"SEH Glaucoma Clinic"

I saw doctor at the Glaucoma Clinic late last year. At previous appointment in early 2017 the consultant said if there was no improvement at next appointment, she would do surgery. However, instead, she decided to try a new combination eye drop. One of the drugs in the combination had been tried & stopped previously, which indicates that it may have had adverse side-effects, but there was no reason for the cessation in the record.

The consultant told the registrar to schedule me to be seen in 2-3 months. As I was leaving the waiting area, I noticed the registrar had written for me to be seen again in six months. I went back into the office & pointed out the mistake. The consultant confirmed the 2-3 months for the next appointment. The registrar appeared to change it, I assumed since she'd now been told twice to schedule me to be seen in 2-3 months, that she would do so.

A couple of weeks later, I got the appointment letter in the mail for six months time. I called, and waited on hold for 45 mins. I explained the issue & was told that the appointment was made in accordance with what the registrar had written on the form. I explained that it was incorrect, as the consultant had said I should be seen in 2-3 months. The staff put me on hold to check into it and eventually came back and confirmed that what the registrar had written was wrong & gave me a new appointment, as per the consultant's instructions.  

When I filled the script for the new combination eye drops, I had an unacceptable reaction and was unable to continue with them. There was no point in returning to the old eye drops, as the consultant had said that they appeared to no longer be effective. In addition, when I researched the effect the eye drops had caused I was alarmed to read that the eye drops I had compliantly been using for 12 years contained the preservative Benzalkonium Chloride (BAK) which, according to Rosin & Bell (2013) has been well documented as causing conjunctival inflammation and fibrosis, tear film instability, corneal cytotoxicity, anterior chamber inflammation, trabecular meshwork cell apoptosis, cataract development, macular oedema, and even systemic effects.

Most alarming was that long-term use of BAK-containing drops is associated with glaucoma surgery failure (Rosin & Bell 2013). A recent study showed a dose–response curve for the amount of preoperative BAK exposure and trabeculectomy failure (Rasmussen et al, 2014) – and I had been on two BAK-containing eye drops for 12 years.

My GP wanted to send a letter to the doctor, but I was prepared to wait the several weeks until my next appointment, as I doubted that I would be able to be seen any sooner than my appointment in early February 2018, even though I was concerned at the cessation of both eye drops. My GP prescribed Saflutan, an eye drop without BAK, however I was without any other eye drops to replace the two-drop combo. Concerned at the likelihood of a rise in my IOP (Intraocular Pressure), my GP asked me to go to an optometrist to have my IOP taken, and I did this 3 times. As would be expected, the IOP was raised from the previously acceptable level. Still, I had an appointment for a date in early February, so would be seen in a few weeks’ time – or so I thought. Towards the end of January, I received a text message from SEH telling me that my appointment had been rescheduled to late February 2018.

I received some of my ophthalmology treatment in the US, where I was treated by the head of the Ophthalmology Dept at a medical school in Virginia. He stressed that given the serious vision loss at the time of diagnosis, my age & decades of further life expectancy, he considered any further vision loss would be catastrophic. He also stressed that since I have extremely thin corneas, (a risk factor for progression of vision loss), my IOP should be kept at the lowest possible pressure. So, to have the registrar, in my opinion, ignore the consultant’s instructions to schedule me to be seen within 2-3 months, twice, and then having been scheduled within that time-frame, to then cancel it, and have it rescheduled for 3 weeks later, is troubling. It's even more troubling considering that I was put on a new medication and have several known complicating conditions that could be adversely affected by the new medication, yet there was no allowance for me to be seen sooner, or to be able to obtain advice from the consultant – only a cancelled appointment & rescheduling even later.

I called and explained that the consultant had wanted to see me again in 2-3 months. Now my appointment was being pushed 3 weeks further away. The phone staff went away & consulted with the doctor who had made the decision as to which patients would still be seen on the date in February, and which would be rescheduled to another date. She seemed unconcerned that my appointment had been pushed another 3 weeks away, despite being informed that I had a reaction to the new eye drops and now was not using any eye drop other than the Saflutan, and that my IOP had risen significantly. I was told, if you’re worried about the pressure, you can come in and be seen by the emergency doctor on duty.

I live some distance away, so it takes me almost 3 hours to get to the SEH, where I have been attending since 2005. I know that the junior registrar who would be the most likely person to see me would not have my medical record, and not have the time to thoroughly read it in order to have a reasonable understanding of the situation and the risk factors involved. If that registrar were to consult with the senior registrar, rather than the consultant, then I most likely would have wasted 6 hours of round-trip travelling, along with how ever many hours I waited to be seen at the SEH. In addition, I have multiple chemical sensitivities and serious respiratory conditions that make it extremely problematic to travel long distances by train. The chemicals I’m exposed to on trains cause violent coughing, and this is damaging to my health as well as causing alarm & fear to the other train passengers. I do not have anyone who would be able to drive me to SEH, so if I have to be exposed to the conditions on 6 hours of train travel, I need to know that my visit will not be a waste of time.

To summarize, I have a consultant who appreciates the seriousness of preventing any further vision loss and who I have confidence in her judgment, however on two occasions, her registrar did not carry out her instructions in regard to scheduling my next appointment. Plus, when I did get an appointment within the time frame she wanted, it was subsequently arbitrarily changed to 3 weeks later. The current situation is that I am taking Saflutan in both eyes at night and no other eye drops. My IOP has risen substantially, and I am very concerned at what I feel is the lack of concern about this by certain staff at SEH.