A Forgotten Crisis: Adults who have been in Care Struggling with Poor Health and High Mortality

A Forgotten CrisisAdults who have been in Care Struggling with Poor Health and High Mortality

Research has shown that children who grow up in care and endure adverse childhood experiences could be more vulnerable to long-term health issues such as auto-immune diseases

People who spent their childhoods in the UK’s care system are twice as likely to die prematurely, according to a shocking new report.

The University College London study revealed how thousands of care-experienced people have died prematurely over the past 40 years, with the majority of the premature deaths attributed to cases of self harm and accidents.

At the same time, care-experienced people are more likely to have endured Adverse Childhood Experiences (ACEs) and be at greater risk of long-term health conditions such as pulmonary disease, cancer, liver disease and autoimmune diseases.

ACEs occur when a child’s brain is still developing. Frequent exposure to highly stressful experiences at this crucial time can result in long-lasting, negative impacts both mentally and physically. If left untreated, people with a high ACE score face a 20-year decrease in life expectancy.

This could explain why care-experienced people in the UK are at an increased risk of a premature death. But there is a worrying gap in research on care and health outcomes. 

“We don’t know these answers, and that is because no one’s ever asked,” says Lisa Cherry, a doctoral student at the University of Oxford. “Other than to highlight poor outcomes statistics, such as the involvement with criminal justice, mental health, and homelessness, there really is a gaping hole in research when it comes to this topic. It’s like the concern and care that researchers have around children in care vanishes once those children get to 18.”

The Government is currently reviewing children’s social care in England, having promised in its 2019 manifesto to overhaul the system. So far, the review has produced an interim report, while the Competitions and Market Authority has published its own review into private interests in the sector. The latter comes at a moment when corporate interests in health and social care have led to private equity firms promoting the ‘market’ as having “favourable demographics” – treating vulnerable children as investment opportunities. 

The Government has also changed the rules to only guarantee care to children up to the age of 16 – a policy that has been much-criticised by care leavers and campaigners. 

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‘Hard-Hitting Research’

Between 1971 and 2001, the general population’s mortality rate decreased due to an advancement in health research. However, for care-experienced people the opposite was true: those who had been through the care system saw an increase in their mortality rate. 

Josh MacAlister, chair of the Independent Review of Children’s Social Care in England, told Byline Times that “emerging evidence on the long-term health outcomes for care-experienced people has been some of the most hard-hitting research the review has seen”.

Where reports on long-term health outcomes exist, they often do not address care-experienced people specifically. This leaves researchers and policy-makers to draw their own conclusions without definitive evidence.

A 2017 report by the Care Leavers Association, funded by the Department of Health and Social Care, found that existing research was fragmented and called on experts to “stop looking at the care system in silos and instead focus on the journey of a whole life and how everything joins and fits together”.

This appeared to be a step in the right direction. However, members of the project have since reported that the work has not been referenced in later care leaver projects by the Government.

Claire Thomas, a doctoral student at the University of Southampton researching the long-term impacts of ACEs on care-experienced people, told Byline Times that she is frustrated by the lack of interest and action when it comes to recognising ACEs associated with care, and the impact of trauma on physical health. 

“A green paper which proposed that childhood adversity and trauma-informed approaches be made into a national strategy in England a few years back was shelved,” Thomas said. “It’s only because of the pandemic that childhood trauma has been brought to the front again by the relevant Government departments.”

Thomas is care-experienced herself and lives with anxiety and post-traumatic stress disorder. Her relevant medications cost an average of £30 a month, not including private counselling.

“If, as the research suggests, care-experienced people do have higher ACE scores, which subsequently affects their long-term physical and mental health, I would want to see an ‘opt-in’ medical exemption certificate for care leavers, so they could access free prescriptions regardless of age,” she said.

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Discrimination and Health Outcomes

Care leavers can often experience discrimination from both the state and from other people. They may face stigma or structural barriers that can have a long-term impact on their health. 

Examples include demonstrations against the building of children’s homes, and the recent exposure of prejudicial pregnancy assessment practices in the NHS.

A study by the University of California, Los Angeles has now revealed that young adults who experience discrimination have a higher risk for both short and long-term behavioural and mental health problems. Those like care-experienced children who may have endured multiple successive years of high-frequency discrimination demonstrated a much more pronounced, cumulative risk for mental illness, psychological distress, drug use and worse overall health.

“I would suggest that care experience be seen as a ‘protected characteristic’ as per the Equality Act,” Claire Thomas said. 

The 10-year study also showed that people who experienced any amount of discrimination had a 26% greater risk for poor health than those who had lived free from prejudice or stigma.

Cherry, a speaker on trauma recovery and resilience, told Byline Times that she wants these recent statistics to be a “call to action” for other researchers and policy-makers.

“In order to work out how we can help care-experienced people with their long-term health, we need to understand what things work for people who do recover,” she said. “For those who do, what does that recovery look like? What’s that trajectory?”

Cherry is concerned, however, that those responding to the call to action won’t be able to make an impact until the narrative of the care system has changed. 

“Local authorities are still receiving children into care as a need of a bed, rather than as a need of a therapeutic intervention,” she said. “Until this changes, we will still find ourselves a million miles away from thinking about how we can prevent poor mental and physical health for care leavers in adulthood.”