Your support worker
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.
The Childhood Eye Cancer Trust (CHECT) employs two support workers who are there for families attending retinoblastoma clinics for treatment and beyond.
People often find that talking things through helps to relieve fears and anxieties, so your support workers are non-medical staff who will listen to your concerns and help liaise on your behalf to find the help and information you need.
CHECT support workers can also help find the right person to solve any practical problems or find out the answer to any questions you may have, whether it is connected to retinoblastoma, financial assistance or the practicalities of coping with a child on treatment. Our support staff are there to help so don’t be afraid to ask for advice.
Our support workers are also there to offer advice through school years, during transition to adulthood and beyond, answering questions about other issues later in life, like artificial eyes, schooling or 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 retinoblastoma in different ways.
The Childhood Eye Cancer Trust has a network of individuals and families who have been through similar experiences and who are happy to share their stories with others. Much reassurance can be gained from knowing how other families came through this period and emerged the other side feeling able to cope and carry on with life.
We also publish a range of information leaflets and factsheets covering many aspects of treatment and coping with retinoblastoma and the impact on family lives. You can find the list of publications available by going to the Information section.
If you would like to speak to a support worker or if you would like to be put in touch with one of our family contacts you can speak to either Julia Morris, support worker, tel: 0121 708 0583 or email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it. or Julie Firth, support worker & communications officer, tel: 020 7377 5578 or email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it.
