From Galaxy House to Governor

Lois was 13 when she was diagnosed with an eating disorder and admitted into Royal Manchester Children’s Hospital in 2017. Since then, she joined the Youth Forum, became the Youth Governor for the Trust and is now studying medicine at the University of Edinburgh.

Lois was 13 years old when she was diagnosed with an eating disorder in 2017. She had been experiencing symptoms for around a year before her condition suddenly deteriorated on a family holiday in Italy. Her parents were frantically googling for resources and services that might help Lois, and they were considering cutting the holiday short.

In her search, Lois’ mum came across the newly formed Manchester and Salford eating disorder service, based just outside of Royal Manchester Children’s Hospital. The service was brand new; they didn’t even have a website when Lois’ mum came across them. She rang the only number she could find, and spoke to someone.

“My mum always used to say that the service was like a guiding light. My parents had just lost it – they had no idea what to do. But she spoke to the service, and they were brilliant, telling her exactly what she needed to do.”

On the advice of the service, Lois came home early from her holiday and was admitted to Royal Manchester Children’s Hospital. She went back and forth between home and the hospital for a few months, struggling to recover. Eventually, it came to a point where it wasn’t safe for her to be at home, so Lois was moved to Galaxy House – an expanding service that treats young people up to the age of eighteen for a range of difficult conditions.

“I was in hospital for fifteen months in the end. When you’re 13, that takes out quite a formative chunk of experience. I think that missing that particular bit of adolescence changes you.”

During Lois’ treatment at Galaxy House, she attended school on site and whilst she still had a fairly standard day timetabled – five lessons a day with a primary focus on English and Maths – it remained very different from her old school. Her appointments and treatment would take priority over her lessons, and her peers were fellow patients.

When she left hospital, Lois had two options for her education: either to attend the Leo Kelly School (a day school that offers short term educational provision) or to go back to her secondary school and complete her GCSEs. Despite having missed half of her GCSE teaching, she opted to return to her secondary school, where she had a huge amount of work to do to catch up.

Despite the support that Lois received from her schools and her circle of friends, she noticed big differences when she was integrating back into teenage life.

“When you have a horrible experience like mine, it makes you grow up quickly. I noticed that I had a completely different life to other people my age, and I sometimes found it hard to connect with the things they cared about. I’d spent so much of my time around adults, so I felt much more comfortable around them.”

When Lois was 14, after seeing a flyer at a bloods appointment, she got involved with the Youth Service’s Youth Forum. The Youth Forum provides young people with an opportunity to discuss the improvements that could be made for the hospitals that could better accommodate young people. The Forum gives young people a voice and a way through which their feedback can be reverberated upwards.

And so Lois went along to her first Youth Forum meeting, where she met Nic Rigby, who leads the Youth Service. She felt as though there needed to be a mindset shift in the children’s hospital; young people needed to be seen differently to children but also differently to adults. Part of her role was to ask the simple questions that other people may not have asked, and to bring a fresh perspective.

“There’s been a really positive impact off the back of the youth forum. The wards’ awareness of different types of patients has improved, which should really benefit patient experience.

We’re also now invited to be part of interview processes when the hospitals are recruiting for senior staff, which we weren’t before. When the new CEO of Royal Manchester Children’s Hospital was interviewed, I was on the panel, and I could ask questions. It’s hard because it takes quite a lot of confidence, but it’s so important that young people can be part of these decisions.”

Lois credits the Youth Forum for opening so many doors for her, including becoming the Youth Governor at our Trust. Being involved has helped Lois to build up a great network and has given her an amazing insight into how hospitals are structured, the complications that arise and the best way to evoke change.

“I couldn’t have done lots of the things that I have done if it weren’t for the Youth Forum and Nic. I could sing her praises all day – she’s relentlessly positive and optimistic, and having that support is so encouraging.”

Further, Lois credits the experience for developing her confidence.

“It’s helped me to effectively challenge people in an environment where I am quite underqualified. I’m not nervous in these situations anymore and I think that’s really valuable because it’s given me confidence to speak up when I don’t think something’s right.”

Lois drew on her experiences with the Youth Forum in her application to study Medicine at the University of Edinburgh. She’s interested in careers in public health and psychiatry, particularly the intersection between healthcare and politics and preventative medicine.

“It sounds so cliché, but when you’ve had a rocky experience it does make you appreciate the very small things. So I also want to get through medical school, get a dog, and live somewhere with lots of nature.”