If you’ve been affected by retinoblastoma, or you’re worried about it, we’re here to help. You call us on 020 7377 5578 or email firstname.lastname@example.org. Please have a look at our retinoblastoma resources to find out more about Rb.
We offer lifelong support to anyone who has been affected by retinoblastoma. You can read more about the specific support available to families, teenagers and adults below.
CHECT support workers
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. Our 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 staff are there for you so don’t be afraid to ask them to help.
They can offer guidance through school years, during transition to adulthood and beyond, answering questions about other issues later in life, like managing artificial eyes, schooling or how to access genetic counselling. They 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.
Our two support workers are Julia Morris and Lesley Geen and they can be contacted by phone or email. You can also find Julia on the Rb ward at Birmingham Children’s Hospital and Lesley at the Royal London Hospital.
Please note that CHECT support workers are not Rb medical professionals and do not give advice regarding the treatment or management of retinoblastoma.
Meeting others 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’ Days throughout the year to bring together families and individuals who would like to meet others and share experiences and information in a relaxed and informal setting. The events bring together newly diagnosed families and older children, young adults and grandparents who feel that they have something to offer to others or just want to meet and socialise with other people affected by Rb.
In their teenage years some young people may need a link to another person who has come through a difficult time at school or just wants to communicate with someone of a similar age who has been affected by retinoblastoma. We hold weekend events specifically for our teenage members, giving them the chance to meet and spend time with other people their age who have had Rb too.
We also link up teenagers who may be able to help each other and have a closed Facebook group for our young members. We have a dedicated teenagers area on our website, providing support and information to anyone aged between 12 and 18 who had Rb when they were younger. For more information on any of our teenage support services, please contact Lesley Geen at email@example.com.
Beyond Rb – adults after retinoblastoma
For some people, retinoblastoma can have a lifelong impact. We offer support to our members throughout their lives and we can help with any Rb-related concerns you may have. If you’d like to talk to us, please email firstname.lastname@example.org or call 020 7377 5578. You can also find information for adults on our resources page.
In 2009, a group called Beyond Rb was set up to provide social links for adults who had Rb as children. The group meet up in a variety of locations to encourage people from different areas to get involved. The first meeting took place in a pub in Birmingham and other events have followed since then.
For some people it may be that they would like to widen their social circle. Others may want to meet someone who has had similar life experiences as a result of retinoblastoma. For some they simply want to go out and have some fun. The membership of the group determine their own programme of activities and events depending on what appeals to most people, so new ideas and members are always welcome. Any adult who had Rb as a child is welcome to join the Beyond Rb Facebook group.
You can also contact email@example.com to be added to the email group and you’ll receive all information that is put on Facebook via email. If you don’t have email access, please contact us on 020 7377 5578 and we will be happy to put you in touch with the Beyond Rb organisers.
Linking with others
If you’d like to talk to someone who may have had similar experiences, our support workers can help you link directly with others by email or phone. Often it’s because a child has never met another child with an artificial eye except at a medical appointment and may feel that they are the only one. Or a parent may need some reassurance or tips from another parent who has experienced chemotherapy with their child at the same local treatment centre.
Sometimes parents meet in the clinics but due to the stress of the day never manage to catch up with one another again. Our support workers are happy to introduce people who may be able to help each other and give their permission to pass on contact details.
We also link young adults who want to share their experiences with another person who can appreciate the way they feel about retinoblastoma.