“My trip to the optometrist resulted in me being diagnosed with lupus”

When Amandeep Bains, from London, first developed symptoms including a rash and joint pain earlier this year, doctors initially suggested these were caused by eczema and arthritis. But as her symptoms progressed to include headaches and dizziness, her diagnosis was amended to coronavirus.

Following a conversation with Satvinder Shoker, principal optometrist and owner of Kings Hill Opticians, Ms Bains attended the practice for an emergency appointment that led to an urgent referral, eventually uncovering a blood clot on the brain and leading to a number of long-term diagnoses. Ms Bains and Mr Shoker told OT about the experience.

Before you went for a sight test, had you experienced any symptoms and how did this affect you in day-to-day life?

Amandeep Bains (AB): Before I visited Kings Hill Opticians I was suffering from blurry vision, headaches, large floaters and vision blackouts throughout the day. This impacted my life as I could no longer do my usual activities, such as driving my car and using the computer whilst I was working from home, as my vision was exceptionally impaired.

How has COVID-19 changed the way you accessed the services you needed from your optometrist?

AB: Satvinder has always been accessible throughout the pandemic. On hearing my situation, Satvinder insisted I attended the practice to be seen immediately.

What did the optometrist find, and how did they explain the next steps to you?

AB: Satvinder found that I had extremely swollen optic nerves and there were a large number of haemorrhages behind my eye. He explained that there was a build-up of pressure within my brain which could explain the swelling behind my eyes and this was impairing my vision. Satvinder was also worried about the haemorrhages which he noted on my retina. He explained that I may need a lumbar puncture to relieve the pressure.

He insisted that I went to Prince Charles Eye Unit in Windsor as soon as possible. Satvinder stressed the urgency to me and provided me with a referral letter and copies of the pictures and scans he took to show the ophthalmologists at Prince Charles.

Can you describe how you felt during the referral?

AB: I felt very concerned but pleased I had some answers to my ongoing symptoms.

I am grateful to Satvinder for giving me the first diagnosis of many. I can now get the treatment I need

Did you have to undergo further treatment and what has been the outcome?

AB: The doctors performed an MRI, CT scan and numerous other tests as well as a lumbar puncture, as the spinal fluid levels were high. This, along with acetazolamide medication, reduced the pressure behind my eyes.

I have been undergoing ongoing treatment for my lupus and antiphospholipid syndrome which I was later diagnosed with, thanks to being referred.

Have your views on the importance of sight tests and eye care changed as a result of this experience?

AB: Now I realise the importance of eye tests. I am now aware that an eye test can reveal other health issues which you may not be aware of. My trip to the optometrist resulted in me being diagnosed with lupus and answered many questions of symptoms which were undiagnosed by my GP.

How has the experience changed your life or impacted you?

AB: This experience has greatly changed my life. Being diagnosed with lupus, I am on an aggressive course of immunosuppressant medication and blood thinners. This makes me more vulnerable to COVID-19, therefore I have to be very cautious and limit leaving my house. This has affected my social life as I can no longer socialise with friends and family as I would usually. I am grateful to Satvinder for seeing me at such short notice and giving me the first diagnosis of many. I can now get the treatment I need.

I was even more concerned when I saw multiple retinal haemorrhages in the peripheral retina, unlike anything I had seen before

How has COVID-19 affected your practice, and how did you adjust your services/approach to be able to meet the needs of your patients, such as in this case?

Satvinder Shoker, principal optometrist and practice owner at Kings Hill Opticians (SS): COVID-19 created a lot of new admin for our already busy practice, meaning that we had to initially understand and then implement all the new regulations that have come up since lockdown.

We have always focused on providing quality eye care and the recent pandemic has created a lot of work for us optometric practice owners. We have had to quickly brush up our knowledge on policies regarding infection control, HR advice, disaster management co-ordinating and finance planning. I don’t recall any of these training modules being part of our optometry degrees.


We wanted to remain open during the initial lockdown to offer emergency and essential eye care services in line with all the new regulations. Fortunately, since the practice is owned and run by me and my wife, we managed to take the reins of the practice and continue to operate the emergency eye care service for patients, whilst also administering the delivery of contact lenses and spectacles for all our loyal patients.

In addition to this, I was operating a triage and management service on behalf of the local eye hospital, Maidstone and Tunbridge Wells NHS Trust who were operating phone triage for patients rather than being able to see them face-to-face. I was asked to expand my services to see Anti-VEGF (anti-vascular endothelial growth factor) patients who needed optical coherence tomography (OCT) scans to see if they are still active and still required injections.

How did you interact with the patient and carry out the sight test?

SS: The eye test was performed at the end of my clinic with all the relevant personal protective equipment (PPE) that we are all now used to wearing. I asked Amandeep to come in at the end of the day to adhere to social distancing within the practice and allow me the time to perform all of the necessary tests.

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

SS: I noticed that Amandeep’s vision was mildly reduced to 6/7.5 right and left, where previously her vision last year had been 6/5 right and left unaided. I performed retinoscopy before fundus examination, and to my surprise I noted a hyperopic prescription of about +2.00DS. Previous refraction/retinoscopy was only +0.50DS. Her best corrected vision was also restricted to 6/6 with the hyperopic prescription corrected.

Naturally my suspicions were raised when I noticed the sudden hyperopic refractive change for a [then] 22-year-old. When I examined her fundus, I noticed a sluggish pupil reaction and then I was alarmed when I saw papilloedema in both eyes. I was even more concerned when I saw multiple retinal haemorrhages in the peripheral retina, unlike anything I had seen before. Due to my experience of working in a medical retinal clinic at the hospital, I was able to rule out the common vascular abnormalities that one would suspect.

I performed OCT which demonstrated that the papilloedema was so severe, it had caused traction on the macula and foveas.

Colour vision was reduced, and I was unable to demonstrate any desaturation to a red target, which left me confused about whether this was severe case of papillitis. I was unable to perform a field of vision test as I had decided to dilate the fundus for an in-depth fundal examination.

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

SS: It is always hard to compassionately explain your suspicions and findings rationally to any patient. It is even harder when it is your niece and your cousin’s sister (Amandeep’s mother).

I calmly explained that the signs suggested further investigation from the hospital was urgently needed, as there were signs of severe inflammation within her cardiovascular system, demonstrated by the ocular findings.

I was relatively confident that this was not an ocular condition, and I was not suspecting a brain tumour of any sort as this would not explain the haemorrhages noted. I explained that she needed to be prepared for a possible lumbar puncture and investigations including MRI and CT Scans.

I arranged for a temporary pair of spectacle lenses to be supplied to Amandeep to correct her hyperopia and to help her cope with the imbalance in her vision that was troubling her so much. These were made up in our on-site lab whilst I prepared a letter with all the images for her to take to the hospital.

As optometrists, we are experts in the art of refraction. Always make sure the refraction is as accurate as possible

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

SS: I called Amandeep the next day, a Friday, to see how she was. She had been in the hospital since the afternoon and they were still doing tests. Later, I got a call from Amandeep who was on her way home at around 9pm.

She explained that she had been started on steroidal based tablets and she had not had a lumbar puncture as it was not really discussed at the hospital. She was due to go back the next week for further tests. I was surprised she was on her way home and assumed that in light of the pandemic, this may have been the new way to do things.

I got a call the following week from Amandeep’s mum who said a neurosurgeon had seen the results and summoned her back to the hospital urgently. They performed an MRA scan which revealed the aneurysm that led them to perform a lumbar puncture that evening and identify the issue.

I arranged to see Amandeep five weeks after her initial consultation as she suspected her vision was changing and she had not had a follow up from her local ophthalmologists whilst her blood levels were being treated.

I was once again surprised to see a large pre-retinal haemorrhage in her left eye, which Amandeep described as a floater she had recently noticed. I was pleased to see the refraction was reducing and repeat OCT scans revealed a reduction in macular traction and the optic discs swelling had reduced. I repeated the images and OCT scans for Amandeep with a covering letter to present back to the ophthalmology clinics in Windsor, because, although her general health condition was now being dealt with by the relative physicians, she needed further ophthalmological management for the retinal findings that appeared to be worsening.

What would be your three top tips to other practitioners when making a referral, either generally or during COVID-19?

SS: Ensure that all examinations are performed, from simple things like retinoscopy, colour vision and refraction. I would say that my previous retinoscopy result, compared with the new retinoscopy finding, was the key in helping me plan my management for Amandeep. It is a real shame when I come across a number of optometrists who now solely rely on auto-refractors for their initial refractions and are no longer comfortable doing retinoscopy.

Always describe what you see in your referrals with the most useful accurate detail and images possible. So often, practitioners will have already decided what they think is going on and this will influence their decision-making skills and they then omit vital simple information that can allow for more accurate management.

As optometrists, we are experts in the art of refraction. Always make sure the refraction is as accurate as possible. Amandeep’s chief complaint was that she could not see properly. Despite all the findings, it is important that she can go day-to-day with the ability to see. I therefore arranged for her to walk away on the same day with temporary spectacles allowing her to see for the next few weeks while the hospital investigated the findings.