Youth Service ensures young patients voices are heard

The Manchester University NHS Foundation Trust Youth Service at Royal Manchester Children’s Hospital was launched in March 2022. It supports young people with long-term health conditions transition into adult services.

Our pioneering Youth Service is the only one of its kind in the North West and is funded entirely by charitable support.

Launched in March 2022, the Manchester University NHS Foundation Trust Youth Service at Royal Manchester Children’s Hospital supports young people with long-term health conditions who are transitioning into adult services.

Young people accessing the service can range in age from 11 to 25 years old. Each has their own individualised care plan and time with the Youth Service team, depending on their needs.

Youth Workers act as a voice for the young person and support them through their transitioning period and act as their advocate. And the support they receive is not solely intended for their hospital care – it can be extended to home life too.

Meet the Youth Service Manager

Nic Rigby was employed at Royal Manchester Children’s Hospital for seven years, previously working with patients with cancer. Now, she is the Youth Service Manager to a team of Youth Workers with different specialisms.

Nic said: “Young people deserve to be listened to and have their voice heard and as Youth Workers we can act as an advocate. In turn, this ensures that young person is heard by medical professionals during consultations or appointments.

“It can be quite daunting sitting in front of a consultant and them asking questions but having the opportunity to talk to the Youth Worker about what’s going on and the things they may be worried about can really help. The Youth Worker can act as the voice for that young person and that makes a real difference.

“We make a real difference to the young people treated at our children’s hospital by gaining their trust and supporting them with everything going on in their life – both in and outside of hospital. Some young people may have a lot going on and find it hard to focus on their treatment and their long-term health condition. At the Youth Service, we can break that all down, offering support and an action plan to help them manage their treatment in a way that feels comfortable to them as an individual.

“I think all young people with a long-term health condition deserve the support of a Youth Worker and I think that would make a massive difference.”

Toriay’s Story

Toriay has sickle cell anaemia which often leaves her feeling tired. Migraines affect her everyday life and her condition means she has regular hospital appointments for treatment and blood transfusions. Sometimes she will miss school or socialising with friends due to her illness.

Having been treated at Royal Manchester Children’s Hospital since she was born, Toriay was understandably apprehensive about transitioning to adult services. She was nervous about moving to a new hospital and meeting new people but was grateful to have her Youth Service Worker Teresa (Tee) with her to support with the transition.

At her first appointment, Tee met with Toriay and took her on a tour of the adult sickle cell service. She was introduced to her new doctors and nurses who would be involved in her ongoing care and Tee made sure Toriay felt comfortable throughout.

Soon, Toriay was feeling more confident and was able to attend appointments on her own. She said: “It’s important for young adults and teens to have that support network and feel like they can talk to somebody, ask them questions about their health and support them through the hospital.”

In addition to the transition service, all young people at the hospital can access the team’s youth club which opened in November 2022. The Youth Service also organises away days for activities including escape rooms, trips to popular restaurants and adventure activities, offering an opportunity for these young people to meet like-minded individuals going through a similar experience.

While the Service is available to young people who are transitioning to an adult hospital outside our Trust, there is a benefit of being part of a family of 10 NHS hospitals and community services here in Manchester, with many of our hospitals under the same roof. Youth Workers work across our hospitals to support young people. Many of the hospitals under our Trust already work together and have built strong connections in the services we provide as well as cross-working.

Sameer’s Story

For Sameer, Royal Manchester Children’s Hospital is familiar place. He’s been in the hospital on and off while receiving treatment for a bone infection, for up to seven months at a time.

Aside from the difficulty of dealing with illness, young people spending a long time in hospital miss out on crucial experiences as they grow up. These are the vital experiences that make us who we are. They give us confidence. They help us build interpersonal skills. They teach us life lessons that we carry with us.

Our patients can’t have these experiences when they’re in hospital for months on end. Their treatment keeps them removed from the rest of the world. That’s why it’s so important that we have this Youth Service, so we can give young people the experiences and opportunities they need to flourish and thrive.

Lois’s Story

Lois was in hospital for an extended period of time as a teenager. She was diagnosed with an eating disorder at 13, and spent 15 months being treated in hospital before returning home. Her time in hospital and away from that of an everyday life as a teenager had such an impact on her that it inspired her future.

Lois joined our Youth Forum – a space that gives our young patients a platform to discuss and work to better accommodate the needs of young people in our Hospitals. A regular at Youth Forum, she went on to be nominated as Youth Governor and represent the interests of young people in our Hospitals at Trust members meetings with the Board of Directors. Alongside this, Lois is a medical student at the University of Edinburgh and plans to pursue a career in health policy.

Lois’s journey is a perfect example of the kind of impact that Youth Service intervention can have on young people whose lives have been disrupted by long term health conditions. She is living proof that when these young people receive support and opportunities they need, there are no limits to their success.

Ayyub’s Story

“I was fifteen years old when I became ill, I should have been revising for my GCSE’s and hanging out with friends. Instead, it felt like my life had been put on complete standstill, there were times where I questioned what I did to deserve this and why it had happened to me.”

After a sudden illness left Ayyub paralysed from the neck down, he has been living in hospital for almost two years. In February 2024, Ayyub was admitted to RMCH after experiencing a sharp stomach pain and there, he spent three months ventilated on the Intensive Care Unit.

In just a matter of hours, he was diagnosed with acute flaccid myelitis, a rare condition which affects the spinal cord and left him paralysed from the neck down. The condition also caused a collapsed lung and resulted in a loss of bladder and bowel control.

Although Ayyub regained some movement in his arms, his legs, bladder, and bowel remain paralysed. He underwent a tracheostomy in May 2024 to support his breathing and remained on ventilation for five months until its removal that October.

With help from the Youth Service, Ayyub regained the confidence he had lost. The Youth Service not only supported him throughout his specialist rehabilitation, but they helped him to reclaim his agency and independence, allowing him to go back to secondary school in time to finish with his peers and even go on to study in college. Now, Ayyub talks about his plans to open a wheelchair-accessible gym and dreams of becoming a professional wheelchair basketballer.

If you would like to help us support young people in their patient journey via the Youth Service, you can donate below.