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

EPISODE 4: SUPPORT FOR YOUNG ADULTS AND TEENS GOING THROUGH A STEM CELL TRANSPLANT

In the latest episode we spoke to Teenage Cancer Trust Lead Nurse, Lottie Weston about her role supporting young adult and teen transplant recipients at the Royal Marsden NHS Trust.
We talked about some of the concerns young people might have and how specialized support empowers them in their recovery.

Full transcript (auto-generated)

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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.