'We had a vision of a better service'

June Rogers won her NT Award after she overhauled children's continence services to provide integrated care. She talked to Clare Lomas

Continence problems can be painful and embarrassing. For young children they can also be frightening and confusing, leading to emotional and behavioural problems. More than 500,000 UK children suffer from conditions such as enuresis, faecal incontinence and constipation, yet paediatric continence services vary widely.

It was a desire to provide a more holistic service that led June Rogers – winner of the 2007 NT Award for Continence, sponsored by SCA Hygiene Products and supported by the Association for Continence Advice – to completely overhaul children's services at Liverpool PCT.

June, who is the trust's paediatric continence adviser, transformed a fragmented 'free nappy' service and an isolated bedwetting service, led by school nurses, into a fully integrated continence programme for all children aged 0–16 with bladder and bowel problems. She also set up a transitional service for 16 to 19-year-olds.

'The previous service was very disjointed; children were not being assessed and many were left untreated or referred inappropriately to secondary care,' says June. 'The philosophy needed to change from a free nappy service to a continence promotion service.'

June has worked with children with continence problems for over 20 years. In 2003, while director of the Manchester-based continence charity Promocon, she undertook a national review of UK paediatric continence services.

'The need for the development of integrated services was identified in the 2000 [Department of Health] document Best Practice in Continence Services,' she says. 'Yet we found no integrated continence services for children. There were areas of excellence but services were very ad hoc.'

Integrated, community-based paediatric continence services – to ensure accessible, high-quality assessment and treatment of all children – are also recommended in the 2004 National Service Framework for Children, Young People and Maternity Services, which June's work helped to inform.

Working closely with school nurses, health visitors and paediatric staff at Liverpool PCT and Alder Hey Children's Hospital, June has turned things around very quickly.

Since the service began, the number of children requiring nappies has more than halved – from 627 in 2005 to fewer than 300 in 2008.

'Approximately 15% of mainstream children struggle with toilet training up to the age of three and a half so, in line with current guidelines, we raised the age for the free nappy service to four,' says June. 'But it is not about taking the nappies away – it is about providing alternatives, such as washable training pants and bedwetting sensors.

'We gave one little girl a musical potty which she was absolutely delighted with and within a few weeks she was fully toilet trained. At £25, the potty cost less than a month's supply of nappies.'

All children with nocturnal enuresis are now seen by nurse-led clinics in the community, and only children with underlying problems related to daytime wetting are referred to acute care.

The number of inappropriate referrals to mental health services has also declined dramatically. 'One child was in a great deal of pain because of his constipation. He was on huge doses of laxatives and was under psychiatric care because he would become hysterical and aggressive every time he had to take them.

'But after talking to him – he was a big football fan so we likened having a poo to scoring a goal – and making some changes to his medication, it took less than two months for him to be happily sitting on the toilet,' she adds.

All children with soiling, who used to be referred to a clinic run by child and adult mental health services, are now seen by a paediatric continence nurse first in order to rule out constipation. Consequently, a lack of referrals has resulted in the clinic's closure.

Engaging with the children and earning their trust is crucial to June's role. 'I always visit a child at home the first time I see them because they are like frightened rabbits when they come to the clinic,' she explains. 'At home they are more relaxed and can play with their toys while I talk to them.'

June conducts a full holistic assessment – including medical history, psychological problems and current medications – but never examines a child on the first visit.

'A child needs to have ownership of the problem and they need to verbalise this before the process can start,' she says. 'I spend a lot of time empowering them, helping them to understand what is happening and to realise it is not their fault.'

She also provides the children with booklets to help them understand their condition, special stickers and gold stars for making progress.

Having a child with a continence problem can be very distressing for parents and some require a lot of support.

'The parents of a six-year-old boy who was at mainstream school but was still in nappies were becoming very frustrated,' says June. 'They had tried everything but the child was still locked into a cycle of constipation and overflow soiling.

'The changes we made to his care meant that after six weeks both the constipation and soiling were resolved. The parents were as excited as the child and said it had transformed their lives,' she adds.

Bringing parents on board the new service can be challenging but is vital to its success, says June.

'If a child can be toilet trained, then putting on a nappy sends out the wrong message,' she says. 'I teach parents about medication and ways to help manage the condition because if they don't do what I ask – like getting the child to sit on the toilet or eat more vegetables – the programme won't work.

'Sometimes it can be as simple as getting the child to drink more water; you don't always have to make heroic changes.'

Initially, there was a lot of anxiety from health visitors that parents would not accept the service changes.

'Health visitors do not have my level of knowledge in this field so I initially go with them to home visits,' says June. 'If parents are resistant I have the experience to back up any decisions.'

The numerous policies and treatment guidelines developed by June are being shared with other PCTs. The self-referral rate to the service by families has increased by nearly 100% and

June is in the process of putting together a business plan for further development. She also runs training sessions for school nurses.

June plans to reinvest the £1,000 prize money in more child-centred, family-friendly literature and equipment, and she would also like to attend international conferences to further improve her knowledge base and expertise.

The NT judges praised June for her 'enthusiasm, motivation, energy and drive'. Alison Harris, senior lecturer in public, primary and child health at Middlesex University, says: 'We were delighted to present June with the award for an outstanding piece of work that has its roots in clinical need and has made such a difference to the children and families
who carry the burden of paediatric continence problems.

'Her commitment was evident in that she led the project through from its infancy to its completion.'

June says the new service would not have been possible without the support of her managers, Val Ward and Brenda Spores.

'All three of us had a vision of a better service. I was absolutely delighted to win the NT Award because it justifies the decisions and changes we made. There were a lot of frustrations but when we see the children we have helped, and hear the stories they tell, we know it was worth it.'