Group gives young Fylde coast patients a powerful voice

Victoria's Voice members and junior doctors at Blackpool Victoria Hospital

Victoria’s Voice members and junior doctors at Blackpool Victoria Hospital

Junior doctors gained a quirky insight into what it’s like to be a young patient during a special event at Blackpool Victoria Hospital.

They made pledges, played games, shared ideas and took part in discussions with young people from the Trust’s Victoria’s Voice Youth Forum on Friday, August 5.

Victoria’s Voice is a group of young people aged 11 to 16 who have all experienced care within the Trust.

They encouraged the junior doctors to see things from a child’s perspective and challenged preconceptions about what is in the best interests of young people.

Special guests at the session were Zoe and Paul Bojelian from Yorkshire whose son, Adam Bojelian, had cerebral palsy and fought to improve communication between medical staff and young people.

Adam, who communicated through blinking, won national awards for his poetry and raised awareness through his Twitter profile – @Adsthepoet. Sadly, Adam died in 2015 but he left an incredible legacy of poetry and activism. Zoe, who sits on the NICE (National Institute of Clinical Excellence) End of Life Care for Children’s Guidelines Committee, continues to campaign for better communication and care for children.

Zoe and Paul Bojelian at Blackpool Victoria Hospital

Zoe and Paul Bojelian at Blackpool Victoria Hospital

Connor Jebb, 12, from Blackpool, one of the young ambassadors from Victoria’s Voice, said: “I was very impressed with the way the junior doctors took part in the activities.

“It’s important that they know how to talk to us. It was fun to work with them.

“We meet every month and we talk about things we’ve experienced. At our last meeting we picked questions for consultants to answer in interviews.

“If something is created specifically for children we see if it’s good or bad, or if it needs changing. It’s nice to have a say.”

Katie Burrell, 19, from Poulton who is on a gap year and previously attended Blackpool Sixth Form College, said: “I have got involved with Victoria’s Voice because I’m starting at medical school and I wanted to get involved with something different.

“We get to learn a lot about how doctors can get stuck in their ways. Events like this demonstrate the importance of listening to young people.

“I want to help to improve services for young people. It’s interesting to hear different views. I think it’s important for medical staff to review things they have learned. Sometimes it’s good to go back to basics.”

Rebecca Addey, Paediatric Patient Experience Officer for the Trust, explained: “The best way for staff working at the Trust to become the best at looking after children and young people, is to learn from them what they want and need from us.

“It is important that we empower young people to understand their own health and to promote their wellbeing; the only way to do this is by involving them in every aspect of their care.

Victoria's Voice members

Victoria’s Voice members

“Members of Victoria’s Voice regularly teach doctors and other staff how it feels to be young and in hospital. In these sessions staff are given practical guidance on how to communicate with young people.

“The doctors’ inductions are a great opportunity for young patients to share their experiences and to be involved in improving care for future young patients.”

During the recent session, participants were asked to ‘Draw What You Hear’. This activity revealed how hard it can be to communicate effectively. Another activity was called ‘The Exclusion Game’ which demonstrated how children and young people can sometimes feel left out of decisions when they are in hospital.

The young people from Victoria’s Voice also told the junior doctors about their ‘Charter of Promises’. The charter is a list of things that children and young people should expect to experience while in hospital such as good communication, clear information, being involved in decision making and having things to do. A poster has been created featuring the charter which is put up in wards and clinics.

Members of Victoria’s Voice have also taken part in interviews for new staff and the induction sessions are part of the curriculum for new doctors who join the Trust.

Zoe Bojelian said: “The session was so impressive. Every hospital should have a group like this.

“Adam would have absolutely loved it. He would have laughed that he was referred to. He would have liked to have chatted with everyone as well.

“He would have been really pleased that the young people are working with doctors. That is something Adam would have liked to have done.

“He would also have wanted to thank them for their work.”

Zoe said it is vitally important that all doctors and other medical professionals learn how to communicate well with children and young people.

She explained: “There is definitely a need to improve communication between doctors and young patients.

“The most important thing is not to make assumptions. Don’t assume that all children with the same condition are the same. Don’t assume that a particular child of a particular age has a particular understanding. Check with the child and the people who know the child.

“Children who spend a lot of time in hospital are often experts in their own care. They have immense expertise in their own health.

“A 12-year-old with a long-term health condition is going to have far more knowledge than a 30-year-old who has had a condition for a couple of weeks.

“The young patient usually knows better than anyone how their condition impacts on them.”

Junior doctors and staff taking part in one of the activities

Junior doctors and staff taking part in one of the activities

After the event, one of the doctors, Ashlea Norton, Tweeted about the induction: “Great session with @voice_victoria today – good to hear honest opinions from children and young people about the care we provide.”

For more information about Victoria’s Voice go to Twitter: @voice_victoria or search Victoria’s Voice on Facebook. You can also view the group on the website at: https://www.bfwh.nhs.uk/childrens/

Top tips for talking to young patients

Always check it’s ok to come in.

Don’t lie – tell me if it might hurt or things might take a while.

It’s hard for me to ask questions sometimes – please check with me if I have any.

I like to know the reason for things – it helps me to understand.

Encourage me to speak for myself.

Offer me the chance to speak without my parents in the room with a chaperone.

If you have to pass on information, please tell me.

Vic Voice 4 IK 2016

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