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How to make children the expert patients

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Do adults know best? When managing care for children it could pay to ask them what really works. Kathy Oxtoby finds out more

‘I don’t want to be called a “diabetic boy” – that’s not who I am.’ The boy expressing his feelings of isolation and frustration with his condition was taking part in a project led by young people, for young people with diabetes. Thanks to the scheme, children’s concerns and thoughts about how they would like to be treated are being heard by the healthcare community.

The ‘Getting Sorted’ self-care workshops used youngsters to investigate, develop, implement and evaluate a diabetes self-care programme. Researched and delivered entirely by young people, with the support of Liz Webster, a senior lecturer in community specialist practice at Leeds Metropolitan University, the programme has boosted the confidence, self-esteem and communication skills of those involved. Last year their efforts were recognised when they received the NT Award for Child Health, sponsored by Great Ormond Street Hospital for Children.

Ever since Liz began working with children 20 years ago, she has felt passionately that young people and their families should be at the centre of everything she does.

‘It’s not about professionals making decisions – it’s about helping to empower people to come up with their own solutions in relation to their health,’ she says.

Liz was working on a neonatal unit at Leeds General Infirmary, caring for a baby born at 24 weeks’ gestation, when she was inspired to switch to primary care.

‘The family invited me to his christening and it was only then – when we were away from the unit and the hospital – that I realised the lack of support they had for a baby with such complex needs. That’s when I decided to work in the community.’

Liz became a community children’s nurse, working with patients on a one-to-one basis. To develop as a practitioner she took a degree in community healthcare nursing and then a master’s in child health. In 1991 she began a full-time post as a senior lecturer at Leeds Metropolitan University.

‘I wanted to share my experiences with others and make sure that children’s nurses had the right level of advanced skills to work with families in the home,’ she says.

Three years ago she began doing research for the Expert Patient Programme, which was set up to enable people with long-term conditions to manage their own care. But she felt the programme was neglecting a vital part of the population.

‘I asked the question: “Where are the children in all of this?” I felt we should be giving children the skills and strategies to manage their conditions themselves.’

Liz was asked to lead a government-funded project to develop an expert patient programme for youngsters aged 12–17. She took the project a step further.

‘I wanted children to do the research. Young people have their own stories to tell about their conditions and, if they tell them to another young person, this can be more powerful than any expert research.’

Diabetes was chosen as a focus for the study as just 15% of children in Yorkshire are achieving NICE recommendations for levels of control. Poor diabetes control in childhood can impact on long-term control and increase the risk of complications, such as kidney failure, in later life.

A local clinical nurse specialist in diabetes talked about the project to young people with the condition and three of them volunteered to join the research team. With Liz developing their skills at each stage of the research process, the team visited 15 schools across Bradford and asked children with diabetes whether they wanted a self-care programme, (the phrase ‘expert patient programme’ was regarded as being ‘too medical’ by the team) and what they wanted it to be like.

The facilitators talked to 41 children about their experience of having diabetes and what ‘bugged’ them about it. The children frequently said they ‘didn’t feel in control of the condition – that others were controlling it’. Some were embarrassed and ashamed of having diabetes, while others said it was the first time they had been able to talk to someone about it.

Based on discussions with the young people about their diabetes, the facilitators created four workshops to give them skills to self-manage their condition and to improve their self-esteem. The workshops, held at the university sports centre, included work with a local theatre company that acted out some of the young people’s stories and explored solutions to their problems. Following the workshops, the children said they felt more in control of their condition, more assertive and better able to communicate with others.

In March 2007 the Getting Sorted report – so named because, as Liz explains, ‘The kids kept saying: “I’m sorted”, “I’m getting sorted”, “I’m not sorted” when referring to their diabetes – was presented to the strategic health authority. It recommended that the youngsters should have structured education programmes focused around self-care to manage their long-term conditions. The team then developed a self-care programme using results from their research and feedback from the workshops.

Since then, the team has continued to raise awareness of the need for self-care programmes. The researchers and children involved in the project have presented their findings and information on the workshops to commissioners and health providers across the region. Last year they met with Nursing Times judges to tell their story.

The judges commented on the ‘huge energy and enthusiasm’ surrounding the project and the personal transformation it had brought about. They were impressed with the use of young people, not just to research the subject matter but to lead the actual research process, saying: ‘The work could easily be transferred to work with young people with conditions such as epilepsy or asthma.’

In keeping with the inclusive spirit of the project, Liz took the three young people involved in researching the project to the NT Awards ceremony at the Hilton Hotel in Park Lane, London.

‘They didn’t think we were going to win – they said we were just doing ordinary things. But then we won, they flew up in the air! Everyone was hugging them. I was overwhelmed.’

She says the award has ‘opened doors’to progress their work and that there is a possibility that Getting Sorted will be rolled out across Yorkshire and Humberside.

Asthma UK is looking to see if the model is transferable to children with asthma and there is also the chance Liz will be involved in a larger piece of work on diabetes in the future.

Meanwhile, the three young facilitators continue to spread the word. ‘Recently they did a presentation to Diabetes UK, which blew everyone away,’ says Liz. And, in recognition of their efforts, she has split the award winnings between them. ‘If it hadn’t been for them, things wouldn’t have turned out the way they did.’

That outcome, she says, has been to give youngsters the chance to have their voices heard and to feel positive about themselves. But more needs to be done by government to give children the opportunity to manage their own care. ‘If we’re going to look at world-class commissioning then children have to be at the centre of this. They are the experts and an untapped resource.’

Her work, she says, has not been without obstacles. Liz advises that the only way to truly engage children is to support youngsters carrying out the research while maintaining a low-key presence.

‘You also have to persuade other professionals that children are worth listening to. Because young people should be at the centre of everything we do.’

HOW ‘GETTING SORTED’ WORKS

  • The programme features a sequence of four self-care workshops that capture key issues raised by young people living with diabetes

  • The research gives youngsters the chance to share their stories about what it is like to live with their condition

  • It is designed, delivered and evaluated by young people for young people, putting them at the centre of decision-making

  • The approach is based on the principles of self-efficacy, empowerment and engagement, which offer youngsters greater choice over control of their health and healthcare

  • The key objectives of the Getting Sorted workshops are to further develop young people’s understanding of their condition and to manage it in ways that suit them

  • The approach is transferrable to other long-term conditions


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