Lack of complex care services means children are living in hospitals

Complex care support services are unavailable for some of the country’s most-vulnerable children causing delays in hospital discharges, says Children’s Commissioner, Dame Rachel de Souza.

In a recently-released report entitled Children Waiting to Leave Hospital, she is calling on the Government to decide ‘whether we continue with a system in which the most-vulnerable children fall through the gaps, or we build the co-ordinated, compassionate system children deserve – with investment to match’.

In her analysis of NHS England data on the length of time children spend in hospital she has, for the first time, identified the system barriers delaying the discharge of children from hospital.

And the worrying report reveals that adequate support cannot be found in the community to enable children with complex medical needs who may have life limiting conditions to have all the joys of growing up.

At the most-acute end of this crisis are children who are being left waiting to leave hospital, some for months and some for years, because they are in care and need a specialist placement.

And, in all the four hospitals which shared data with the team in June last year, all had children in hospital waiting for a social care placement.

The analysis found 70,000 spent two months or more in hospital while 1,300 were there for more than a year.

Children with complex medical needs are now living longer and being supported to have a better quality of life thanks to medical advancements. This should be celebrated. However, what I found in my recent report is that adequate support cannot be found in the community

More than double the proportion of children from the most-deprived backgrounds are also spending more than three weeks in hospital - compared to the least-deprived youngsters. And those from ethnic minority backgrounds are also more likely to be left in limbo.

Dame Rachel said: “Throughout my time as Commissioner, I have met children across the country who speak to me about what they love, what they want from life, and the challenges they face. I have met children who have experienced severe adversity, witnessed terrible crimes, or who have been failed by the systems that are meant to protect them.

“I thought I had seen it all. I didn’t think there was anything left to shock me when it comes to the experiences of some children in this country. But, recently, I met a little girl who had not had a childhood at all. She was growing up in hospital, living there with no home, family or community around her. No trips outdoors, no fresh air, no-one to tuck her into bed at night.

“I was introduced to her by staff who were dedicated to her care and wellbeing – but knew she was not getting the life she so deserved.

“As a child with complex medical needs, her care at home will be different to other children – but this should never be a reason for her to lose out on a childhood her peers will have.

“And yet this is a reality for a number of children in care who need specialist foster placements or residential care. Children with complex medical needs are now living longer and being supported to have a better quality of life thanks to medical advancements. This should be celebrated.

“However, what I found in my recent report is that adequate support cannot be found in the community.

“This is not something that we can bury our heads in the sand about.”

She added that while many hospital wards have activities or play workers engaging with children, it was common for children to spend long, empty hours on the ward.

And, for those without family around them, this can be an isolating and strange experience and have a deeply-profound impact on their development and future life.

In the report Dame Rachel calls for a ‘radical rethink’ of community complex care services to better support young people.

“Instead of fragmented, inconsistent commissioning across systems, where children can be caught in the middle of funding disputes, we need the Department of Health and Social Care and Department for Education to develop a joint commissioning framework for ICBs, local authorities and schools to make sure the commissioning of places regionally is flexible”, she added.

We are determined to break the cycle of crisis too many children face and are also investing £560m to reform children’s social care, expanding and refurbishing children’s homes across the country so vulnerable children can be placed in the right setting for their needs 

“Instead of long waits for care packages to support children at home – whether with their families or foster carers – we need a national strategy from the Department of Health and Social Care and Department for Education for improving children’s homecare services.

“And, instead of a lack of residential and foster care placements for children with complex medical needs, the Government should establish a joint statutory fund for placements for children who need them. This needs to be delivered through the recently-established Regional Care Cooperatives with Integrated Care Boards as part of the commissioning structure.”

Responding to her findings, Dr David Vickers, chair of the British Association for Community Child Health (BACCH), said: This report makes sad reading. It cannot be right for children to be in hospital for longer than medically necessary.

“The commissioner highlights the lack of resources in community services and the hospice sector as one of the problems. BACCH, as the voice of community paediatricians, calls on the Government to ensure that children can be discharged to their homes secure in the knowledge there are effective and adequately-resourced community health services to support them.”

Promising to take the recommendations on board, a government spokesperson said: “Every child deserves the chance to grow up surrounded by family, friends and the everyday moments of childhood – not stuck in a hospital ward when they don't need to be there.

“This government has made the biggest investment in hospices in a generation – including £80m over three years for children's and young people's hospices – so that seriously-ill children can access compassionate, high-quality care closer to home.

“We are determined to break the cycle of crisis too many children face and are also investing £560m to reform children’s social care, expanding and refurbishing children’s homes across the country so vulnerable children can be placed in the right setting for their needs.”