“We will always be grateful that Charlotte recognised the signs when she did”

Harper had been experiencing double vision as well as a noticeable turn in her eye, and after tests elsewhere, Murray had booked with Bennett & Batty Opticians for a second opinion.

Looking back on the appointment, Murray said: “I can honestly say that Charlotte’s thoroughness, professionalism and willingness to listen saved Harper’s life.”

OT spoke with McCombe and Murray about the sight test and referral that led to Harper’s diagnosis of a brain tumour.

What did you identify during the sight test and what was your reaction?

Charlotte McCombe, optometrist across five Hakim Group independent practices (CM): Harper was booked into the last eyesight test slot of the day. She presented with right esotropia and her only symptom was double vision that had worsened recently. I refracted her as I usually would and the eye turn acted as I’d expected it to on cover test.

However, on Volk examination I noticed there was significant bilateral optic nerve oedema with haemorrhaging, which indicates papilloedema. I was shocked to discover that because Harper had not reported any of the usual symptoms of papilloedema like headaches, vomiting and pain.

Bennett & Batty Opticians

How did you approach explaining what you had identified/suspected?

CM: I explained to Harper and her mum that when looking at the back of her eye I had noticed that both the optic nerves were swollen and bleeding. Harper’s mum asked what this could mean and I let them know it could indicate a neurological or brain issue which needs immediate medical attention so that further investigations can be carried out. I find in situations like these, when breaking bad news, it is important to be mindful of the language you use as it is often a really sensitive topic.

I think it is important to try and not use too much medical terminology, particularly because our job is to refer to investigate further, so we’re not diagnosing.

What were the next steps that you took, and what was the significance of these steps to this case?

CM: I let Harper and her mum know that I was going to write a letter explaining what I had found during the eye test, which I gave to them and explained that they needed to take to A&E at Alder Hey Children’s NHS Foundation Trust immediately. Papilloedema is considered an emergency because it can indicate serious, often life-threatening issues, which all require immediate medical attention and treatment to try and prevent damage to the nerves or vision. Harper had been to A&E already the day before, so they were aware of her, and I advised going straight down with the letter.

I was mindful about the language I used. I try and explain things in layman’s terms, saying that it is a brain issue that required immediate medical attention so that we can find out why the optic nerve is swollen and why the eye turn was worsened so quickly.

As a clinician you can suspect what might be behind it because realistically for Harper it was likely to be something slow-growing because she had no emergency symptoms. It is likely to be something that has come on gradually. It comes with practice as a clinician to know what words feel appropriate to you.

When did you hear about the results of your referral and how have you been involved since?

CM: One of my colleagues followed up with Harper’s mum a few days later and when they called, Harper was in brain surgery. It turned out that Harper had been diagnosed the evening after the eye test with a posterior fossa brain tumour and hydrocephalus. She’s had three brain operations and requires a lifelong VP shunt to help with the raised intracranial pressure.

Harper still has double vision, which is being treated with alternate eye patches and she also had discoordination, so she needs specialist neurorehabilitation. Harper’s family are raising money to support her recovery journey and at Bennett & Batty we’ve set up an in-store donation box to encourage the local community to support her as well.

The team at Bennett & Batty sent her gifts to show we were thinking of her. Harper was so thoughtful that she sent flowers to us with cards and a voice note to thank us. She has even come to see us since she got out of hospital, which is so lovely.

It has been an emotional time for everyone. Harper was a competitive dancer – she loves dancing and wants to get back to it as soon as possible. It does tug on the heartstrings.

I saw her grandfather recently – he lives slightly further away but made the effort to come in for an eye test to us because they really trust us to look after them. It is a nice feeling to know that you are trusted to care for someone.

Nicola Murray

What are your three top tips for other practitioners when making a referral?

1. Have a patient-focused approach. Act with empathy and compassion at all times and have your patient’s wellbeing at the centre of your focus
2. Always investigate each case thoroughly. For example, with Harper, strabismus was not something I had previously linked to papilloedema, which just shows it’s important to not diagnose based on initial presentation
3. Strengthen your clinical knowledge whether you are newly-qualified or have been practising for years. Actively expand your clinical skills and ensure your advice is always up-to-date. I would say that is important.