Notice

Message
  • Why we use cookies

    Our website uses 1 cookie. A cookie is a small file of letters and numbers that we put on your device if you agree. These cookies allow us to anonymously distinguish you from other users of our website, which helps us to provide you with a good experience when you browse our website and also allows us to improve our site. The cookies we use are analytical cookies. They allow us to recognise and count the number of visitors and to see how visitors move around the site when they are using it. This helps us to improve the way our website works, for example by ensuring that users are finding what they are looking for easily. By accessing our website you are deemed to have consented to the setting of the cookie on your device.

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.

 

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 or to This e-mail address is being protected from spambots. You need JavaScript enabled to view it. .

Parachuting and skydiving

Parachuting and skydiving

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.

 

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.

 

National Eye Health Week 2013: College of Optometrist supports CHECT opticians' protocol

This National Eye Health Week (16 - 22 September 2013) CHECT is urging opticians across the UK to adopt its opticians' protocol. Our records show that in general opticians are correctly referring on children with suspected retinoblastoma (Rb). However, 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.

We want to ensure that no child displaying signs of retinoblastoma is turned away from an optician without the correct information about where to go next. CHECT’s protocol aims to address this by stating that all optician staff should be aware of the main signs of Rb. Approved by CHECT’s medical advisor Mr Ashwin Reddy, Consultant Paediatric Ophthalmologist and Retinoblastoma Surgeon at Barts Health NHS Trust, it offers clear information on what action to take if a parent is concerned by any of these main symptoms of Rb.

Speaking in support of the protocol,Dr Kamlesh Chauhan, President of the College of Optometrists said: “Retinoblastoma is a rare but very serious condition. We therefore encourage all our members to ensure they and their practice staff are aware of the most common signs so they can ensure a swift assessment of the child.”

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 Week 2013: Vision Express adopts opticians' protocolWorld 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).

 

 

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.

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.

 

Every squint must be checked with red reflex test

Childhood Eye Cancer Trust calls for all squints in babies and children to be checked with a red reflex test to rule out eye cancer. Click here to find out more.

 

 

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.

 

Rb Awareness Campaign 2013: Health ProfessionalsWorld Retinoblastoma Awareness Week 2013

Figures released from the Childhood Eye Cancer Trust (CHECT) show babies and young children are facing serious delays in receiving life-saving treatment because their symptoms are being missed by frontline health professionals.

The trust has now launched a new awareness campaign after information gathered by the charity on children diagnosed with retinoblastoma (Rb) in the UK in 2012 found 72% of GPs did not make an urgent referral, as recommended in the NICE guidelines.

Read the the full press release here and find out more about our campaign.

Our focus will be on reminding health professionals about the signs of Rb and the need for an urgent referral if retinoblastoma is suspected. When we spoke to parents of children diagnosed with retinoblastoma in the UK during 2012 we found more than 70% had experienced a delay in diagnosis.

We have developed a toolkit for professionals which we are happy to send out to your surgery or clinic. Inside each pack you will find:

We would be happy to arrange for a member of the charity to give a brief presentation to your team if you wish. If you would like a pack or can help us distribute them in your area, please contact us for more information at This e-mail address is being protected from spambots. You need JavaScript enabled to view it.

 

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.

 

GPs

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.

 

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.

 

Direct ophthalmoscopy tutorial

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

 

Rb Awareness Campaign 2013: Health ProfessionalsWorld Retinoblastoma Awareness Week 2013

Figures released from the Childhood Eye Cancer Trust (CHECT) show babies and young children are facing serious delays in receiving life-saving treatment because their symptoms are being missed by frontline health professionals.

The trust has now launched a new awareness campaign after information gathered by the charity on children diagnosed with retinoblastoma (Rb) in the UK in 2012 found 72% of GPs did not make an urgent referral, as recommended in the NICE guidelines.

Read the the full press release here and find out more about our campaign.

Our focus will be on reminding health professionals about the signs of Rb and the need for an urgent referral if retinoblastoma is suspected. When we spoke to parents of children diagnosed with retinoblastoma in the UK during 2012 we found more than 70% had experienced a delay in diagnosis.

We have developed a toolkit for professionals which we are happy to send out to your surgery or clinic. Inside each pack you will find:

We would be happy to arrange for a member of the charity to give a brief presentation to your team if you wish. If you would like a pack or can help us distribute them in your area, please contact us for more information 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 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.)

Urgent referrals should be made 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.

 

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

 

Other issues

Any medical issues related to retinoblastoma and follow-up can be directed to the specialist teams at the Royal London Hospital or Birmingham Children’s Hospital. For more information on these specialist retinoblastoma (Rb) services follow the links below to the hospital sites and genetic screening units.

 

 

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.