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Supporting children with changes in vision

Our Optical Engagement Manager gives his top tips for supporting children who experience changes in vision because of a brain tumour or its treatment.

Hello, I’m Lorcan.

I am an optician who is married to an optician, and we live in Northern Ireland with our 15-year-old daughter. I used to work for a high street optician testing people's eyes and caring for people's families. I enjoyed the fact that, over time, you get to know your customers well and build a rapport.

My role, Optical Engagement Manager at The Brain Tumour Charity, is to make sure high street and hospital opticians understand how to detect brain tumours, and ensure someone is referred for treatment and looked after post-treatment. This is so important because 39% of children diagnosed with a brain tumour experience sight or vision changes. It is a challenging but very rewarding role, which I’m loving.

What do we mean when we talk about sight or vision loss?

Sight loss and visual impairment are much the same thing. It means that someone doesn’t have 100% or 20/20 vision in one or both eyes either with or without glasses. This may be caused by the tumour or the treatment for the tumour. Sometimes this sight loss can be temporary, or it can be permanent.

It's important to remember that not everybody who is affected by a brain tumour will experience sight difficulties or visual impairment. For those that do, the symptoms and severity will differ from person to person, so you may not have the same problems as someone with a similar diagnosis and treatment plan.

Find out more

If your child has sight-loss, you may be in contact with several eye specialist professionals:

• An optometrist or optician (they mean the same thing!) checks your vision to see if they can improve it in any way. They will also look into the back of your eyes to check your eye health and for other health issues, like brain tumours.

• An orthoptist works primarily in the hospital and they look after children who have a ‘turn in their eye’ or a squint, or children who experience double vision. Sometimes they use patches over a child's eye to see if they can get a weaker eye to work better.

• An ophthalmologist is a consultant, eye specialist, or eye surgeon. They are a qualified GP who has spent another seven years studying to become an eye doctor.

How might a brain tumour impact a child’s vision?

Visual impacts for a child can be small or they can be huge. Depth perception, 3D vision, spatial awareness, balance and posture may all be affected due to vision loss.

The good news is that children adapt to change much more quickly than adults. So, children just tend to get on with it to the best of their abilities. However, vision loss can impact children in many areas of their lives.

What support is available for parents and their children?

I would recommend speaking to the Special Education Needs Coordinator (SENCO) at your child's school or your local council’s Education Department. All schools have a SENCO who can help children who are visual and/or hearing impaired. Your child may also be eligible for specialist transport to and from school.

If a child needs further support, you can contact your local Sensory Impairment Team through your local authority. They may be able to help with equipment, technology and teaching braille.

Our Education Resources have information about how a brain tumour can impact vision, suggestions for adjustments schools can make and the legal responsibilities schools have to support children with disability or additional needs.

Some sight loss charities, such as RNIB have a dedicated Children, Young People and Families team, as part of their Sight Loss Advice Service, and they can offer advice and guidance on all aspects of family life, early years, education and transition to adulthood.

Depending on where you live, you may also be able to access support from Children’s Visual Impairment and Habilitation teams (previously known as Mobility and Independence Education) through your local authority. These teams support children and their families who have visual impairments through teaching techniques and strategies to enable children to develop mobility, orientation and independent living skills.

Top tips for finding support from other families

Search and you will find! I would recommend using social media and asking other parents – a great place to start could be our Facebook Support Group for Parents (link). You could also ask your GP or local hospital for local outreach groups. Do not think you are alone, there are other families who are experiencing similar challenges to yours.

Join our community for parents

Using technology to help children stay connected

New technology is always coming out into the market every 3–6 months, so keep looking. The term Assistive Technology is coming to the fore and is forever changing with new gadgets for use at home or school.

Apple Store and iOS have a huge array of free and paid for apps which can be educational, and fun too.

Some technology or equipment may be able to be funded through the NHS or Education, and others will need to be paid for privately or through a grant. You may be able to apply for a grant for the cost of equipment through organisations like Family Fund, who provide grants for computers, tablets, sensory toys and equipment (amongst other items).

Organisations and resources which might be helpful for parents and children

Sightline Directory – The directory for services aimed at helping blind or partially signed people.

RNIB – Answering queries, bringing people together and campaigning for change for people affected by sight loss.

Habilitation VI UK – Striving to change the lives and aspirations of children and young people with visual impairments.

VICTA – Empowering children and young adults who are blind or partially sighted.

If you have questions about your child’s sight or vision following a brain tumour diagnosis or treatment, you can contact our Children and Families team for information or support. We are here to help you.

If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:

Support and Information Services

0808 800 0004 (free from landlines and mobiles)

support@thebraintumourcharity.org

Phone lines open Mon-Fri, 09:00-17:00

You can also join our active online community - Join our online support groups.

About the author

As Optical Engagement Manager at The Brain Tumour Charity, my role is to make sure high street and hospital opticians understand how to detect brain tumours, and ensure someone is referred for treatment and looked after post-treatment.

Media contacts at The Brain Tumour Charity

Press office contact details:

Phone: Mon-Fri, 9am-5pm: 01252 237864
Out of hours media contact: 07990 828385
Email: pressoffice@thebraintumourcharity.org