Information for parents
Bringing together families affected by retinoblastoma
Retinoblastoma is rare and meeting another person or family affected by it can be difficult as they are scattered throughout the UK. We hold Members’ meet-ups throughout the year to bring together families who would like to meet others and share experiences and information in a relaxed and informal setting. The events bring together newly diagnosed families with families further along their retinoblastoma journey, and are a chance to socialise outside of the hospital setting. Grandparents and siblings are also very welcome!
We also have a closed Facebook group for parents of children diagnosed with retinoblastoma – ask your support worker for details.
You may also find it helpful to read others’ experiences of diagnosis, treatment and life after treatment. You will find many of these in the ‘Stories & News’ section on the website, and through the link below.
Keep checking our meet-ups page for Members’ Days in your area.
Holidays and Wishes
When your child is having any type of treatment for retinoblastoma it’s a challenging time for the whole family, so it can help to unwind and spend time together away from the hospital. There are many organisations which offer holidays to families whose children are having – or have had – treatment for cancer, or have a visual impairment. Holidays are often subject to availability so check each organisation’s criteria before applying.
Visual Impairment
A diagnosis of bilateral retinoblastoma (Rb) can sometimes mean that your child may have some problems with their eyesight. This may result in the need for additional help and support as your child is growing up.
Your CHECT support worker will be able to put you in touch with the Eye Clinic Liaison Officer (ECLO) at either Birmingham Women’s & Children’s Hospital or the Royal London Hospital for advice and support with visual impairment.
Monocular vision (sight in one eye only)
Monocular vision is not considered a visual impairment if the sight in the remaining eye is good. However, there are specific challenges some children with monocular vision may face.
Helpful organisations
The below offer support and information on development, play, education, leisure and benefits. Links to external websites have been carefully selected, but the content of external sites is not endorsed by Childhood Eye Cancer Trust.
- The Amber Trust – Providing musical opportunities for blind and partially sighted children.
- British Blind Sport – National charity for children and adults with sight loss.
- ClearVision Books – A postal lending library of children’s books in print and braille, and tactile books.
- Guide Dogs for the Blind – Provide support for children with visual impairments, not just guide dogs.
- LOOK – Supports children and young people with visual impairments.
- Living Paintings – Audio and tactile books for blind children and adults.
- RNIB – National sight loss charity.
- Sight Scotland – Scotland’s charity for blind and visually impaired people.
- VICTA – Supports children and young people with visual impairments.
- Visibility Scotland – Supports visually impaired people across Scotland.
Other useful organisations
Cancer organisations
The Children & Young People’s Cancer Association (CCLG)
Funds and supports research into childhood cancers, and helps young patients and their families with their information resources.
Cyclists Fighting Cancer
A charity which gives new bikes, tandems and specially adapted trikes to children and young people who have been affected by cancer throughout the UK – including those with a vision impairment.
Ellen MacArthur Cancer Trust
A national charity that rebuilds confidence after cancer, using sailing to support, empower and inspire young people between the ages of 8-24.
Young Lives Vs Cancer
The UK’s largest children’s cancer charity provides specialist nurses, doctors, play specialists, Homes from Home, social care, family support, youth services, holidays and grants.
Special educational needs
- IPSEA Independent Parental Special Education Advice – experts in SEND (special educational needs and disabilities) law
- Information, Advice and Support Services (IASS) Network – resources and contacts for children and young people people with special educational needs and disabilities and their parents
Got any questions?
Contact the support team today