Children waiting to leave hospital

Recently I visited a children’s hospital where I came across a little girl. She was tiny but said hello confidently. I asked who she was – and was told that she lived at the hospital. She was not too sick to leave, but her parents were unable – or unwilling – to take her home, and social care was not taking on responsibility for her care.

She did not attend nursery. She didn’t leave the ward. Instead of cuddles and a bedtime story with her parents at night, she saw only medical staff.

She inspired this report. I have used my statutory powers as Children’s Commissioner to collect the first data on how many more children like this are in our system.

Her story is one of a total systemic failure and a breach of her rights. And she is not alone.

My data shows that within this generation of children, more than 1,000 children spent over a year in hospital. Those with long hospital stays are disproportionately from deprived backgrounds or from ethnic minorities.

Moreover, many of the children spending long periods of time in hospital are doing so not because they need to, but because safe or appropriate options have not been found for them outside of the ward. Reasons for long stays include delays in setting up care packages, a lack of children’s social care placements, and housing issues.  This is a harrowing thought, particularly when we know that many of the children spending these long periods in hospital have life limiting conditions.

Some of these delays in discharging children from hospital go on for months, even years – and while this is largely acknowledged by those working in the sector, the scale of the problem is unknown. This is because the data mostly isn’t being collected. As a result, neither the government nor the health service knows definitively how many children are waiting in hospital to be discharged, how long they stay for and how many bed days could be saved.

A lack of investment in community services and bottlenecks in the wider system, so crucial for determining children’s outcomes, are leaving children and their families in impossible situations.

For all the attention in the public sphere given to adult hospital waiting times, adult social care, and adult wards, children are rarely mentioned. Until I carried out this research, there was no public record of how many children are admitted to hospital in a year, or how long they are spending in hospital.

As Children’s Commissioner, I visit children’s hospitals and hospices routinely, meeting with patients and the fantastic, inspiring staff caring for them. There is no question that as a country we want the best for our most vulnerable children, but the systems around them are simply not set up to support the realities of their lives. This fails children who want to be able to go to school, spend time with their siblings and friends, who want opportunities to play and be joyful, and fails families who are unable to maintain a livelihood, family time or community connections because they have no support around them.

As a clinician told my team about a family they worked with: “This mum’s two children have virtually had to live in hospital because we’re not able to provide enough support for her to be always at home, or in a safe place that allows them to be out of here. And all mum has wanted to do for her second child is have a better quality of life with her and not constantly be stuck in hospital.”

In short, children are losing out on the innocence of childhood – and parents, instead of getting to just be Mum or Dad enjoying the ordinary, daily moments of family life, are taking on difficult long-term ‘carer’ roles.

And for children without families to advocate for them the situation can be even bleaker – like the little girl I met on that ward, left to navigate her earliest years alone.

Even for those children with loving families, they may live far from the hospital or have other caring responsibilities. Professionals and families both told my team about the importance of play and activities for children living in hospital, but both raised concerns that among the examples of brilliant practice like external trips or in-hospital cinemas, there were many long and empty hours for children on wards.

As one mother told us, “A child is still going to, no matter how sick they are, they’re still going to want to play, they want to learn something”

At its heart, this is a report that shines a light on the often-hidden stories of children whose complex needs and circumstances mean their childhoods are far from ordinary. It is a spotlight on the dedicated professionals fighting every day to give them safety, dignity and the chance to simply be children, and on the families providing care around the clock, intensive care to their children with insufficient support.

It is a report that looks at the choices we face as a country – a country in which advances in science and hospital care have changed the outcomes of many thousands of children who have life-changing illnesses and life-limiting conditions, yet one where a lack of investment in children’s community and social care has left both families and facilities on their knees.

It is the same story we see across children’s services. Children’s social care leaders talk of a severe lack of options to accommodate vulnerable children in their care, forcing them to pay extortionate costs for poor-quality – often illegal – placements. School leaders have told me they are deeply concerned about the gaps in support from wider community services, and deeply concerned that schools are being left to plug those gaps alone.

The question for policy makers to grapple with now is whether we continue to expect families and hospitals to shoulder impossible burdens of care, or whether we build the coordinated, compassionate system children deserve – with investment to match.