How we can help

When your child is first diagnosed with eye cancer, the shock can be numbing. Concerns about the future, both short and long-term, can be overwhelming. This is a difficult period in any family’s life, full of new information and mixed emotions, as well as practical matters to be dealt with. CHECT support workers are there for families attending retinoblastoma clinics for treatment, screening and beyond.

We offer lifelong support to anyone affected by retinoblastoma. People often find that talking things through helps to relieve fears and anxieties, so our support workers are non-medical staff who will listen to your concerns and assist you in finding the help and information you need. CHECT support workers can also help find the right person to solve practical problems or find out the answer to questions you may have, whether it is connected to retinoblastoma, financial assistance or the practicalities of coping with a child in treatment.

CHECT support workers can offer guidance through school years, during transition to adulthood and beyond, answering questions about other issues later in life, schooling or how to access genetic counselling. For some people, retinoblastoma can have a lifelong impact. We offer support to our adult members who have had retinoblastoma as a child throughout their lives and we can help with any retinoblastoma-related concerns you may have. We also provide support for other members of the family, for example grandparents, aunts and uncles, brothers and sisters who have all been affected by the diagnosis in different ways.

We are there for you so don’t be afraid to ask us to help.

Our support workers are Sarah Turley and Lena Copley. They can be contacted by phone or email. You can also find Lena on the retinoblastoma ward at the Royal London Hospital and Sarah on the retinoblastoma ward at Birmingham Women’s and Children’s Hospital.

Please note that CHECT support workers are not retinoblastoma medical professionals and do not give advice regarding the treatment or management of retinoblastoma.