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Childhood Eye Cancer Trust

The Childhood Eye Cancer Trust (CHECT) is the only UK charity solely dedicated to helping families and individuals affected by retinoblastoma, a rare form of eye cancer. We provide support, raise awareness and fund research into prevention and treatment.

About Childhood Eye Cancer Trust


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The Childhood Eye Cancer Trust (CHECT) is the only UK charity dedicated to working with and on behalf of the babies, children and families affected by retinoblastoma (Rb), a rare form of eye cancer that typically affects children and babies under the age of six.

Every week approximately one child in the UK is diagnosed and around 200 children at any one time are receiving treatment or aftercare. Although 98% survive, over half of all children diagnosed will lose an eye and some will lose their sight.

CHECT’s mission is to prevent sight loss and death as a result of having retinoblastoma and to support those who are affected by it.

We do this in three main ways: supporting children and their families diagnosed with Rb, for as long as they need our help; driving earlier diagnosis through raising awareness of the disease; and helping to fund research into the treatments and care of those affected. 82p out of every £ donated is spent on delivering support, funding research and raising awareness.

We want to increase our reach and depth of our work in our local communities. To do this, we aim to plan and execute long-term projects such as increased support service provision and the commissioning of psychosocial research.

Over the next three years, we want to ensure our efforts are not just reactive, but part of a larger, forward-thinking strategy that allows CHECT to deliver activities that reduce the impacts of having a diagnosis of Rb whatever the life stage.

The potential for further innovation is huge. Its impact on the lives of those affected is almost immeasurable, from the potential to save more children’s eyes and more children’s sight, to the opportunity for personalised medicines and even the prevention of tumour development.

Our ambition is to:
- Widen our impact by delivering incremental improvements in the delivery of our Support, Research, and Awareness activity.
- Increase the levels of funds raised in an ethical and sustainable manner.
- Live within our means by being mindful of expenditure and increasing the pennies on the pound spent on charitable activity.
- Be digitally enabled, focussed and savvy.
- Proactively seek alliances and partnerships to widen our reach, outputs and impact.
- Be a caring and inclusive employer with a happy and focussed team.

Your Impact

CHECT’s support is unique amongst cancer charities in that it is accessible from before diagnosis, during treatment and throughout the lives of those affected – 100% of those who need support are offered it.

The impact of treatment and for some, the increased risk of second primary cancers, plus the heritable nature of the condition, means that CHECT’s work is essential to those affected as their needs change through childhood, adolescence and adulthood. Without CHECT, they would otherwise be unable to access specialist, dedicated Rb support. CHECT’s Support Workers are embedded and work as part of the NHS team and are based at the clinics at Birmingham Women’s & Children’s Hospital and the Royal London Hospital.

Dedicated support for this rare eye cancer is via the NHS, with CHECT providing a supplementary and complimentary presence at both hospitals. Because these are the only two UK hospitals diagnosing and treating Rb, CHECT is able to guarantee the offer of support to every single family affected by Rb.

The treatment programme and aftercare for these eye cancers is typically long and gruelling, with a child’s treatment likely to be intense for up to two years with monitoring gradually easing off allowing for longer periods between hospital visits. Our Support Workers meet with each family whenever they attend the clinic, providing information, a listening ear and a friendly opportunity to talk through their fears.

Over the past year, 100% of affected UK families and individuals were offered support following a cancer diagnosis. This totalled c.200 families/850 individuals. Our Support Workers carried out almost 1,300 face-to-face sessions across both hospital sites, with over 2,500 hours of support provided overall. Our Support Workers are currently seeing around 100 families per month in clinic. Due to the frequency of appointments for treatment, most of our families need to attend clinic multiple times per year. Without CHECT’s support service, families and individuals affected by Rb will be unable to access specialist input and advice.

£150

Could fund a grant for a family in the local community struggling with the cost of monthly hospital visits.

£500

Could fund a day of clinic support at the Royal London Hospital or Birmingham Women's & Children's Hospital.

£1000

Could go towards our family meet up events. Our family events provide peer to peer support for families who often feel isolated during their cancer jouney.