Let's Talk About Brain Tumours

Episode 29 - Spotlight Revisited - National Eye Health Week

• Episode 29

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This episode was recorded in September 2021 but as this week is National Eye Health week we thought we'd revisit this episode where Chandos talks to Optical Engagement Manager Lorcan Butler about the importance of eye exams as these appointments can tell you much more about your overall health than just if you need to wear glasses.

Lorcan talks you through what happens at a typical appointment, what your optician looks out for and some of the health conditions, including brain tumours that can be detected during these eye exams and also what happens if something is detected when you have an eye exam.

You can find out more about how brain tumours can affect your vision on our website here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/side-effects/sight-problems-and-brain-tumours/

If your need support with coping with sight loss you can find information on our website here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/side-effects/sight-problems-and-brain-tumours/coping-sight-problems/

You can contact our support team by calling 0808 800 0004 or emailing Support@thebraintumourcharity.org

Find out more about National Eye Health Week by visiting Vision Matters https://www.visionmatters.org.uk/

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If you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

Sarah:

Welcome to Let's Talk about brain tumours the podcast where we'll be talking to people who have been affected by brain tumour diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates in the brain tumour charity about what we're doing to have the harm and double survival. As this is National Eye Health Week, we thought we'd revisit previous episode we recorded with optical Engagement Manager Lorcan Butler

Chandos:

In today's spotlight episode, we're talking about eye health. And my guest today is Lorcan, the optimal Engagement Manager at The Brain Tumour Charity, we speak about what to look out for how to book an eye test, and also the support that's available to you to ensure that you get the best quality of care. So can you start by telling us a bit about you and what your role is?

Lorcan:

Yeah, of course. So my name is Lorcan. And I'm an optician and my role within the charity is what's called an optical Engagement Manager. So my job is to engage with the optical community in the UK. So the optical community or opticians, opticians mainly in the High Street, in your local optician, but also opticians who are undergraduate students, and also maybe opticians you encounter in a hospital too, as well.

Chandos:

And why is it important that opticians know about brain tumours and about the impact they have? Yeah, approximately

Lorcan:

30% of people with brain tumours will actually have visual symptoms at some stage during their diagnosis. So that can be blurry vision, it can be a change in the vision, it can be double vision. So we need to be very, very aware of what to look out for.

Chandos:

And in terms of people who are looking to get the eye exam done. Why is it important for them to go and get them checked?

Lorcan:

Sometimes people aren't aware that we can detect brain tumours through an eye examination. So normally, what would tend to happen as people go to their GP, and maybe go back three, four or five times, and the GP maybe doesn't mention about going to the optician to get their eyes checked. So sometimes people don't automatically assume opticians are able to detect brain tumours, but we do spend three years in college as a specialist subject. And we are trained in the early signs and symptoms. And if we do detect something which is irregular, we can refer straightaway to a hospital department for further assessment to as well.

Chandos:

And can all brain tumours be detected in an eye exam?

Lorcan:

Yeah, I get that asked quite a lot. Chandos and unfortunately, the answer is no. So depending on whereabouts the brain tumour is and also size, it could be quite a small tumour, unfortunately, we may or may not be able to detect it. The ones which do affect the back of the eye, they're quite easily to detect, and also ones which may be affected by person's vision. People sometimes know themselves, they may not be able to point a finger at it, but they can say something's not right and concerned, it's not myself, etc. So you have to go by patient's symptoms, as well. So but sometimes the answers yes we can detect into your brain tumours through an eye examination. But sometimes the answer is no.

Chandos:

And so is it important for people to tell their optician the symptoms they might be experiencing?

Lorcan:

Yeah, very important so, what'll tend to happen is sometimes people will have other symptoms in their body or their mind. And sometimes they will want to mention these because they don't think it's a possible sign are often related to a brain tumour. So sometimes people will have cognitive issues, so maybe memory loss or confusion, sometimes there can be difficulty with their hearing, they'll hear ringing in their ears. If the do the brain tumour affects, the eyes, weight gain, weight loss, change in personality, and people not being themselves are very important. So these are kind of red flag signs and symptoms that can easily be described by the patient, but also by their loved one by their parent or spouse or partner, or family member, if they say he's not himself, he's very lethargic, he's gone into himself very depressed. He's normally the life of the party that just isn't himself. These are the things we take into consideration.

Chandos:

And so what question should someone look out for from an optician that they should expect the optician to ask them?

Lorcan:

Yeah, we asked them a series of questions such as What are your symptoms? When did a start? Are they getting better? Are they getting worse, then we ask them about their general health conditions. So this can be if you have any medical conditions at the present moment, but also something in the past. So maybe somebody had a previous episode of cancer when they're younger, they do have a slightly higher risk of developing cancer and a brain tumour later in life as an adult. So especially if a female had breast cancer or a male had prostate cancer, we'd need to know. We also asked medications. So sometimes people can describe visual disturbances and we need to know what medication they're taking, just in case it is caused the medication. And then we asked about the family history. So does mom dad brothers and sisters have any eye conditions or have any medical conditions and again, if you said my mom had a brain tumour, or my dad had a brain tumour, we'd be taken into consideration too, as well.

Chandos:

And there's obviously a lot of information that goes goes we're having a brain tumour diagnosis, and it's hard for I know, it was hard for me to process all that information. So can someone take notes when they go for a checkup?

Lorcan:

Yeah, something we highly recommend Chandos, so bring a friend. We do have what's called a chaperone policy And what is the cost of an eye exam for someone in the so you can bring a friend in with you. And they can ask the questions and answer your questions on your behalf. different parts of the country? Sometimes people do have difficulty with confusion or Yeah, good question. So in Scotland is free of charge to memory issues. So it's always easy to write things down. Nowadays with the advent of mobile phones. They do have recording ability. So sometimes people just say listen, I'm going to record this on my mobile. I'm going to write this down to share it My family and friends would that be okay? And the answer would always be yes. everybody. And in the UK and Wales, Northern Ireland, Northern Ireland, it depends on your age, anybody under the age of 16 gets a free eye examination, and they tend to have recommended intervals. So it's a yearly interval up to the age of 16. And that's every two years for people over the age of 16. And full time education. The cost of an eye examination can vary depending on where you live Chandos, sometimes it can be free of charge, sometimes anything from five pounds, to 100 pounds, depending who you go to. And there are some classifications which would be eligible for a free eye examination such as diabetics who are a bit more prone to developing eye conditions. And people have got a family history of glaucoma, that's an eye condition that people lose their peripheral vision for does tend to be a family history.

Chandos:

And if an optician, notices or detects anything in their checkup in the person will they refer, refer them on or they tell the person?

Lorcan:

Yes, depending on the severity of the urgency, if we think it's a very urgent referral, we can refer directly to the hospital, they will pick up the phone and speak to the hospital and say, I think I need to send somebody down to us straight away for further assessment. If it's just more of a routine referral, I want something to be checked out but it's not urgent doesn't need to be done with the next one day, one week, one month, we can do a referral back to the GP and ask the GP to send a referral onwards with the advent of electronic referrals now, the majority referral to done online. So what happened was we used to do referral to a GP, the GP would pass on to the hospital. But thankfully now due to telemedicine, it can all be done quite quickly in house.

Chandos:

And I know that National Eye Health Week is coming up. What is it?

Lorcan:

It's a great public platform to explain to the general public about the importance of getting an eye examination. So not many people know that we do other things apart from sight glasses and contact lenses and sunglasses. So we are trained to detect conditions such as high blood pressure, high cholesterol, diabetes, and brain tumours. So we tend to use this week to promote regionally and nationally, about the importance of an eye examination and the important things we can detect and save people's lives such as a brain tumour which can be both sight threatening, and also life threatening.

Chandos:

And what are some of the activities that are happening,

Lorcan:

lots of public activities and so usually tend to fight on Good morning TV and six o'clock BBC News ITV News to be representative from our professional bodies, talking about the importance of an examination and they'll sometimes use a case study such as maybe somebody who was diagnosed with high blood pressure, or maybe somebody whose diagnosis from multiple sclerosis came via an optician and a duty tend to kind of be quite uplifting story of saying that I hadn't gone to the optician, I may not be here,

Chandos:

and how is this linked to the brain tumour charity and the work that the organisation is doing?

Lorcan:

We're just trying to dovetail with the National Eye Health Week to promote the importance of eye examinations and also to the importance of brain tumours. So sometimes people are afraid to mentioned, I think I may have a brain tumour or my family history of the brain tumour. So we're using National Eye Health Week to promote the importance of eye examinations, but also to use maybe one or two case studies of people that we have in the charity who have a personal history of a diagnosis through an optician, and they have had had a brain tumour. So if it wasn't for the eye examination, they may or may not have been detected.

Chandos:

And obviously with the last year in the pandemic, it might be difficult for someone to go out of the house and to go and visit an optician. So can an eye test be done at home? And if someone is experiencing sight loss, what

Lorcan:

Yes, it can again, this geographical location Chandos that we call them domiciliary eye examinations. So what can happen is one of the leading providers of domiciliary would be one of the larger High Street chains, and you can contact them support is out there for them. and ask Would it be possible for somebody to come out and do an There is lots of support and again it's going to vary eye examination on myself or my partner or my family member that depending on whereabouts in the UK you are Chandos There tends need to get authorization from the local NHS or CCG trust to do that, and then they can perform an eye examination in your home in the comfort of your own home. And also spectacles are acquired when they're made up that can be delivered to your home. So it gives people reassurance and peace of mind that just in case they are scared of going out, but that does have to be a medical reason for the the optician to visit such as they are restricted their bed or they're isolating etc. So it will be COVID restrictions. to kind of be local support and your local NHS sensory support centre so it might be your local hospital your a&e unit, there might also be an NHS century support service and also your GP will be a good point of contact and also your local high street optician. So or an IB would tend to be one of the largest well known charities and they would tend to have drop in centres, local centres and they also have a support line too as well, which is manned by people who can help people who have been affected by brain tumour and sight loss.

Chandos:

And if someone has been affected by a brain tumour and sight loss, could they expect their vision to return or to get better?

Lorcan:

It's a very difficult question to answer Chandos and again I get this asked all the time. It tends to be a guarded prognosis. If people's vision does deteriorate, we'd like to hope it can return but sometimes it may not and that can be a difficult pill to swallow too as well. We'd always like to be optimistic. But unfortunately, if there is damage to the vision, unfortunately it may or may not return on this can be difficult to speak to a person too as well, especially if they're a driver and they may not be able to meet the driving requirements. And that may mean they may lose a driving licence.

Chandos:

And if you have lost a driving licence, what vision checks do they need to get done before reapplying

Lorcan:

what they have to do is apply for the licence through the DVLA. And they'll be sent an application form to bring to the local optometrist, local optician. And they'll have to check to make sure that can satisfy the DVLA driving requirements, which is read in a number place at 60 feet 20 metres, and also having a good wide peripheral vision. So sometimes people's tumours can affect their side vision. And this if if that's detected, then that would be a bar or restriction to drive in. So you have to have good clear peripheral vision on both sides for both your safety and the safety of other road users too, as well.

Chandos:

And I know that the charities that are researching it invested a lot in in eye health and awareness for sight loss, have they found any significant breakthroughs or do they know of any that will help

Lorcan:

not at the present moment, just early detection or early prevention, patient education. And that's part of my job. Also part of my job is to help people who do have visual problems. So if somebody phones up on the support line, and they have visual concerns, they'll usually be passed through to me and hopefully I can guide them. But in terms of research, people always ask me, Is there anything new coming through? But unfortunately, it does tend to kind of be quite small steps at the moment. Well,

Chandos:

thank you so much for chatting with me today. It's been really amazing to hear what the charity is up to and the work that you're doing. So thank you.

Lorcan:

You're very welcome. Chandos Thank you for asking me.

Chandos:

Thanks again for listening to this episode of the brain tumour charity podcast. And don't forget the team is here to listen support you and help with all the information you might need in contact them using the email support at the brain tumour charity.org Or you can call them on 0 808 800 Triple 04 That's 0808 800 Triple 04 You can also visit the brain tumour charity.org For more information on the support that's available to you.

Sarah:

We hope you enjoyed today's episode. Don't forget to subscribe to the podcast so you'll never miss an episode. If you'd like more information, you can visit our website at brain tumour charity.org or email our support team at support at the brain tumour charity.org And finally, before you go if you enjoyed this podcast, please can you leave us a review on iTunes or wherever you get your podcasts so we can reach more people and raise more awareness