Patient Information Hub

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.

My child has cancer…what happens next?

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.

Leeds Transition Information

Sheffield Transition Information

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.

Leeds Late Effects Information

Sheffield Late Effects Information

Sheffield Late Effects Video Series

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.

Leeds Palliative Care Information

Genomics

NHSE (NHS England) offer a supplementary guide for families who have been offered whole genome sequencing.

Whole Genome Sequencing Information

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.

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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.

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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.

TYAC Information and Support

Cancer Research UK Information and Support

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.

TYAC Late Effects Information

Fertility

TYAC Fertility Information and Support

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 Information and Support

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.

Shine Fertility Information and Support

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.

Trekstock

This video series discusses effects of cancer on fertility for men and women, myth busting and family planning options.

Trekstock Fertility Information and Support Video Series

Research Information and Support

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.

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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.

Bone Cancer Research Trust

Bone Cancer Research Trust

Home | Bone Cancer Research Trust (bcrt.org.uk)

The Bone Cancer Research Trust is the leading charity dedicated to fighting primary bone cancer and are uniquely placed to make a difference through research, information, awareness and support.
For those affected by the disease right now, their top-quality information and supportive network means no-one should have to feel alone or isolated.

Cancer Research UK

CRUK want to bring about a world where everybody can lead longer, better lives, free from the fear of cancer.

A world where:

Some types of cancer are effectively eliminated
Many more are prevented from developing in the first place
People who do develop cancer are diagnosed at the earliest possible stage so they can be successfully treated
Treatments are more effective, kinder, and more targeted, so people can lead better, more fulfilling lives
Everyone shares in this progress equally, regardless of who they are, where they are from or what type of cancer they have

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Candlelighters

www.candlelighters.org.uk

Candlelighters bring light to families affected by childhood cancer by providing emotional, practical, and financial support and investing in vital research to improve the outcomes and lives of children with cancer.

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CCLG

cclg.org.uk

CCLG is an organisation which brings together all professionals working within childhood cancer to share expertise and knowledge to improve treatments and patient care. Our aim is to cure as many children as possible while reducing the side effects of treatment.

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Ella Dawson Foundation

Ella Dawson Foundation

www.elladawsonfoundation.org.uk

The Ella Dawson Foundation enables young adults, aged 18-30 yrs old, and their families and carers access tailored psychological, emotional, physical movement, nutritional and wellbeing support packages at any stage of their cancer diagnosis within a safe, supporting, and likeminded community.

We're here to help you feel like you and feel empowered through and beyond cancer.

Macmillan

Macmillan Cancer Support | The UK's leading cancer care charity

Macmillan are here to help everyone with cancer live life as fully as they can, by providing physical, financial, and emotional support. They will do whatever it takes, no matter what a person's needs are, they will listen and support them however they need them to — big or small.

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PACT

The Parents Association of Children with Tumours and Leukaemia (PACT) is an independent charity linked to the Haematology & Oncology department.

It supports families by providing accommodation near the hospital, holiday caravans in Filey and Berwick upon Tweed, and organising trips and treats for children.

The charity has been able to fund research and new equipment in the department.

PACT Co-ordinator Beryl Welburn also provides continual support for children and their families during treatment.

Visit the PACT website to find out more about the charity and how you can support them.

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Redmapp

Redmapp – Supporting parents of children with neuroblastoma

Redmapp support the parents of children with neuroblastoma. For relapsed or refractory neuroblastoma, there is no standard treatment to guide parents through treatment decisions. Redmapp is here to help.

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Sarcoma UK

Home | Sarcoma UK

Sarcoma UK is a national charity that funds vital research, offers support for anyone affected by sarcoma cancer, and campaigns for better treatments. It is the only cancer charity in the UK focusing on all types of sarcoma.

Sarcoma UK's Support Line is here for everyone affected by sarcoma: 0808 801 0401 Monday to Friday, 10am – 3pm.

Teenage Cancer Trust

https://www.teenagecancertrust.org/

Teenage Cancer Trust offers unique care and support, designed for and with young people. We fund specialised nurses, youth workers and hospital units in the NHS, so young people have dedicated staff and facilities to support them throughout treatment.

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Teens Unite

https://www.teensunite.org/

Teens Unite supports young people, aged 13-24, living with or beyond cancer. No matter how long it's been since you were diagnosed, you can join our regular activities and short breaks away from home with others your age who get what you're going through.

We run regular activities (in-person and online), short breaks away from home, and programmes for you to get involved in - suitable for every stage of your diagnosis, treatment and recovery. They're free to come along to and there's something for everyone!

From theatre trips to football stadium tours, yoga to outdoor sports, art to product design - and we're always adding new and exciting events for you to come along to.

Best of all, there’s no limit to how long or how often a young person can access our support – we’re here whenever you need us.

The Brain Tumour Charity

About us | The Brain Tumour Charity

Committed to saving and improving lives, the Brain Tumour Charity are moving further, faster to help every single person affected by a brain tumour. They are set on finding new treatments, offering the highest level of support, and driving urgent change. And they are doing it right now. Because they understand that when you, or someone you love, is diagnosed with a brain tumour – a cure really cannot wait.

Trekstock

Trekstock are here to help you meet others in a similar situation, to get you moving and staying active, to look after your mental health, and empower you with information on the trickiest things you might be facing. From exercise to friendships, sex to nutrition - Trekstock are here for it all.

Young Lives vs Cancer

https://www.younglivesvscancer.org.uk/

Young Lives vs Cancer are a charity that helps children and young people (0-25), and their families find the strength to face whatever cancer throws at them.

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Patient Information Hub

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

Transition

Late effects

Palliative care

Genomics

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

Overview

Late effects

Fertility

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

Bone Cancer Research Trust

Cancer Research UK

Candlelighters

CCLG

Ella Dawson Foundation

Macmillan

PACT

Redmapp

Sarcoma UK

Teenage Cancer Trust

Teens Unite

The Brain Tumour Charity

Trekstock

Young Lives vs Cancer

Patient Stories

Read about lived experience partners via the Candlelighters Facebook page below

Site links

Our network

Useful links

Send us an email

leedsth-tr.yhctyacodn@nhs.net

Send us an email

leedsth-tr.yhctyacodn@nhs.net

Contact us