Another cancelled appointment

[Sodalover]

Update

Thank you everyone who responded to my post. Just got home following my private appointment, the consultant was very helpful and is writing to the NHS clinic to expedite more tests and to see a neuroopthamologist, as he’s unconvinced that I have glaucoma, thinks it’s more likely I’ve had a stroke. So it’s wait and see if I get a quick referral or have to seek more private treatment, but I feel today was worth it as I haven’t been convinced about the glaucoma diagnosis from the start.

Diagnosed with glaucoma after losing some sight in my right eye in March this year, I was told it was imperative I attend 3 monthly appointments, I had an appointment in August which has now been cancelled 4 times, should have been going today but yet again cancelled.

I’ve now booked a private appointment for next Tuesday as I feel I just can’t rely on the NHS to see me. Has anyone else had to do this and was it easy to get NHS test results made available to a private consultant?

[KieranGlaucomaUK Administrator]

Hi there. It is quite common for people to go privately with glaucoma and there is nothing wrong in doing so. To get some NHS results, as far as I'm aware, you will need to speak to the eye secretary at your hospital and take them with you. At your private appointment, they will most likely conduct their own tests anyway. I hope all goes well for you at your appointment.

If you need to chase the NHS, then it is best to contact the eye secretary. If you cannot get through to them then you can see if your hospital has an ECLO (eye clinic liaison officer) or speak to PALS (patient advisory liaison service) for some further help.

[Sodalover in reply to KieranGlaucomaUK]

Thanks for your advice, much appreciated

[Gazzaswife]

I just want to say, that is really poor service and I am sorry you are being treated so badly. I hope your private appointment goes well for you, and I would definitely be contacting someone at your hospital.

[Libluce68]

I’ve had the same issues - certainly over the last 18 months - I’d gone 6 months (should have been 3) when I saw the specialist in June this year and he made out it was my fault for not contacting sooner but I had - I tried my GP and rang the eye unit a few times - I was due a follow up appointment in September/October as this specialist changed my eye drops which are causing issues - my GP won’t put me back on the ones I had before and tells me I need to see my specialist to get them changed - GP told me to ring eye unit - I have but can’t get an appointment- like you I’m now going private - it’s all a mess

[VerdiG]

Yes, I was told I needed 3 monthly check ups but didn’t get them. So I started to go to a private consultant. What a relief it was. They did all the usual tests and more at the initial consultation and wrote to my GP with recommended prescription for drops. It was a lot less stressful and more reassuring.I was going 6 monthly but last time things were so stable that he recommended yearly. The eye hospital appointments were very stressful and involved very long waits.

[warwickshire_singh]

I am sorry for you all.

I have nothing but praise for NHS Sandwell and Southwest Birmingham. I am seen regulary in two clinics- Glaucoma and Uveitis (I have Uveitic Glaucoma).

[woodthorpe]

Dear 'Sodalover', The NHS cannot cope with the demand. This increase, related to an ageing population, was predicted many decades ago. I too saw an ophthalmologist privately but he had none of my records from the NHS. I had to send a Subject Access Request to the NHS clinic I'd attended, which I'd recommend your doing also. The optometrist responsible had four weeks to reply. I'm so sorry you've lost the sight in your R eye. For glaucoma, it's so very important to regularly screen for, detect and treat the disease, before it progresses. Yours, 'Woodthorpe'.

[mrswaffle]

I had similar problems. As I was diagnosed 17 years ago, my story is long & complicated, but basically things got very much worse after Covid. If I had stayed with my previous NHS hospital, I would have waited nearly 2 years for an appointment with consultant (or maybe nurse practitioner, who knows). Anyway, just over 2 years ago, I booked to see a consultant privately. He was wonderful & I now see him regularly at his NHS clinic; I don’t know how long this will last but if things deteriorate, I will have no hesitation in seeing him privately. At the private consultation, he hadn’t received a full report on my visual field test, so carried out his own, which he said was better than he’d been led to believe would be the case, by the previous specialist. I am awaiting an NHS cataract op at the moment; my consultant was keen to point out that he would do the operation but the waiting time is not great. (I posted about that last week). I have saved up enough money to have my other cataract op privately, so I feel more in control of the situation. I hope things improve for you, but years ago an ophthalmologist (who I only saw twice & always think of as ‘Mr Angry’) told me ophthalmology was the worst-funded department in the whole hospital.

[Sodalover in reply to mrswaffle]

It’s awful that something so important as sight is so poorly funded. I’m glad to hear so many people being positive about their private appointments, I’ll see what happens on Tuesday. I received another NHS appointment yesterday for 30 December, then this morning a message cancelling yet again, so I’m convinced private is the way to go.

[Longwalks3]

I haven't looked back since deciding to go private for my glaucoma care 6 years ago. There have been so many advantages, including continuity of care and timely appointments. It has given me so much peace of mind as I have advanced glaucoma and cannot afford to lose any more vision.

[Paros]

I always have to chase my local appointments and have just had one postponed by 3 weeks at Moorfields. It's not good enough. 😔

[Sodalover in reply to Paros]

It’s really not good enough, the next appointment offered for 30 December (again cancelled) will mean I’ve waited 6 months for an appointment and who knows how long before I’m actually seen?

[whitedog]

Sorry to hear this and can understand your frustration.

After being under the eye clinic since 2000 it seemed I'd got lost in the system a couple of years ago. Blind in one eye, cataract developing in the other - I was fearful of having to stop driving and work.

Eventually got seen after the GP put through an urgent referral but at the appointment I was asked by a nurse doing my scans if I was a new patient!

[Sodalover in reply to whitedog]

That’s awful, hope you’re back in the system and being seen regularly, being new to all this I’m appalled at the number of people having to make private appointments, and the standard of care being given. The first doctor I was seen by in March made no attempt to tell me what was wrong or give any explanation of glaucoma, just handed me a prescription and said use these drops daily until you’re 99 or you die. I’m really hoping my private appointment gives me some reassurance and explanation of what’s wrong.

[whitedog in reply to Sodalover]

Yes, thankfully! Did get my cataract op done last year and I'm back on the routine appointments but you do have to push sometimes. I wouldn't want to have to go private if I can help it.

Your treatment by that doctor seems pretty poor. I've seen countless people over the years. Sometimes you'll see a specialist optometrist or maybe a trainee opthalmologist. To be fair, most of the consultants I've seen have been very pleasant and charming. But you can get the odd one who isn't so much. Or maybe they're just having a bad day or trying to get through a long list of patients.

Where I am - a city suburb - we have a separate glaucoma clinic now so, at least, when I go there I'm usually seen quite quickly.

Hope your appt goes well - let us know.

[Rainyday2024]

Hello Sodalover, Did you ever get to see Mr Masood in Birmingham?

[Sodalover in reply to Rainyday2024]

Hi Rainyday2024, I saw Mr Bansal at the Meriden in Coventry, who was also recommended to me. Mr Bansal is concerned that I’ve been given a ‘you’ve got glaucoma’ diagnosis, his tests don’t support this, I’m now being referred to a neurologist and will be having an MRI and a CT with contrast. He was particularly concerned about the sudden loss of sight and his finding that I have enlarged blood vessels in both eyes. Thank you for your previous recommendation and for your kind enquiry today.