Support for young adults and teens going through a stem cell transplant

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Welcome to the fourth episode of the patient services podcast at Anthony Nolan my name is Billy and I'm the patient

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communication and insight coordinator.

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Throughout this series of podcasts we hope to bring your insight and support into the experience of having a bone marrow

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or stem cell transplant.

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We'll be looking at what life before during and after transplant can be like talking to health professionals for tips and

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advice and patients have been themselves will be sharing their stories and personal experience with you. We hope you find

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them helpful and informative.

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today I'm joined by Lottie Western Teenage Cancer Trust lead nurse working with teenagers and young adults at the Royal

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Marsden NHS Foundation Trust

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Having a stem cell transplant at any time in your life is challenging but for teens and young adults in need of this

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treatment it comes during the transition between childhood and the Independence that adult life brings.

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It might interfere with school college and university or the first job and leaving home today Lottie will be talking to us

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about her experiences of supporting the specific patient groups and giving us her expert insight into how young people are

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affected by cancer and stem cell transplants.

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Hello lovely, thank you for speaking with me today. I really appreciate you giving up your time. Thank you very much for

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having me here.

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So you've worked with both adults and teenagers and young adults. Do you think there's a difference between these two

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groups and how they cope with stem cell Transplants I think a transplant is a really challenging treatment period to face

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regardless of age.

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That's for young people it could be really challenging time of their life when they are.

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In the process of forming friendships developing their own identity and they may be going through periods of changing work

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or looking for employment or University course.

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So having a period of treatment where they are taken away from there.

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Here's in spends time in hospital can be quite isolating for them and it can be quite challenging and not being that peer

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support group with their friends and family.

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Yeah, I can imagine it must be really hard especially that as you say the time away from home and from their social life

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which is quite key. Yeah definitely it does really make a difference having a job in a specialist unit of this kind of

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time which can give him different ways to access the support and friends and things they need in the early phases of

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Recovery what do you think?

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The priorities are for teenagers and young adult patients having gone through a period of treatment it really varies from

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person to person.

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Play teenage the adults some of them might want to get straight back into what their friends doing and engaging with their

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peers particularly if they spent long periods of time and isolation.

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Other people might want to spend time at home with their family and engage more slowly in things with their friends early

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on in their recovery, they might feel quite fatigued and physically not up to doing as they were before.

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And some people that this can be quite challenging.

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For themselves and also to have to explain to people all the time and to have to sort of recognise that they have to slow

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down when they I'm imagine that they must be really desperate to get back to their life.

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And so how does this change the further out of transplant they go for example. Do you find that they think about missing

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education or that they might have financial concerns all be worried about.

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employment

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Yeah, this is definitely something that we.

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In order to help their recovery that we try to address as early as possible, so we do bring up issues like education and

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financial support and employment from the beginning of treatment to make sure they're getting enough support signposting

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them to different services which might support them to help get what they need.

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Sam young people certainly have really clear focus on getting straight back into their education and employment.

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Or it might be starting University we had some young people complete exams and dissertation whilst having been in for a

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transplant which is really admirable. It's really impressive, how some of them on a Focus near?

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Something found it really helpful having that support to be able to still do their studies while they're in with us.

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Is it do you think it's like good practice to trying to encourage people to keep their schools or universities informed so

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that they can have.

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skylark, I would imagine that's really important that we would also we would always help them and have it dialogue going

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on with their employer or

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And this goes all University absolutely.

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Do you think teenagers and young adult patients have specific psychological needs that are different to adults and do they

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need extra support?

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I think the amount of support that any.

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Person facing cancer needs really varies from person to person and it's really important for it to be individualized and

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Taylor to the person 13 age and young adult cancer care. It's important that they are supported by people who have

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specialist training in working with the age group so that they know that the people they are interacting with.

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Care about their needs and understand them.

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They might need extra support looking at things that coping mechanisms.

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Example of associated with being in hospital for long periods or being isolated.

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During the transplants and separated from the family and friends and it can be quite.

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Challenging or frustrating for young people to cope with being in isolation for long period of time.

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Do you encourage patients to let you know if they need psychological support once they begin their recovery at home as

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well?

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Absolutely well often some of these issues don't come up at the time, but it's later on actually that things catch up with

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him and at least not to think about things and we would encourage them at any point.

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TaxAssist support that they need a absolutely be coming back to the hospital or actually may be more appropriate to have

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something.

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Closer to home at that point yeah, but definitely having people to talk to you soon, though, they get support any point is

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really important.

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Do you feel friendships play a bigger role in terms of support for the specific patient group?

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Yeah, definitely so at the age of a lot of our patients their at the phase of transitioning between childhood and

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adulthood and it's a time when people would usually start to move away from their parents place.

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greater importance in their friendship groups, it's a really important time of

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Development to define your identity and who you are separate from your family who have been in your childhood and your

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often shaping identity based on.

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Is around that time so it can be really challenging to be?

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isolated from that support network you've got

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I think it can be quite challenging as well with social media is good for them to be able to be connected, but equally it

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can be hard to seeing what's going on outside the hospital because it kind of offers a window on the world that you're not

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getting to take part in absolute. I'm absolutely and that's the reason why we?

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Set up the units to enable people to have their friends and family support them and come and visit them as much as

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possible and we really encourage that and make space for that to happen.

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Do your patients talk to you about relationships and sexual concerns?

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Yes idea as a team we would be very open to talk about relationships and sexual concerns and it's definitely something we

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would bring up.

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Members of the team it might be something that young people want to talk about a lot or maybe not but it's about letting

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them know that actually no topics off limits.

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And they can talk to us about anything at any points.

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Like the psychological support it might not be something that you think about at the time, but it's letting them know that

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if these issues come up later.

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And they've got a point of contact I can see health and then they can have more support at that point as they need it.

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Do you find the varying levels of maturity are a factor in how teenagers and young adult patients cope and perhaps how

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involved their parents might be.

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I think maturity and coping strategies and support really varies person to person for any patient and facing cancer.

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In general people do tend to cope better if they've got a good support network in place and if they've got some good

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coping strategies and know how to deal with difficult situations.

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true regardless of age

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Young adult patients might find it reassuring to have a parent or loved one stay with them and that's definitely something

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we facilitate on the units.

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And equally there might be times when young people want to spend time alone or talk to their team without someone with

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them and that's also something we support and facilitate happening 4th.

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What is the environment like in the teenagers and young adult unit?

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It's not like usual hospital ward. It's very relaxed we have chill out zones where young people can play pool.

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Have you got Xboxes and they can sit and watch movies on the big screens? There's plenty of space for friends and family

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to visit and social areas as well.

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We have hearts computers music areas and a large jukebox. So they can play music and we encourage them to participate in

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activities either with other patients or with their friends.

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And really is it's all designed towards making the environment same as normal as possible for them so normalising the

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experience and also giving them control of their daily routine, so we try as much as possible to let them decide and they

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want to wake up decide when they want to eat.

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etc and

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And the young people involved in the design of the unit so everything from choosing the colours.

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Of the walls in the units and when we looking at services now and how we make changes we try to involve young people in

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this so they can really be part of the process exactly all parts are going to sing What You mention about giving them.

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Back some aspects of control which must be really empowering for them.

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So much about transplant and treatment that's completely out of their control. Yeah, it's really difficult for anyone

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being put in a situation where everything is completely out of your control so important to

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Isn't that control back as much as possible and in as many ways as possible to you.

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Have you found that you've had to adapt your nursing style to a change of lamb weird or a more flexible approach dealing

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with young people and teenagers.

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Yeah, as nurses you like to do meet you approach every patient as an individual and and tailor your approach to them

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specifically but with young people.

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Is really important to be flexible as we just things down to the schedule and how you going to plan your day as a nurse?

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and working with young people to make sure they've

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Control is much as possible and the nurses that work on the unit have chosen to work with teenagers and young adults are

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really passionate about this age group.

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And respect them in the choices that they make.

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Lots of questions with a teenager and adult patients sometimes that's about reiterating information to make sure that we

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understood it properly together.

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and sometimes it's helping them have control of the process and and

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Sometimes it can be helping to relieve some anxiety by talking things through again. So it's really important that the

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nursing star reflects this and that we give him plenty of time to go through things again as they need it and make sure

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you rest or the underlying fears and anxieties under those questions.

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And my final question today. Is is there any advice that you would give a teenager or young adult patient who is planning

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to have a transplant in terms of preparation and expect the recovery after transplant.

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save any new phase of treatment is really important to

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Feel like you understand and you're in controlling. You know what's going to happen. So make sure you know who your team

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are and that you've asked.

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The questions that you want to before but also know that you can go back to them and ask questions at any point.

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Everybody's experiences difference and your team are there to support you so the most important thing is to be open and

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honest about the process and communicate with them as much as possible. Tell them what's going on what you're feeling sad

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and if you have any concerns.

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There's lots of support out there and there lots of people that want to help support you through the process.

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Thank you so much for speaking with Anthony Nolan today. It's been really interesting to hear more about the work. You do

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and how you support young people.

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Thank you.

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Are patient services team at Anthony Nolan with the help of young adults and teenagers have recently published a young

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persons guide to the stem cell transplant journey, you can download and all the copies of this for free on our website.

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anthonynolan.org

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We also have a patient blog where transplant recipients are interviewed about their experiences and recovery offering tips

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and advice on how they coat the personal insight into the experience visit blog.

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If you'd like to find out more about the ways Anthony Nolan can support you and your family, please contact the patient

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services team at patient info at anthonynolan.org or call 03303030030 chat anytime. Thank you for listening.