Talking to a young person about death must be one of the hardest jobs, but for youth worker Darren Meade, helping young people manage their complex or life limiting condition whilst also helping them to navigate all the usual challenges of being a teenager is all part of the role.
Darren qualified as a youth worker after studying Dip HE Youth Work and Community Development (JNC) at Leeds Beckett University. He then started his career as a youth worker for the local council, before moving into the voluntary sector and delivering detached youth work across Leeds, where he honed his skills at building positive working relationships with young people who were often from deprived and difficult backgrounds.
With these skills he applied for the youth worker post in the Leeds Hospitals Oncology team, funded by The Teenage Cancer Trust, where he spent a year as maternity cover supporting young patients with their cancer diagnosis.
“One of the role descriptions was ‘helping young people prepare for death’ and in all my youth work career I’d trained and specialised in helping young people prepare for life. I was fascinated at this aspect of the job. It was so worthwhile – I really felt like I was making a huge difference to young people who had been dealt an extremely difficult hand of cards,” said Darren.
Looking to enhance his skills, Darren returned to Leeds Beckett University to study a Postgraduate MA in Youth Work and Community Development, undertaking his placement practice with the Paediatric Diabetes Team at St James’ Hospital in Leeds, where he is now permanently based.
Darren is valued by the clinical team, liaising closely with the clinical psychologist and other medical staff who refer patients to him. Autonomy within the role allows wraparound care for patients via practical, emotional, financial or educational needs.
The importance of support and providing a listening ear to young patients moving into palliative care is crucial, he explains:
“You might be working with a 17-year-old, and he’s got four months left to live. Being able to help enhance that time they have – tell me another job where you can make a difference like that? Helping to guide them through this is what would get me out of bed in the morning.”
Help navigate challenges
Darren regularly supports young people who not only live with a long-term condition; many also struggle with parental domestic abuse, or alcohol and substance abuse. His role is to help them navigate these challenges and the transition into adulthood, alongside managing their chronic health condition.
He described how, as a youth worker, he has the time and skills to support the holistic care of the person, alongside the exemplary medical treatment provided by the hospital:
“When you are diagnosed with Type 1 diabetes it’s never going to go away, and you must attend to it every single day for the rest of your life. You can imagine the psychological claustrophobia and the anger that can create.
“A youth worker is trained to support the young person in a variety of ways such as introducing them to other young people that are living with diabetes and helping them to navigate relationship issues.”
Another benefit of youth workers in hospitals is the cost saving through fewer missed appointments. According to NHA England missed appointments cost around £120 a go, as well as potentially delaying treatment. Through one-to-one support the youth worker can help ensure young patients go to their appointments and manage their condition more effectively.
Darren’s MA research paper undertook a qualitative study exploring the value of the youth worker as part of a diabetes clinical multidisciplinary team and captured anonymised feedback from his patients. This 20-year-old male patient who recently moved up to adult services, said:
“I feel that speaking is the most important thing to understanding what’s wrong. I know that since I’ve been speaking with you (youth worker) that you’re not here to pass judgement, you’re here to help, the whole team is here to help. I feel that the youth worker role helps me to feel like I’m a person, not just a patient…I don’t have my doctors phone number, or my nurses, but I have my youth worker’s. I know that I can come to you for support.”
Darren is now planning a PhD study to help evidence the difference youth work makes to patients transitioning from children’s to adult’s services, to help show the value of youth work within the NHS.
“It would be great in future if more people knew about a career in youth work – just as young people are inspired to become a doctor or a nurse, because they’ve had a positive experience,” said Darren.