Liver Transplant / Transition - Children's Liver ...

Children's Liver Disease Foundation

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Liver Transplant / Transition

Passion123456 profile image
4 Replies

Hello Everyone, my daughter has had a liver transplant at the Birmingham Children's Hospital. She is seventeen years old and will be moving to the adult's clinic at the Queen Elizabeth Hospital in March 2020. I am, concerned with the transition and she is also scared with all the changes. My main concern is, that in the adult clinic as part of the care package the adult clinic do not offer a five year check-up. This is concerning especially, if your child needs monitoring. Also, routine blood test will done at the GP clinic, which means it will take longer for the results to get back to the consultant.

My daughter has had abnormal blood test results for the last year however, the results have started to improve.

My question is are there any more young adults in the community moving to adult the hospital and my have concerns in regarding transition.

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Passion123456
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heather45 profile image
heather45

My daughter now 21 transitioned from children's to adults and found the whole changing process distressing. You do have to help them keep on top of check ups, blood results ,medications and appointments and yes it is an emotional upheaval. We did share our concerns at outpatient, gp and yearly consultations but honestly it's a DIY project!!

Passion123456 profile image
Passion123456 in reply to heather45

Thank so much for your reply and we are genuinely worried becasue I feel the support network in the adult hosptial may not be as good as the Children's Hosptial. I feel that the young adults could be esaliy be neglected. At the Children's Hosptial there is a good support network because as part of the care package they offer liver direct as a service. This service is so useful, for if you need any advice. There is always a on call liver registart available to give advice and I am not sure if the adult hosptial will have the above services in place. This is extremely frightening and not reassuring.

MichelleCLDF profile image
MichelleCLDFPartnerCLDF

Apologies for not responding to your query sooner. We work closely with Birmingham QE and support young people through their transition into adults services. It is our experience that the team there are excellent and take very good care of young people moving across from the Children's Hospital. Monica Smith is the Clinical Nurse Specialist for Adolescent Transition in the Liver Unit and is very committed to supporting young people through their transition. She also has a young people's support group Birmingham Liver Youth Support (BLYS) which she supports that your daughter can access and chat to other young people who have gone through transition. Louise, our Young Person's Officer also attends the transition clinic at the QE on a monthly basis and can offer support. She will be there in February. If you or your daughter wants to contact Louise direct then please e-mail her on youngpeople@childliverdisease.org. We also have an online closed group for young people aged 16 - 24 with a liver condition and many of the young people on there will have experience of transitioning to adult services. She can search CLDF Hive+ on Facebook and request to join. Many thanks. Best wishes, Michelle, Head of Support, CLDF

Passion123456 profile image
Passion123456 in reply to MichelleCLDF

Thank for the reply and there is so many services available in the community for young adults.

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