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Supporting children and their families through stem cell transplant – Jess the CNS

Jessica Fuidge is an Anthony Nolan post-transplant paediatric Clinical Nurse Specialist (CNS), working at Bristol Royal Hospital for Children.  

She spoke to Caroline in Patient Services about her job supporting children going through a stem cell transplant and their families.

Can you tell me a bit about your career and how you came to be the Anthony Nolan post-transplant paediatric CNS?  

I was initially a nursing assistant and then had three years of nursing training. I really enjoyed the bone marrow transplant ward as I found I made most difference there, and managed to get a position there at the end of my training.

After a few years, the adult service expanded, and we became a Haematology, Oncology and Bone Marrow Transplant unit for children. Over eight years later, the CNS job came up. This was my dream job so I couldn’t not go for it!

Tell me more about your role?

I support children going through stem cell transplant, and their families. If there’s anything they need, I’m there. I can explain if they haven’t understood something, if they need to chat and offload, or if the child just wants to see a friendly face.  

I also offer 1-1 support through play. We’ve got basic psychology training, and if they need further support then we refer them on to the psychologist.

We book appointments for patients’ work-ups before transplant. They meet the team, talk through the process and care, and have a chat about their wellbeing. There’ll also be x-rays, blood tests, and a dental check, to check the child’s well enough for transplant. I usually take them up to the ward so they know where they’re going to be staying, for some reassurance.

When patients are discharged from the unit post-transplant, I review them in clinic to follow up their care.

What age range of children do you work with? When do you first meet them?

I work with children up to 18 years old, and we first meet them during the work-up period. Sometimes the children will sit in as well, but sometimes the parents prefer them not to. Some prefer to talk to their children using booklets.

I’ll go through the practicalities of the ward and the isolation period, the discharge process, and what to expect day-to-day. I try and do this step-by-step as it can be a lot of information and you don’t want to overwhelm them.

Having a stem cell transplant and staying in hospital can be a very difficult and stressful situation for children of all ages. How is the transplant process explained to them and made easier to understand?

We can prepare children for losing their hair and having a Hickman line by showing pictures, and using a toy lion that has a removeable mane and ‘wigglies’, which are Hickman lines. We have Barbies with no hair, too.

We have pain charts so they can point to how they’re feeling, and sticker charts for when they take their medication. We try to make it as interactive as we can, and comfortable – they can bring in music or anything else from home as long as it’s new or wipeable.

For older children, we have books for different ages. I find the best way is to be honest with them. Teenagers want to be involved in the conversations and ask questions - it’s their body. We explain what could happen and what’s in place to support them.

How do you discuss side effects such as infections, fatigue, or GvHD with children?

It depends what age they are. We tend to describe GvHD as a rash on your skin (if it’s skin GvHD) and explain that you might have to apply cream for a few days.

If they’re feeling tired, we say it’s because you’re having lots of medicines so you might feel very sleepy.

With infections, we explain that they might get a temperature or feel hot, and might need some medicine to bring their temperature down.

How do you involve the family and ensure they understand what to expect when their child goes home?

Once a child is discharged, they stay in accommodation called ‘Sam’s House’ which is local to us. We keep families there between 2-4 weeks, all being well, and they’ll come to our Day Bed Unit two or three times a week.

When we feel they’re stable enough, we send the family back home with a discharge plan and liaise with their local hospital.

The families come back regularly to see us at 3, 6, 9, 12, 18, and 24 months, and then yearly until they’re old enough to be referred to late effects clinic. At their local hospital, they’ll be seen weekly, then every two weeks, monthly and then every three months, depending on how well they are.

One of the main differences being a paediatric nurse is that you work with parents and siblings as well as the patient. How do you make sure they feel supported?

We visit families regularly and check their understanding of what’s going on, and make sure they’re supported at home, work and school.

Usually we get a CLIC Sargent social worker involved with financial support. Often parents have to stop working, so we can help with applying for an Anthony Nolan grant, and a Macmillan grant too.

If siblings are over 12 then they’re able to come in when their brother or sister is recovering, which can help them feel involved. For families at Bristol, they can stay in the accommodation at Sam’s for the duration of treatment. We provide schooling for siblings as well as a play centre.

I always say I’ve got a phone, so if they ever need someone to talk to, they can ring me.

How do you manage expectations of children and families about the recovery, such as having to come back in to hospital and regular follow-up appointments?

We make it clear from the beginning that it’s a long journey and that it isn’t just the stem cell transplant and the isolation phase - it’s an ongoing process. It’s a big adjustment when they leave our care, but we’re still always here, even if it’s just at the other end of the phone.

How do you interact with schools when the child is ready to go back to education?

During isolation, a school teacher will see each child every Monday to Friday for an hour. When they go home, we try to get home tuition, because their immune system needs to be at a certain level before they can go back to school.

When they’re ready to go back, we send a letter to the school to explain what procedures they’ve had, and remind them to send letters out to all families regarding infections. We also advise schools that if the child has a temperature, they need to ring the parents straight away as the child needs to get to A&E within the hour.

Many of your patients have to travel a long distance to attend clinic, and when they are well enough they go back to their local hospitals. How do you maintain the long-term follow-up?

Because a lot of our families come from quite far away (our furthest are from Belfast and Cambridge), we’ve just started outreach clinics. We’ll go with the Consultant to Cambridge every six months, which has been really successful.

What part of your job do you love the most?

I love being able to have the time with families to get to know them and be a support through difficult times. It’s nice to receive a smile from that child - that just makes your day. It’s so special to give them a short period of time where they can do normal stuff like have a conversation or play a game.

My favourite part is when I go to the clinics and see the child in their school uniform - they tell you all about being back at school. It makes our job worthwhile. You just think ‘Wow, we’ve done a good job here.’ There’s no better feeling.  

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