I’ve only had glaucoma for 3 years or so but haven’t had a great experience so far.
As with most people waiting times at my local clinic are chronic and the care hasn’t been great either. My vision was deteriorating for 18 months with treatment, was stable for about 6 months but now seems to be deteriorating again.
I’ve paid for a private consultation at the beginning of the year and got referred back to the NHS but the consultants had a differing opinion on how treatment should proceed. I would have rather stayed private but didn’t have the money unfortunately. Has anyone else been in the situation where consultants have had different opinions and what happened?
I’m not even 50 yet and have lost 50% of my vision.
Also does anyone know anything about pip and is it with going through the process to apply for it?
thank you all,
Jones x
Written by
Jones7777
To view profiles and participate in discussions please or .
I cannot directly answer either of your questions, but I have a suggestion nevertheless.
My background is that I was diagnosed 20 odd years ago with Glaucoma, have been treated , always by Travatan drops, never surgery, under the care of the superb Royal Sunderland Eye Infirmary ( I believe this is considered to be the North's answer to Moorfields ).
My understanding is that my level of vision loss stabilised early on with the drops treatment, and has not deteriorated, so I am in a more fortunate position ( touch a forest of wood ) than you, at least at this writing.
Until 2023 I was always seen every 6 months for check up / monitoring to ensure my condition was not worsening.
However, the last time I was seen was August 2023 ( and then by a Nurse Practitioner rather than the Consultant ) and I have had to email the Consultant's secretary to press for a new appointment. This has now been given for February 2025 ~ so then it will be 18 months since the last appointment. I doubt that I would have been given the Feb appointment if I had not pressed for it.
This represents quite a deterioration in service , an 18 month gap between monitorings, instead of the 6 months gap which was the case for 20 years. I understand this is all down to pressure of work : there must be more patients diagnosed / presenting than was the case.
Are you aware that you can email the secretaries of the Consultants who had seen you, and you can ask the Consultant/s questions via the emails, and expect a reply ?
From a combination of the relevant hospital website ( which will List your Consultant ) and the hospital switchboard you can ascertain the direct email address of the secretary ( s/he may be secretary for more than one Consultant, but no matter ) and simply engage with the Consultant /s in this manner.
Having ascertained the direct email address of the relevant secretaries I would email both of them setting out the two x Treatment Recommendations which you have received, and ask that Consultant's advice as to how s/he recommends that you proceed, having received conflicting recommendations.
Is the Consultant able to explain the different pros and cons of the two Treatments being recommended ?
Is one of the Treatments more conservative than the other ? I.e., would it be sensible to first try the ?simpler procedure, and would that leave an option to try the other procedure if the first one did not succeed ?
Or are the Treatments mutually incompatible, and you have to choose one or the other ?
If you receive no reply within one week follow up with 'phone call /s and insist on a reply. If necessary go to the Secretary's office and follow up the inquiry in person.
If this doesn't clarify the issue of what treatment to proceed with I would do whatever necessary to seek out very urgently yet another Consultant's opinion ( ie end up with a ' best of three' decision, perhaps ?)
DON'T dither about sending the emails. This costs nothing, and may even get you an answer.
Thank you for this. I’ve tried several times to contact the eye Secretary at the RVI where I’ve been treated since 2022. I never thought of emailing them, but I will give that a try. I’m still awaiting a new appointment after they were concerned about my pressures in the summer if this year. I had to make a formal complaint after that experience, when I couldn’t get an answer about treatment and dealing with a new eye drop.
In the end I went to see Nick Wride (of Sunderland Eye Infirmary) privately and he gave me some advice and reassurance. I had been pondering asking my GP to refer me to Sunderland instead of the RVI, but it sounds as if they are in the same chopsticks situation at the moment,
If I were in your situation with a condition which may be deteriorating, I would get back to BOTH Consultants you have seen ( via email, as described ) and ASK them if they can give you pointers as to how you decide WHICH recommendation to follow, you being a layperson in the matter.
I would do this before lunchtime today.
If no reply within 5 working days I would physically GO TO the Secretaries' offices and ( as politely as possible ) stress the urgency.
I would also think about researching the relative experience / qualifications of the two x Consultants you have seen ( I think there is a NHS Consultants' website where this can be done. Or it may be that the two hospitals' websites list their Consultants' quals / exp. ).
It may be that one of them seems better qualified / experienced than the other, which might help decide whose opinion to prefer.
I would go 100% with Nick Wride, who is an acknowledged expert, there is no info online about the guy who is head of Glaucoma service at the RVI, but unfortunately I cannot afford to go fully private.
I can press all I can for a reply, but if the service just isn’t responsive, it’s a waste of time.
I’m in the same boat as you; forgotten by the NHS during the pandemic, stable glaucoma became uncontrolled. That was 18 months ago.
NHS in Surrey seem pretty much back to normal but the consultant I now see has a diametrically opposed view to the private consultant I’ve been seeing. To the extent that my private guy “wouldn’t recommend” the NHS course of action.
NHS says my condition is progressing he says it isn’t. But the NHS test conditions are awful. There’s now two sets of equipment in every room so you're doing scans and visual field tests with open doors and another patient beside you.
All that to say I left my NHS appt on Monday completely confused. So, rather than spend another four months wondering, I have booked a third opinion, a consultant I’ll be seeing early January, as Rhys suggests you might do.
It’s incredibly frustrating to have to incur more cost but it’s my eyesight (I’m 56) and I need it for a good few more years.
PIP - I highly recommend the Disability Rights UK benefits Handbook, in print or online. It goes into detail of how many points you need in the eligibility criteria they consider. They also produce a PIP guide which is cheaper, the rules, scoring system etc, but I don’t have experience of that.
Hi, I've had a bad experience in my local hospital after moving from a London hospital where my glaucoma was being well managed for years. Locally I was misdiagnosed on other eye related matters and my glaucoma at one point. I saw a private consultant to get a diagnosis and treatment plan. I used that report to get a referral on the NHS for a second opinion. This has given me more confidence to navigate my care locally and i found out what I didn't know before is that we are entitled to a second opinion within the NHS.
Like a lot of people I’ve had the same issue with appointments, I was only diagnosed in April this year, I’ve lost a lot of sight in my right eye, left eye is fine. I was told I needed 3 monthly appointments, 4 appoints were cancelled with the next appointment for 30 December, when this too was cancelled I booked a private appointment. The consultant was really thorough and questioned some of the conclusions made by the NHS clinic, he was not even sure that my problem was Glaucoma. He offered to write to the NHS clinic and discuss my case with them. As a result I’m now booked for an MRI and have had the appointment for 30 December reinstated.
Perhaps you could speak to the private consultant and request that he contact the NHS consultant to decide the best course of treatment?
Hello, You have my sympathy. I seem to remember a few weeks ago joining a webinar hearing Professor Dan Calladine speak about Ocuplan an organisation to which glaucoma suffers may pay in a minimal sum each month to obtain private medical treatment.
If my memory has served me correct, it seemed to me a good idea, would the admin team at Glaucoma.uk have any information about Ocuplan please?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
A bit about me 
Vision in the recovery weeks ( and long term) after a trabeculectomy.
Should I wait more than 3 months?
Advanced Glaucoma....worried sick...
