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© Brea Souders at East Photographic


© Brea Souders at East Photographic

Researcher Áine Kelly is using her experience of growing up in care to help others in the system. What role does first-hand experience have in expertise, and how important is it in making health and social care better? Michael Regnier explores a new kind of expert.

At a conference in September 2016, Áine Kelly was telling a group of academics about her work. She is studying for a PhD at the University of Oxford, where she focuses on the health experiences of children and young people in care. But when she happened to mention that her interest had started because she herself had grown up in care, the tone of the conversation changed.

The respect given to a fellow academic instantly evaporated and she found herself being talked down to. One of them asked her if she thought extra allowances had been made for her to get into Oxford. She laughs now, but this exchange still rankles. Why should anyone think that experience of the care system makes a person any less able to study it? And, more importantly, to change it for the better?

Yet, historically, the very people who know most about the system from the inside have been denied a voice when it comes to making sure it is as good as it can be. Instead, other experts – medical, legal, political – have been given much more power. Things are changing, though, as service providers are realising that they just don’t have the full range of expertise unless they genuinely involve people with direct experience of using their services. This is not just in social care, either. Members of the public, including carers and patients, are being included in research and reform in all kinds of health areas, right from the start.

In many ways, Áine Kelly is a living example of this combination of expertise and experience. But as she has discovered, some people still struggle to acknowledge the benefit it brings.

© Brea Souders at East Photographic

Áine was seven years old when the police arrived at her house, suspecting she was being abused by her parents. They escorted her and her mum to a children’s hospital, where she was examined. As she has described on her blog, every bruise, burn and cut on her body was counted, measured and photographed. Various adults were asking how she had got these injuries. With her mother standing right there, she was too scared to say. But the evidence was stark. She was taken into emergency foster care straight away.

Many people who have grown up in care in the UK will say that they “survived the system”. Áine says she survived because of the system. Until she was six, she hadn’t known that her life of neglect and abuse was not normal. She lived in a three-bedroom house in the south of England with her mum, stepdad and two younger sisters. The youngest was still a baby, but Áine took care of her other sister, who had severe epilepsy and complex medical needs.

“I would give her her medicine, give her a bath, put her to bed,” she says. “And I was always very protective over her, so if I could see my mum and stepdad were going to argue, I would make sure she was out of the way and I would take the punishment.

“We were quite badly neglected, and I was badly physically abused and emotionally abused. If I was caught getting a drink of water, I’d be beaten for it. I wasn’t allowed to sleep at night – they would make me stand in a corner with my legs apart and my hands on my head, and if you’re found to be asleep in the morning, you’d be beaten or locked in the shed.”

Áine was even caught stealing food from school to take home, because she was scared that she and her sister would have died of hunger otherwise.

Then, one Christmas, Áine’s parents asked the local authority to take her into respite care for a short time. They told her it was a punishment for her bad behaviour, but it turned out to be an unintended gift. She spent two weeks with a foster family who showed her that she was not the naughty child her parents always said she was. For a few precious days, she was able to play with the family, joining in their games and festivities. It gave her an idea of what life could – should – be like for her and her sister. “Having days out, having proper family meals and sitting down, asking each other how the day’s gone. Simple things.”

© Brea Souders at East Photographic

Back with her parents, Áine had a psychological assessment. She remembers thinking that this would be an opportunity to tell someone what was going on. But her mum had told her that she would be able to hear everything Áine said, even if she wasn’t in the same room. So Áine played at happy families for the psychologist’s sake.

The only means she had to communicate the truth was through dolls. Áine’s recollections of her childhood are supported by her case files, which she requested a few years ago. The psychologist’s report from that day notes:

[Áine] was given some unstructured free play time with the dolls house in which she, first of all, depicted a scene where the father and a child went shopping whilst mother and the other two siblings stayed at home. Father brought a lot of shopping back home which pleased the family. But then the eldest sibling pinched the baby and was subsequently beaten up by every member of the family and thrown down the stairs. Following this, she was sent to her bed as an additional punishment. The beating up of the eldest sibling was repeated before she was forgiven and could re-join the family...

The fact that [Áine] did not wish to discuss the meaning of her play with me reinforces the earlier interpretation that these negative feelings are too threatening to acknowledge on a conscious level.

Áine doesn’t blame the professional for misinterpreting her unwillingness to speak as being psychological rather than the direct result of her mother’s threats. But today she puts her efforts into making sure that children in care can always have their say in her research, and beyond. “When you’re in care, you don’t really have a voice over anything that happens to you."

There are around 70,000 children living in care in England today. Statutory guidelines say that a child in care should have a health assessment every six months if they are under five, and every 12 months if they are older. From the young person’s perspective, this can be an unwanted and unnecessary intrusion into their lives. Áine remembers the “weird things you don’t want to do”, such as stripping down to her underwear and standing on one leg. She stopped going for them when she was 11 (young people are within their rights not to consent to an assessment, but not many of them know that).

“[It] all builds up to the point where you don’t trust any health professionals,” she says. “I just wanted to be normal. I think what people don’t realise is how many professionals are involved. You have to see hundreds of them.”

Health assessments can feel particularly pointless to some young people in care, because they feel healthy enough. A recent survey by Coram Voice, a charity that supports children receiving social care services, found that 83 per cent of children in care would say they are better off than when they were at home. Áine thinks that having a routine, regular meals and a set bedtime, be that in residential or foster care, gives children a structure that makes them feel physically healthier, too.

© Brea Souders at East Photographic

Except there is evidence that children in care have worse physical and mental health than those who are not. A small study in Surrey, in south-east England, published in 2004, found that the healthcare needs of children in care were not only higher, but also often unmet or poorly managed. As a group, the children in care seemed in particular to have a lot of asthma, developmental delays and emotional and behavioural problems.

But for all the efforts, there is a lack of data. In the Surrey sample, one-third of children had not had a health assessment in the past 12 months, while the information that’s gathered during assessments that do happen is rather limited, according to Áine. “What is the actual health status of children in care and care leavers? We don’t know.”

Statutory guidelines for promoting the health and wellbeing of children in care are framed in terms of ‘corporate parenting’ – the duties and responsibilities of the state to the child – and acknowledge the greater significance of health issues, particularly mental health, for children in care. The stated aim is to put the child at the centre of the process, getting their consent and making sure they understand what is going on in terms of their healthcare. In practice, there are still challenges in linking up local authorities’ services with the NHS.

In her research, therefore, Áine is collating what data there is from health assessments and doing as much to understand it as possible. She’s exploring which factors make a young person more or less likely to consent to a health assessment. She’s also looking at whether the forms that are used could be tailored to the children more, and what their experience of healthcare is actually like. It’s vital work, because these experiences influence what happens to people’s health after they leave care as well.

A three-year project on the healthcare needs of older adolescents in care and care leavers of all ages is due to report this summer. Jakeb Braden, a health development worker at the Care Leavers’ Association, which has led the work, says its results will show that not enough is being done in terms of care support, and suggests it may be necessary to make care leavers a higher priority within the healthcare system.

“There needs to be support for everyone to do what they want with their lives. And underpinning all that is mental health. If you’re depressed, anxious and isolated, that’s not going to happen.”

It’s understandable that mental health is a priority – anyone who experiences trauma from an early age is likely to need support as they grow up, although a lack of resources means not everyone does receive help. But the focus on mental health may mean that physical health needs have been inadvertently underestimated or overlooked.

Jakeb says people are usually at their most vulnerable when they transition from care to independent living. Unless you stay in foster care or education, state care ends when you reach 18. But if the state is acting as a parent to young people in care, is it right that it just stops at a certain point?

Not having a go-to person to talk to often leads to problems with eye care and dentistry, he explains. “People can’t afford to go, or don’t know how to get a dentist appointment.” A lot of younger care leavers end up at A&E for minor problems like flu, he adds, because they don’t know when to go to their GP for help, or even how to register with one.

“There’s growing recognition that the state is a corporate parent and these parenting duties should last a lifetime,” he says. “Parenting never stops."

When she is interviewing young people in care for her research, Áine says she won’t tell them about her own experiences. But, she says if they want to ask her any questions at the end, she will be happy to answer them.

“How many of them have questions?” I ask.

“All of them,” she replies.

They ask her about dealing with negative stereotypes, and whether people think she is stupid because she grew up in care. “One of them asked if I thought she was clever enough to go to university.”

The same question was in Áine’s mind at every stage of her route to university, a Master’s and a PhD: ‘Am I clever enough?’ Having struggled at school, she was convinced the answer was no. But if she learned nothing else from a childhood of constantly moving from place to place (she says she has lost count of how many people she lived with after leaving her parents, but reckons it was at least 30), she learned to rely on herself and not give up.

When she finally got to university to study applied psychology and sociology, her academic skills started to bloom, and she discovered that she was good at things that other people struggled with. But it was still far from easy.

She had to work long hours to support herself financially, and found the academic work challenging, too, although less so once she had been diagnosed with dyslexia (after submitting an essay on naturism instead of nativism). But it was all worth it. She would find herself listening to lectures thinking, “Oh, that sits with my experience, actually”, and then she would go away and read more on the topic later. “I read one paper that said because I was abused, I’m gonna die ten years earlier,” she says, chuckling drily.

Learning about psychology enabled Áine to reflect on her past, and to understand some of the behaviour she experienced – not least her own. For example, there had been a point where Áine had run away from foster care and gone back home. She later realised that this happened because she had been so desperate to have a normal parent–child relationship.

After a couple of weeks, the abuse had started again, but her mum and stepdad wouldn’t let her leave. It was another year before she got the chance to run away again, during which time she was self-harming and thinking about suicide. What stopped her was the thought of her sister.

© Brea Souders at East Photographic

Her sister’s complex medical needs had meant they were separated when they went into care. Unlike Áine, her sister maintained contact with their mum and actually idolised her, which was hard for Áine, “but you have to promote that relationship”. Áine still had that vision of a happy life for the two of them, and she worried about who would look out for her sister if she wasn’t around. But keeping in touch with her sister and going to her hospital appointments meant that she couldn’t sever all contact with the rest of her family.

On more than one occasion, Áine’s birth mum tried to track down where she was living. In 2012, she turned up at the university and assaulted Áine. Having been warned not to come back onto the campus, she later managed to find Áine’s phone number and would leave threatening messages and texts. Áine went to the police, but all they could advise was that she think about changing her name. She resented the idea of giving up the only constant in her life because of her mother’s actions.

At around the same time, Áine’s own health had been deteriorating. Her sister had been put on life support, and Áine was travelling up and down the country to visit her every day. It took a toll: “I couldn’t laugh, couldn’t be happy, couldn’t cry. I was falling asleep all the time. And I just didn’t understand how the health system worked.” Every time she went to see a GP, they would suggest she was depressed, or that growing up in care was catching up with her.

At last she found a doctor who listened more closely to what she was saying. “And she said, ‘Ooh, I think you’ve got something quite rare called narcolepsy.’” The diagnosis was confirmed in 2011, and with the help of this GP, the local designated looked-after children’s nurse and her old social worker, she was eventually able to get treatment and bring it under control.

Áine now has two doctors who she trusts – her current GP and her neurologist. She jokes that they are never allowed to retire because she is able to ask them questions that no one else ever answered for her. Simple things, like what constitutes a healthy diet.

“It was only because I was confident enough to go to the GP and ask a question like that that she sent me to a dietician, who actually sat me down and explained what everything does and the different foods you need to eat.”

Again, this is part of the challenge around helping young people transition to independence and care for themselves as young adults. How well people manage with issues like eating healthily and using adult healthcare services was something Áine wanted to explore further as she embarked on a fully fledged research career.

First, though, she reluctantly decided to change her name. She deliberately chose something unusual, and, to her surprise, when she filled out the forms and got her new name, it had a huge positive effect. “I felt like I got rid of the child-in-care version of me – someone who felt worthless, unloved and unwanted. I saw my new name as my professional name – someone who could use their experiences in a positive way.”

Her increasingly expert understanding of psychology, and attachment theory in particular, helped Áine move on. She began to view her parents’ actions in terms of the neglect and abuse they each suffered growing up. But perhaps the biggest help was that she was finally able to articulate her experiences.

“At seven, I wouldn’t have been able to say, ‘My mum threw me down the stairs,’ or, ‘My mum gives me my sister’s medication,’” she says. “If you haven’t got the words to describe what’s happened and you can’t tell someone and you can’t write it down, how do you then get it out of your head?”

Although she admits there are still some things she hasn’t told anyone, Áine is able to enjoy her life. She’s not haunted by the abuse or the years of ever-changing foster families. She has been able to reflect and deal with it all, at least in part because of her education. “I don’t know where I’d be if I hadn’t gone to university,” she says.

© Brea Souders at East Photographic

In the office that she shares as a PhD student at the Rees Centre for Research in Fostering and Education at the University of Oxford, Áine takes off her shoes and puts on a pair of slippers. Around the walls hang life-size paper figures, decorated by young people during her research interviews.

For this part of her research, she gives each young person a camera and sends them off for a couple of weeks to collect material for a collage about their experience of health. Then they make the collage while Áine talks to them about what it means to be healthy and whether they think they’re healthy or not. Remembering her own annoyance if professionals cried when she spoke about her experiences as a child, she trained herself not to cry in these interviews by watching lots of sad films first.

She points out one collage, which has twigs stuck to the feet, “Be safe” written on one hand and “Be happy” near the left knee. “This girl, her interview was four and a half hours and she spent a lot of time just doodling and just talking. I barely had to ask questions.

“I find it really helps, because obviously given their past experiences they’re not always that trusting,” she says. It also takes away the pressure of a standard interview where there’s someone in power and someone not, and removes the need for eye contact. “Also,” she adds, “they say it’s fun.”

Generally, the young people feel they are pretty healthy. Áine thinks they genuinely believe that, even though it often later comes out that they are living with certain conditions, such as chronic pain or eating issues or asthma. If a condition is under control, the young people don’t count it as a health issue. It’s possible, then, that such issues don’t get discussed during the regular health assessments either – so we may have a very poor understanding of these children’s health.

Ultimately, Áine is gathering information so that she can make informed recommendations to policy makers about how to improve the care system. She’s not the only person doing this, nor the only care leaver working in this area. At the Care Leavers’ Association, for example, every member of staff has to have experience of being in care. “You can’t truly understand what it’s like growing up in the care system unless you lived it yourself,” says Jakeb Braden.

Áine certainly finds her own experience has advantages when it comes to doing research, but not because the experience of care is the same for everyone. She tells the young people she works with that they are “experts by experience”, yet she hesitates to call herself an expert precisely because everyone’s experiences are different, “no matter what the similarities are”.

Rather than relying only on her experiences, she has an advisory panel of 15 or so young people in care. She is keen that they become “mini-researchers”, whether that’s by helping to analyse data or using other skills to support the project. “I think if they feel valued and that they’re actually contributing to something, then most young people from care will want to help improve the service in some way.”

Involving service users in research and reform has been on the increase over the past couple of decades. Martin Lodemore, a senior adviser at INVOLVE, which is funded by the UK’s National Institute of Health Research to promote involvement in health and social care research, says that this trend has been driven by the desire to improve services. In some cases, the level to which the public are involved has reached such depth that it has become ‘co-production’.

“Social care led on co-production, embedding it in research,” he explains. And what exactly is co-production? “The simplest way I can describe it is: working with members of the public to actively involve them in research from the very start. Then they are involved at every stage.” This includes working out what research questions to ask, identifying and prioritising topics, designing research, analysing results, and disseminating and implementing the findings. It can be challenging, especially when involving people before a research project has funding, but it is worth it.

“There is real value in bringing different types of expertise together,” says Lodemore. It keeps researchers from losing sight of the big picture – helping the people using a particular service, such as the care system – as well as making it easier to recruit and retain participants, and often keeps the language used to describe the research more user-friendly.

Áine has experience of being involved like this herself. She sits on the BMJ’s patient panel, which promotes co-production in the research it publishes and invites patients, their carers and advocates to comment on articles alongside peer review. Áine draws on her experiences with her sister, who died in 2016, as well as her own health.

Her perspective is also coloured by an earlier experience as a ‘lay member’ on a committee intended to create guidelines relevant to children in care. She felt the ‘experts’ were treated very differently to the lay members – the former met to decide the remit of the committee before the others were allowed to join. When she was the only person to have grown up in care to be present in a meeting, Áine was frustrated by the tendency to take her experience as a fact, rather than just one experience.

If people work together as a team – acknowledging that each member brings their own expertise – improvements could be achieved more quickly than by ‘experts’ working alone. “When you apply someone’s experience of something to their body of knowledge about something,” explains Áine, “then it is so much more valuable, because they are able to think about all the ‘minor’ details that other people might not even recognise as important. That’s why it is so important for people to work with those who have experience of whatever it is they have knowledge about.

“It is definitely something that is starting to be recognised in the world of health and healthcare. But I think there is quite a way to go before professionals truly recognise the importance of experience and stop seeing it as a tick-box exercise."

At 3.30pm on Tuesday 28 March 2017, a group of peers, at least one Member of Parliament and assorted experts file into a committee room in the UK’s House of Lords. They have come for the inaugural meeting of the All-Party Parliamentary Group on Young People’s Health. Áine Kelly is there. Whether she’s there as a care leaver, an adviser to the Association for Young People’s Health, or a young academic working in this area doesn’t really matter – she brings with her all these different types of expertise.

At the end of the meeting, she goes straight up to the MP, Kelly Tolhurst, who has mentioned her work with looked-after children in her constituency in Kent. Áine secures an invitation to set up a meeting, and leaves, pleased to have extended her network yet again.

Áine, of course, can never separate her lived experience from her academic expertise. But would she want to? She does think it has advantages, especially when dealing directly with young people currently in care. She jokes that we need a new category for her and others like her who are both service users and academic researchers. I don’t think she really worries about labels, however, just the work – and her motivation to help make the care system better looks set to last a lifetime.

“What could be more rewarding than improving the experiences of people who’ve had a bad start in life?” she says.

In the UK and Republic of Ireland, the Samaritans can be contacted on 116 123. In the USA, the National Suicide Prevention Lifeline is 1-800-273-TALK.

Áine has a doctoral scholarship from Wellcome, which publishes Mosaic.

Wellcome is debating the role and public perception of experts and expertise. Join in the conversation on social media using #expertdebate.

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