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Amelia Wheatcroft, age 2

Amelia Wheatcroft during the photo shoot

Amelia was diagnosed with bilateral retinoblastoma when she was just four days old.

Amelia has the genetic form of this aggressive childhood cancer and her mother was also diagnosed with the condition as a young child.

Amelia was given a general anaesthetic when she was just 11 days old so that medical experts could examine her eyes closely - they found tumours present in both of her eyes. Amelia started a seven-month course of chemotherapy when she was four weeks old.

Since the chemotherapy she has undergone laser treatment to her eyes on many occasions and has been called back to hospital for check ups under anaesthetic every four weeks.

Amelia has now been stable for about four months and her appointments are starting to become further apart. Amelia's eye sight luckily has not been affected so far.

More information on the signs of Rb and what to do next if you are concerned about something you have seen in a child's eye is available here.

Watch CHECT's film behind the poster campaign
- how a smart phone can save a child's life

Members weekend 2014

We are delighted to announce the second CHECT Members Weekend, taking place Fri 3 to Sun 5 October 2014 at Billing Aquadrome in Northamptonshire.

The first weekend in 2012 was a great success. The action-packed three-day event, which Blindfold runningbrought together families from all over the UK and Ireland who had been affected by Rb, attracted almost 350 people.

As one member said afterwards “We've all had a blast, met some wonderful new friends and inspirational people. Same time next year?”

This year, we are hoping to make it even bigger and better.

We have a range of activities taking place over the weekend which have been selected for people with a visual impairment in mind. Sporty members can take part in a range of activities including archery and dance. While those of you who prefer to kick back and relax, there will be music and wine and cheese tasting. And of course plenty to keep teens, children and toddlers occupied, including creative activities, play areas and swimming.

This year for the first time we are adding activities for the Beyond Rb group, and workshops for teenagers.

BOOKING DEADLINE EXTENDED UNTIL JULY 11

The booking deadline has been extended until July 11 to allow members the chance to access grants which may be available to help cover expenses for the weekend. Please speak to your support worker to find out if you are eligible.

Keep visiting the website for an up-to-date list of activities and other information.

“So good to meet old friends and make new”

We know that one of the most important factors of the weekend is the opportunity to get together and share experiences with other individuals and families affected by Rb.Adult and child archery

In addition to the planned activities, from coffee mornings to communal mealtimes and of course the Saturday night children’s party followed by a disco for adults, there will be plenty of time to socialise, catching up with old friends, and making new ones.

“Would definitely attend again. The gathering of families to share experiences and friendship was wonderful.”

We hope to see you there!

 

Click here to read more about our 25th anniversary party and members weekend in 2012.

 

Click here to download and complete the booking form for the 2014 Members Weekend. Return either by post to CHECT, The Royal London Hospital, Whitechapel Road, London E1 1BB, or to This e-mail address is being protected from spambots. You need JavaScript enabled to view it. .

Health Visitors

This page offers factual information for medical professionals which has been verified by the clinical teams at the two NHS retinoblastoma treatment centres in the UK – The Royal London Hospital and Birmingham Children’s Hospital. It contains advice on recognising the signs of retinoblastoma (Rb) as well as vital information regarding the care of adult patients who had Rb as a child.

 

World Rb Awareness Week 2014: Every squint must be checked with red reflex test

Figures from the Childhood Eye Cancer Trust (CHECT) show that in 2013, over a quarter (26%) of babies and young children diagnosed with retinoblastoma (Rb), presented with a squint as a symptom.It is the second most common symptom after leukocoria (white pupillary reflex).

As squints are common in babies up to the age of three months, the only way to determine whether this is a sign of a much more serious condition is to carry out a simple red reflex test, which is a non-invasive procedure, simply involving looking in the eye with a hand-held ophthalmoscope. In the community this is often done by a GP.

In World Retinoblastoma Week 2014 CHECT is are calling for calling for health visitors’ support in ensuring all new presentations of squints in babies and young children are checked with a red reflex test to rule out eye cancer. Click here to find out more.

 

World Rb Awareness Week 2014: Help us to raise awareness

health visitors ecard

 

 

Join our online campaign: share our ecard on Facebook or forward our info email to colleagues. Email This e-mail address is being protected from spambots. You need JavaScript enabled to view it. for more information.

 

 

 

 

Are you Rb aware? Take the test and earn CME credits.

Click here to take the ‘Recognising retinoblastoma’ test on myCME.com. This article covers how to recognise and appropriately manage retinoblastoma in children.

 

Changes to Red Book

red book cover

 

Following a campaign by the Childhood Eye Cancer Trust, the warning signs of retinoblastoma will now be listed as a reason to seek urgent medical advice on p18 of all new copies of the Personal Child Health Record (red book).

 

 

 

 

Direct ophthalmoscopy tutorial

Click here to view a direct ophthalmoscopy tutorial provided with the kind permission of Moorfields Eye Hospital.

 

What to do next

If you are unable to confidently rule out retinoblastoma with a red reflex test NICE guidelines state an urgent referral must be made for children with:

  • a white pupillary reflex (leukocoria). Pay attention to parents reporting an odd appearance in their child’s eye.
  • a new squint or change in visual acuity if cancer is suspected.
  • a family history of retinoblastoma and visual problems. (Screening is necessary from birth.)

Depending on local referral protocol, urgent referrals should be made to the GP, local ophthalmology department or A&E stating ‘suspected retinoblastoma’. Where referral is to the local ophthalmology department we recommend you call through to alert them to this case and to find out the speed with which their urgent referrals are seen (in some cases it can be longer than two weeks).

 

Download our leaflet on retinoblastoma for health professionals

 

Supporting patients who had Rb

A percentage of Rb patients will have an increased risk of developing second primary cancers. Patients should be monitored for any worrying or persistent problems such as unexplained lumps or pains, new skin moles or changes to an existing mole.

Anyone who has had Rb should be monitored to detect and manage any long-term problems caused by the disease or treatment in order to ensure the best possible quality of life.

For more information on caring for an adult who had Rb as a child click here.

 

You may find the following Childhood Eye Cancer Trust articles helpful:

Reddy, A (2013) Eye disease - recognising retinoblastoma, GP [online]

Maxwell, P (2013) Identifying signs of retinoblastoma, Nursing Times, Vol 109 No 28

paper icon Click here to download this article

Bishop, K (2013) Retinoblastoma: the parental perspective, British Undergraduate Journal of Ophthalmology, Vol 1, Issue 1

paper icon Click here to download this article

Carter, J (2009) Recognizing the signs of retinoblastoma. Practice Nursing 20(8): 394–397.

paper icon Click here to download this article

Carter, J (2010) Supporting patients after retinoblastoma. Practice Nursing 21(1): 38-40.

paper icon Click here to download this article

Carter, J (2009) Retinoblastoma - The issues faced by adults who had retinoblastoma as a child, GP Magazine 17/04/09: 41-43.

Carter, J (2011) Retinoblastoma - The issues faced by adults who had retinoblastoma as a child, GP [online]

Avaliable at: http://www.gponline.com/Clinical/article/897922/Retinoblastoma/ [Accessed 14/07/2001]

Halford, L et al. (2008) Retinoblastoma for life. Focus - Royal College of Ophthalmologists Summer: 5-6.

paper icon Click here to download this article

 

Become a professional member

For any professional whose work is somehow related to retinoblastoma or people affected by the condition. Join us.

 

Parachuting and skydiving

Reach for the skies

 

Skydive 1

 

Ever fancied the thrill and exhilaration of a skydive or parachute jump while  raising funds for CHECT? Our supporter engagement and fundraising manager, Fiona,  say it is awesome and there's nothing like it. If you'd  like some information on the nearest event to you visit www.skylineparachuting.co.uk

 

Skydive 2

 

Rachel Sim (pictured above) jumped for CHECT recently and raised a  fabulous £500. Rachel who at the time was a year 11 pupil at Davison High School for Girls was nominated by her school for "taking part in all school and community events, being extremely helpful and raising funds for CHECT".  We totally agree - Rachel you are a star!

 

Skydive 3

 

Pictured below are the fabulously named Flying Squirrels team from Vision Express in Norwich. Kate said it was awesome and she wanted to go and do it all over again, especially the freefalling!

 

Skydive 4

 

Seen here Fiona Heath, CHECT Supporter engagement and fundraising manager taking part with 5 others in a successful  Guinness World Record Tandem Sky Jump – 292 jumpers between dawn and dusk at Dunkeswell Aifield, Honiton

Opticians

This page offers factual information for medical professionals which has been verified by the clinical teams at the two NHS retinoblastoma treatment centres in the UK – The Royal London Hospital and Birmingham Children’s Hospital. It contains advice on recognising the signs of retinoblastoma (Rb) as well as vital information regarding the care of adult patients who had Rb as a child.

 

Boots Opticians logoWorld Rb Awareness Week 2014: Boots Opticians adopt Rb Protocol

Boots Opticians is the latest major high street retailer to declare its support for a new protocol on children’s eye cancer, by adopting it in all their stores.

Ben Fletcher, Managing Director, Boots Opticians said: “At Boots Opticians, we know that children’s eye checks are crucial in helping to detect retinoblastoma and other serious eye conditions. When caught early, over 98% of children with retinoblastoma are successfully treated, which is why eye checks for children before they reach school age are vital. We have adopted the CHECT protocol in all of our stores and are proud to be helping to raise awareness of World Retinoblastoma Awareness Week.”

Click here to find out more.

You can download the protocol here. Let us know if your practice is able to adopt this protocol and help with our battle against retinoblastoma at This e-mail address is being protected from spambots. You need JavaScript enabled to view it.

 

Rb protocol supported by the Royal College of Ophthalmologists and College of Optometrists

Leading professional bodies the Royal College of Ophthalmologists and the College of Optometrists are supporting an initiative from The Childhood Eye Cancer Trust (CHECT) to help cut delays in diagnosis of childhood eye cancer. CHECT’s protocol aims to address this by stating that all staff working in an optical practice should be aware of the main signs of Rb and offers clear information on what action to take if a parent is concerned by any of these main symptoms of Rb.

Ashwin Reddy, consultant ophthalmologist and member of the paediatric sub-committee at The Royal College of Ophthalmologists, commented, “We wholeheartedly support the work of the charity in providing much needed guidance to eye care specialists in recognising the signs of retinoblastoma. The Royal College has worked with CHECT on developing this protocol for opticians, to recognise and to refer on. This protocol will help to ensure that children and their family members are given the right information in order to seek further help and potentially life-saving diagnosis and treatment.”

David Parkins, president of the College of Optometrists, says: “Retinoblastoma is a rare but very serious condition and we are pleased that optometrists are making appropriate referrals. This protocol will help other staff who work in optical practices ensure they give appropriate advice to parents whose children may have this condition.”

You can download the protocol here. Let us know if your practice is able to adopt this protocol and help with our battle against retinoblastoma at This e-mail address is being protected from spambots. You need JavaScript enabled to view it.

 

Vision Express logoWorld Rb Awareness Week 2013: Vision Express adopts opticians' protocol

 

World Retinoblastoma Awareness Week 2013

The Childhood Eye Cancer Trust is delighted to announce this Rb week that Vision Express will be implementing the opticians protocol on retinoblastoma in all their stores.

CHECT’s records show that in 2012 100% of opticians 100% of opticians who examined children who had Rb, prior to diagnosis, made the appropriate referral. However, our experience shows that some children face delays in obtaining appointments, or are turned away by staff unaware of the signs and symptoms of the disease and the need for urgent examination.

CHECT’s protocol addresses this issue by stating that all optician staff should be aware of the main signs of Rb and offers clear information on what action to take if a parent is concerned by any of these main symptoms of Rb. The protocol, has been approved by CHECT’s medical advisor Mr Ashwin Reddy, Consultant Paediatric Ophthalmologist and Retinoblastoma Surgeon at Barts Health NHS Trust.

Jonathan Lawson, CEO at Vision Express said: “Retinoblastoma is a debilitating illness that can affect very young children. However, if action is taken sooner rather than later, there is a chance its effects can be minimised.

“The protocol developed by CHECT will ensure all our optometrists and wider staff follow an agreed, uniform set of actions in order that any potential cases can be identified and dealt with as quickly as possible. We hope that other opticians will follow in our footsteps and agree to roll out this protocol across their businesses to ensure we can collectively tackle the disease head on.”

You can download the protocol here. Let us know if your practice is able to adopt this protocol and help with our battle against retinoblastoma at This e-mail address is being protected from spambots. You need JavaScript enabled to view it. .

 

Referrals

If you are unable to confidently rule out retinoblastoma with a red reflex test, or an adequate examination cannot be carried out for whatever reason, NICE guidelines state an urgent referral must be made for children with:

  • a white pupillary reflex (leukocoria). Pay attention to parents reporting an odd appearance in their child’s eye.
  • a new squint or change in visual acuity if cancer is suspected.
  • a family history of retinoblastoma and visual problems. (Screening is necessary from birth.)

 

Depending on local referral protocol, urgent referrals should be made to the local ophthalmology department, A&E or the GP stating ‘suspected retinoblastoma’. Where referral is to the local ophthalmology department we recommend you call through to alert them to this case and to find out the speed with which their urgent referrals are seen (in some cases it can be longer than two weeks).

Download our leaflet on retinoblastoma for health professionals

 

Genetics

Adults who had Rb as a child may require genetic screening when planning a family. For more information on the genetic implications of retinoblastoma visit our genetics section where you will find more information for your patient on the importance of screening in some circumstances. There are two pages you may wish to direct your patients to especially:

Planning a baby
Screening your child

You may find the following Childhood Eye Cancer Trust articles helpful:

Reddy, A (2013) Eye disease - recognising retinoblastoma, GP [online]

Bishop, K (2013) Retinoblastoma: the parental perspective, British Undergraduate Journal of Ophthalmology, Vol 1, Issue 1

paper icon Click here to download this article

 

Become a professional member

For any professional whose work is somehow related to retinoblastoma or people affected by the condition. Join us.