Wednesday 19th August 2020

Sue, Teenage Cancer Trust Nurse Consultant in Leeds, and Rob, one of our Youth Support Coordinators in Liverpool

Sue and Rob

Keeping treatment going safely

Sue: "Young people with cancer have very strict regimes which include high doses of chemotherapy, surgery and radiotherapy, which need to go on regardless of this pandemic. I’m pleased to say that we haven’t had to delay or stop any treatment in this hospital.

"We have had two young people with Covid-19 and they’ve both got better, but have been very sick in the meantime. Young people with cancer are vulnerable to Covid so they need protecting at all times."

Overcoming increased isolation

Rob: "Teenagers and young adults only make up 1% of the overall cancer population, so that’s quite an isolating figure anyway. When young people are first diagnosed now, they’re not really going to be seeing other patients or other families at all, and that can be really hard."

Sue: "We’ve had to cut down outpatient appointments to avoid too many people being together in the hospital, which might seem good, and actually has worked well. But actually those appointments are one way for young people to touch base with us, and see their peers, and for us to pick up any troubles they might be having by just having a quiet word or a cup of tea with them. We can no longer do this in that way.

"In the adult part of our practice the older young people (aged 18-25) have to come to hospital on their own due to pandemic guidance. They can’t bring any visitors with them unless there are extenuating circumstances (for example if they’re having some bad news, having chemotherapy that’s really difficult for them, or if they are terminally ill), and even then, only one family member can come and stay.

"There are also strict visiting times in the adult hospital, where only one visitor can come between 2-4pm. However, in the Children’s Hospital where the 13-18 year olds are treated, one parent can stay with their child/teenager, which makes things a little easier.

"All of this is really hard for us as nurses, because that’s exactly what Teenage Cancer Trust units do: get everyone together. As a team, we have had to change the ways in which we work and we’re doing everything we can to support those young people and their families – we phone them or text them most days, keeping in touch and providing much needed advice and support wherever we can."

Moving our support online

Many of our Youth Support Coordinators, including Rob, have spent some or all of the lockdown period working from home.

Rob: "Working with young people face-to-face is a massive part of our role. So straight away I was keen to make sure we could still meet as a group. We were able to set up some online groups quite quickly, and we now do two a week. We normally do a quiz, which the young people have loved! And we do a more focused session on a Friday: we’ve done art sessions, online escape rooms and team building sessions.

"I’ve sent some ukuleles round to young people and we’re all gonna try and learn it, to give ourselves some new skills and learn something that’ll pass the time.

"Young people also asked me about setting up a long-term project for those who want something to get on with in their own time without any pressure of joining sessions. So I launched the teenage & young adult ‘bonsai club’. Since then around 20 young people have now received a bonsai tree. We all keep in touch about how we are getting on, share advice, set each other photo challenges and ultimately promote a sense of community and feeling part of something – which has been great."

Sue: "Our Youth Support Coordinators are doing a fantastic job getting everything online and continuing to make sure that the peer group support continues. They’re hosting coffee mornings, meditation sessions, baking sessions, there’s going to be a makeup session soon. All the staff are working really hard to make sure that we keep young people engaged. We are also doing our end of treatment meetings with young people online, and that seems to work very well. This helps to provide them with reassurance at a time where the worries of completing treatment can be exacerbated by Covid-19."

Rob: "Cancer can take a lot of choice away from young people, so anything I can do to give them more of a choice in what’s going on and what kind of service they’re getting is really important to me, and I think that sense of autonomy is a lot more important than people realise."

We’re still here for young people with cancer

Sue: "The wards and outpatients have been fairly quiet, although it is getting busier now. There have been fewer referrals from the GPs and A&E through the lockdown period. We are concerned that there are young people out there with possible cancer symptoms who just aren’t going to their GP, they aren’t getting the tests they need because they think we’re busy – we’re here waiting to look after those young people who we know are out there. The NHS is definitely open for business and is a very safe place to be, taking infection prevention very seriously."

Rob: "I’m not going to lie, it has been amazing getting back on to the ward recently and working face-to-face with young people again. But I do think this period has shown how adaptable our role, and youth work as a whole, can be.

"To quickly learn from the young people about what kind of service they want during lockdown, and being able to go away and make that happen in a way that is safe, professional and engaging all whilst trialling completely new ways of working is a testament to the importance of the role. This has happened throughout the country and it’s been amazing to see.

"Covid-19 doesn’t stop teenagers and young adults being diagnosed with cancer. It’s just about making sure we’re still there for young people: to help break up the day, alleviate some of the boredom, have a bit of fun and bring a sense of normality. And giving young people, especially new patients, the chance to meet their peers when that opportunity just isn’t there otherwise, can be a massively important thing."