HealthWatch proposals risk ignoring the voice of child patients

The government has been urged to clarify how new patient involvement structures will hold services to account over provision for young people, or risk marginalising the voice of child patients.

The Health and Social Care Bill, currently going through parliament, sets out plans to establish local and national HealthWatch organisations from April 2012 to gather the views of patients and use their feedback to promote better outcomes in health for children and adults, and in social care for adults.

Local HealthWatch organisations will be funded through councils, as part of their public health remit, and will replace existing Local Involvement Networks (Links) in most areas. But professionals are concerned that child health could be treated as an “add-on” in these arrangements.

Sarah Norman, director of children’s and adult services in Wolverhampton, told CYP Now that HealthWatch should have responsibility for holding children’s social care services to account, as it will do for adults.

“There is still confusion over exactly what HealthWatch’s role is in relation to children’s services,” she said. “Parents of children with disabilities who rely on support from the Aiming High for Disabled Children programme think the distinction between health and social care is artificial. It’s not at all clear what the remit of HealthWatch will be in relation to that programme.”

Norman added that omitting children’s social care from HealthWatch’s remit could have the unintended consequence of making child health seem an “add-on”.

“It’s likely that HealthWatch will be primarily seen as being about adults rather than children if it hasn’t got that holistic approach to children’s health and social care,” she said. “Children can be marginalised in the NHS anyway so if you haven’t got a clear brief for HealthWatch there is a danger that holding children’s services to account could be marginalised.”

Duty to hear from children

Sir Paul Ennals, chief executive of the National Children’s Bureau, said his charity has been lobbying the government to fully include children and young people in HealthWatch arrangements.

“In the past, every Department of Health (DoH) programme for engaging the voice of patients has been very poor at engaging children and young people,” he said. “We’ve been arguing that for HealthWatch to do its job it will have to explicitly seek the views of children and young people, including the most vulnerable.”

Ennals said that the DoH has agreed in principle to the charity’s demands.

“What we don’t yet know is if it will put that into regulations or guidance,” he explained.

“If HealthWatch doesn’t have a specific duty to listen to children, from past experience we know the voice of children will be lost.”

Speaking at a conference last month, David Behan, the DoH’s director general of social care, admitted that initial proposals for HealthWatch had failed to consider how to engage children and young people. But he claimed the pause in the passage of the Health and Social Care Bill gave officials the chance to rectify that. He also urged councils to use their experience of running participation schemes to influence the design.

Norman argued that existing advocacy and user-led organisations are best placed to champion children’s voices. “It’s important that HealthWatch provides a co-ordination role rather than duplicating organisations,” she said. “For example, we need to think how youth parliaments can play a role.”

Ennals added that youth councils, children in care councils and school councils could all provide useful models on which to base HealthWatch’s engagement with young people.

A spokeswoman for the DoH admitted that HealthWatch would need to use different methods to engage children and adults.

“That’s why we’re funding a project to explore effective ways to engage with children,” she said. “Since its establishment last year, this project has already proved invaluable in improving involvement from children and young people, and in the coming year it will be leading on further work to involve this age group in the transition from Links to local HealthWatch.”


    HealthWatch will be the independent consumer champion for the public – locally and nationally – to promote better outcomes in health for children and adults and in social care for adults
    It will use evidence of people’s views and experiences to influence the policy, planning, commissioning and delivery of health and social care
    From April 2012, it will provide information and advice to help people access and make choices about services as well as access independent complaints advocacy
    Local organisations will be funded through local authorities. At least one representative of the local HealthWatch will sit on the council’s health and wellbeing board