the consultant’s secretary, who has no medical training, and this placed a huge burden on both parties. Now they can speak to someone who has knowledge of the disease and can make decisions. Although you sometimes have to be prepared to be on the receiving end of a phone call from an angry or frustrated parent, it still feels great that I am able to help them in this way.’

How do I become… a paediatric gastroenterology nurse specialist?

This could be for you if: you are interested in working with children who have a chronic illness that can often be unpredictable, and their families, and have a keen interest in gastroenterology.

You need to be good at: working autonomously as well as part of a team, have good organisational and communication skills and be a good decision maker.

You need to have: a paediatric nursing qualification, a background in gastroenterology and be educated to degree level.

You don’t need to have: a masters degree, but this is becoming increasingly desirable for specialist nurse posts.

Other similar jobs you could consider: community paediatric nurse, paediatric nurse on a surgical or gastroenterology ward.

Where to find more information: To find out more about children with IBD you can visit the Children with Crohn’s and Colitis website at www.cicra.org, or the British Society of Paediatric Gastroenterology, Hepatology and Nutrition at www.bspghan.org.uk. For general information about IBD and to support the campaign for more specialist nurses in this field go to www.nacc.org.uk.

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