Different life stages

Ms Lewis-Norman, who is based at University Hospitals Bristol and Weston NHS Foundation Trust, also covers North Bristol NHS Trust and Royal United Hospitals Bath NHS Foundation Trust, supporting patients aged 16-24.

Many factors play into the life stage that a young person has reached, she says. ‘For example, someone who’s been through the care system, or hasn’t had the grounding of a stable family life, will have vastly different support needs from someone who is still close to their family.

‘More young people are questioning their gender. Young people are forging their own identity and who they are becoming might not be immediately evident – there are so many facets that make up a young person that you generalise at your peril.’

Her job is to ascertain what is important to the young person and offer support, alongside their clinical management, whether that is practical or emotional or both. She needs to build up a trusting relationship with them, and communicate in ways that suit them.

A cancer diagnosis is always tough, but teenagers and young adults face different challenges from those of children and older adults, she adds.

‘Young people are just becoming independent, they are just figuring out who they are and what they want to be, and that process is paused.

‘To a certain extent, they have to step away from their peers, from education, from work plans. Hopefully they can maintain their relationships but that can change, and everything is sort of parallel, and different, from what they thought would happen. They need a lot of support with that.’

‘Communicating by text gave me time to process things’

Laura Stainton was 24 when she was diagnosed with melanoma in June 2020. She was supported by Teenage Cancer Trust outreach nurse Tracie McVeigh.

She liked the way that the outreach nurse adapted communication methods to suit her needs, and the support she received to understand her diagnosis and treatment.

‘Our main communication was via text, which was particularly beneficial for me as I can sometimes find speaking on the phone or in person overwhelming,’ she says. ‘Texting gave me time to process things before I had to formulate a response.’

The nurse also attended oncology appointments with her until she felt able to go by herself, and was always available to answer questions.

Picture credit: iStock

Quick to respond ‘Tracie made me feel comfortable, which meant I was able to speak to her on the phone when I needed to, or needed clarification. She was particularly quick to respond, she would let me know the things I needed to know, and she saw me as a person rather than a patient or number.’

The nurse also went to see Ms Stainton in hospital and spoke to her partner and parents – it was particularly helpful for her mum to get information directly.

‘Following completion of my treatment, she still checks up on how I’m doing. Tracie was a great support for the whole family.’

Practical support

Often the main concerns young people have are more to do with what is making them different from what they hoped for in life, rather than the cancer itself, she says. ‘How can I go out with my friends when my hair is falling out? Or, it’s important I don’t miss too many university lectures because I want to graduate with my peer group, or how can I do exams if I’m in isolation?’

Practical help could mean anything from supporting them with wigs or makeup skills, like drawing on eyebrows – or arranging for someone to sit their GSCEs while in hospital.

The communication method is also important. Many young people tend to respond best to a text message or phone call, says Ms Lewis-Norman. ‘They don’t look at emails,’ she says.

‘And I would only use that method if I wanted to give a large volume of information. Young people want to know how this particular thing is going to affect them on a particular day in their situation, and they can only do that through conversation.’

Picture credit: iStock

Help to navigate an inflexible system

Teenage and young adult specialist nurses have smaller patient numbers than their counterparts in adult services, she says, but they also have a particularly challenging job.

‘Young people are entering a system that’s not built for them. Paediatric care is brilliant, but it’s centred towards children and families, and adult care is generally geared towards functioning adults who are independent, and who can largely make their own decisions and get to appointments and so on.

‘But the age group we work with at Teenage Cancer Trust are in that middle ground, where we are trying to help them navigate a system that’s largely inflexible, has high expectations of them to keep appointments, and can seem like a conveyor belt.’

All these things can make it extra difficult for young people to navigate the healthcare system, perhaps for the first time on their own without a parent to take control, she says.

‘That’s why my role, and the wider teenage and young adult team, is so vital because it fills so many gaps in adult care. It helps to be the buffer for a young person so they can have effective healthcare.’

Peer-group testing

The TCT ensures that all its information is written with young people’s needs in mind and that they are involved at every stage.

Although information is gleaned from the charity’s expert nurses and other staff working in the NHS, before anything is published it is tested on two groups of young people. One made up of those with a cancer diagnosis and the other of people in the same age range who have not had a cancer diagnosis.

Clinical information lead Rosie Vare says this is to replicate the experience of young people who have just had a diagnosis and do not have ‘acquired’ knowledge of cancer.

‘It’s been useful for understanding a lot more about how we need to write for young people, what sort of tone to use, and things that seem minor, but aren’t really minor,’ says Ms Vare.

This includes not using language that young people do not use, she says. ‘A good example is that we had written “hanging out” with your friends in our information. Three separate young people said that no one says that any more – they say “spending time with”.’

5 tips on conversations with teenagers and young adults about cancer

Advice from teenage and young adult clinical nurse specialist Claire Lewis-Norman (pictured):

• 1. Be relaxed, open, honest and curious – invite someone to tell you who they are with open questions

• 2. Do not make assumptions – treat each person as an individual who needs to be understood in the context of their life stage and their circumstances, such as their family situation or emerging identity

• 3. Directyour conversation at the young person, even if they want a parent or partner to attend appointments. Ensure you hear what they choose to tell you rather than what perhaps parents and partners want you to know

• 4. Do not talk down to a young person – speak to them as if they are a grownup, and do not make assumptions about their developmental stage based on age

• 5. Asking about their pronouns is a simple thing you can do for a young person to show you are not assuming anything about them

Using QR codes

Finding new channels to get information to young people is also important, she says.

The TCT makes use of social media, but is also developing new ways of making information accessible, such as embedding QR codes in posters or small cards that can be picked up in a clinic.

It also uses social media to encourage young people to share tips with others who are facing challenges, such as a first trip to hospital or how to cope with the side effects of chemotherapy. ‘The response has been huge,’ she says, with suggestions including eating ginger for nausea and making sure to take an extra-long charger lead to hospital.

‘We’re sharing information by young people, for young people,’ she says. ‘We know that they see a lot of value in hearing from other young people who have been through the same thing.’

Find out more

Teenage Cancer Trust. teenagecancertrust.org

Youth Advisory Forum Wales (2023) Teenage and Young Adult Cancer Youth Advisory Forum: Young Person’s Principles of Communication.