Overview
Our partner organisations and charities host lots of useful information and advice for children, young people, and families. This section signposts to areas of interest and expertise, helping to drive excellence in treatment and care.
Children's
Children’s
CCLG (Children’s Cancer and Leukaemia Group) offers an interactive cancer journey map for parents and families of young people.
Long term follow-up
The long term follow up service look after children and young people who have completed their cancer treatments a minimum of 5 years ago. They carry out surveillance for cancer and treatments received as well as coordinate the management of these should they arise.
Transition
Transition is the planned and coordinated move from Children’s Oncology Long Term Follow up service to the Adult Oncology Long Term Follow up service for all young people.
 Transition - Sheffield Children’s NHS Foundation Trust (sheffieldchildrens.nhs.uk)
Late effects
The late effects team discuss the possible late effects of the treatment an individual has had and will monitor this by the most appropriate method of follow up which aims to minimise these effects by providing expert advice, guidance and support.
 Late effects of cancer (leedsth.nhs.uk)
 Late Effects - Sheffield Children’s NHS Foundation Trust (sheffieldchildrens.nhs.uk)
 Palliative care
Palliative care is an approach that aims to improve the quality of life of patients and their families facing life-threatening or life-limiting illness.
Children's and Adolescents Oncology and Haematology, Palliative End of Life Care (leedsth.nhs.uk)
Genomics
NHSE (NHS England) offer a supplementary guide for families who have been offered whole genome sequencing.
Great Ormand Street Hospital have created a 2-part video which will help you to discover what your genome is and how the technology behind whole genome sequencing works. The short animation, aimed at young people, explains what genome sequencing is and what happens when patients have their genome sequenced. It is of relevance to patients, their parents and anyone else who wants to learn more about the world of genetics and genome sequencing.
Scan the QR codes or click on the arrows for more details regarding information at diagnosis, living with cancer, life after treatment and family life for children and young people treated in Leeds.
Teenager and Young Adult
Teenager and Young Adult
Overview
TYAC and Cancer Research UK offer expert information on cancer in teenagers and adults. The following links highlight the support available to all young people and their families.
 https://www.tyac.org.uk/information-and-support/information-and-support
 Teenage and young adult (TYA) cancers | Cancer Research UK
Late effects
All cancer treatments are different and affect people in different ways. Most people have some side effects during treatment. But some people also have late effects of treatment.
 Late effects - TYAC - Teenagers and Young Adults with Cancer
Fertility
 Fertility - TYAC - Teenagers and Young Adults with Cancer
TYAC discuss how cancer and its treatment can affect your fertility. It is for teenagers and young people who need information about this before, during or after cancer treatment. It may also help carers, family members and friends.
 Cancer Fertility and Me | Helping you make the right decision for you
Cancer, Fertility and Me off support for people who have had a cancer diagnosis to think about their fertility preservation options before they begin treatment.
 Fertility - Cancer support charity for young people - Shine (shinecancersupport.org)
Shine offers emotional support and advice through podcasts, blogs and videos involving young people with cancer. A private Facebook group is available which allows you to connect with others dealing with similar issues.
This video series discusses effects of cancer on fertility for men and women, myth busting and family planning options.
 Trekstock Talk's | Fertility | Information and advice for young people experiencing cancer - YouTube
TYAR.org – Teenage & Young Adult Research | Clinical Trials | Genomics | Biobanking
The primary aim of TYAR (Teenage and Young Adult Research) is to create an age-appropriate resource which helps to inform Teenagers and Young Adults about Clinical Trials, Biobanking and Genomics.
Charities
Charities work closely with trusts and specific teams to enhance the care and support provided by our experts. This collaborative approach ensures the best possible clinical and psychological outcomes for children and young people and their families.
Anthony Nolan
https://www.anthonynolan.org/patients-and-families
Anthony Nolan is the charity that makes lifesaving connections between patients in need and incredible strangers ready to donate their stem cells. They hope to grow the stem cell register with donors aged 16–30, carry out groundbreaking research to improve survival rates and provide the best post-transplant care for people affected by transplant. If you are going through a transplant and need support, they’re here for you.
