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. Her family, for multiple reasons, were unable to care for her at home, so without a social care placement that could support her needs, she was left in limbo for years.
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, ‘Children waiting to leave hospital’, is 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 – family, friendship, play, community and learning.
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 they need a specialist placement.
In all the four hospitals that shared data with my team in June last year, all had children in hospital waiting for a social care placement.
This is not something that we can bury our heads in the sand about.
Hospitals are unusual environments. Hospital staff dedicated to children’s care change every shift and are spread across multiple children. The surroundings are often loud and busy. Days are unpredictable. Wards are full of other families, unknown people, also suffering through pain and experiencing traumatic moments. There is the additional risk of children becoming more unwell from infections that spread across hospitals. For children who are immunosuppressed, they may need to be isolated to protect them from illness.
As one professional working in specialist long-term ventilation told my office: “We’re on the ground floor with barely [any] natural light, because it’s just buildings all around, they haven’t got access to a playroom because they’ve all got flu.”
Although many hospital wards have activities or play workers engaging with children, my office was told how common it is for children to spend long, empty hours on the ward:
“So come there Wednesday afternoon onwards for the rest of the week, the weekend, absolutely nothing happens.” – Complex Care Lead Nurse
For children without family around them, this can be an isolating and strange experience. This will have a deeply profound impact on their development and their future life.
Support for this group of children needs to be radically rethought. We need greater focus on the care and support children need in the community – and to bring our health, social care and education services into alignment with the needs of some of the most vulnerable children.
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.
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.
The question I am putting to policy makers is whether we continue with a system in which the most vulnerable children fall through the gaps, or we build the coordinated, compassionate system children deserve – with investment to match.
