Annual Glaucoma checkup?

[Quantam]

I was getting an annual checkup but over the past two occasions it's been a year and two months and now this year I am still waiting after a year and six months with no communication from the hospital at all!My GP said they would chase it up but still nothing, I am going to Specsavers this week and will have to pay to get my pressures checked, is this the new normal?

[Anonoms]

It could be normal if you are stable. Guidance has changed. Sadly it can also be the new normal for people who are not stable. The advice to ring the hospital isn't sufficient. 3 years ago letter from glaucoma qualified optometrist alerting hospital to new 20 per loss of visual field in April did not get appt scheduled till August. Outcome urgent surgery. More recently appt due in April on six months intervals not seen until July on the back of optometrist letter letter indicating raised pressure. Outcome more surgery needed. Really there needs to be an investigation into who is being parked on virtual clinics who shouldn't be there . Other health charities are monitoring patient delays via freedom of information requests

[Quantam in reply to Anonoms]

Thanks for your response and some very important points raised. As you know with glaucoma you do not realise you are losing your sight until unfortunately it is going or gone. Patients such as yourself need to be prioritised. My glaucoma thankfully at the moment is slow progression and I have a pressure checkup at the opticians 6 monthly one of which I have to pay for!I suspect the situation is now as you say in such a state that people are losing sight whilst they are on waiting lists for treatment.

If they can't cope they need to refer patients who urgently need treatment to the private sector which really pains me to say!

What is your view Glaucoma UK?

Is it worth writing to our local MP or are you already communicating with the NHS and government?

[KieranGlaucomaUK Administrator]

Hi there. It is tricky as sometimes the hospitals fail to communicate with patients effectively. If you have not heard from them, then you do need to chase it up with the eye secretary so they can resolve this for you. You can also speak to the PALS department if you are not able to get an appointment. Many hospitals also have an ECLO now (eye care liaison officer) who you can also speak to about this.

In regards to your comment below in reply to Anonoms, yes you can write to your MP as it is always good to raise awareness of this issue despite our efforts at Glaucoma UK.

[Quantam in reply to KieranGlaucomaUK]

Thanks Kieran useful advice, I will pursue all of those recommended channels!

[Anonoms]

Just to say. Bumped into friend who had to chase after 3 years without an annual appt.

[Quantam in reply to Anonoms]

That's atrocious!

[Sufitzy]

I generally call the hosp direct but spec savers are good too as they can send an urgent referral through if needed

[Libluce68]

I am having the same issues and like you in the end went to SpecSavers who referred me on to the hospital because my pressure was high - it took another 3 months before I was seen. The specialist when I saw him changed my eye drops and wrote to my GP saying I contact them in the future if I had concerns (I did) making out it was my fault. 🤷🏼‍♂️

[Delph1]

You shouldn't have to pay to have your eye pressure checked if you have glaucoma. Glaucoma patients and their relatives are entitled to free annual check ups at opticians

[Sorshup in reply to Delph1]

Yes and no; the NHS will pay for a standard "sight test" annually for glaucoma patients, and you can expect a pressure check (and a referral if warranted) then. But the optometrist is not able to provide more care than that through the NHS. However you and the optometrist can agree to have regular attention, IOP, visual fields, OCT imaging whenever you like but it will be at your own cost.

[Nala2509]

I have experienced the same issues. I should have a check up every 3 months and it was 9 months between appointments last time. I spoke to the doctor about it at my last visit and his advice was ‘you must chase it after a couple months’

Yesterday I spent an hour waiting to speak to the appointments team and last night received my next appointment within the 3 months I need.

Please chase appointments, it is so important.

[RunnerWithPG]

I've recently had the same issue. Following the sudden loss of most of the sight in my right eye I had trabeculectomies in both eyes in late 2022, early 2023. I'm now supposed to have 6 monthly appointments, but haven't seen a consultant in over a year. I recently chased this up, and have now had an appointment for a fields test and was told to expect an appointment to see the consultant in 6 - 8 weeks. Luckily, I have my own iCare tonometer, so I'm able to monitor the pressures myself - but losing sight in my left eye would be disastrous for me, so I need to be checked.

[MaggieKing]

My local optician does not charge me for any eye tests, including the OCT scan (Specsavers charge £10 for that, even though I have glaucoma). Specsavers is a franchise so they have no choice whereas a small independent business can be more customer focused. My glaucoma was missed for years by Specsavers because I have normal pressure. They only referred me when my eyesight deteriorated.

[Eahldt]

Same experience here. About 10 years ago I had delayed appointments, didn’t realise the consequences and ended up with surgery. After years of regular appointments with a consultant I now attend a clinic on an annual basis where routine tests are carried out. Last year I was told I would be contacted and wasn’t so just assumed my sight was stable. I always ask for pressure results so knew that was ok. When I queried the lack of response at this year’s appointment I was told my records show I was given an appointment with a consultant which was then cancelled with no given reason. This year I was given a contact number and told to use it if I hadn’t heard within 6 weeks. The 6 weeks is nearly up so I shall. A very helpful consultant once told me the only way is to be as proactive as possible. The onus shouldn’t be on the patient but sadly it is. The more visible (no pun intended) you make yourself the more likely you are to get results.

[Jtansey1]

unfortunately this has been the same for me. I even had two appointments at the hospital with my specialist and the didn’t do any fields before. He said I may aswell have not bothered going. I went two years with no proper fields test and I only found out how bad my fields were when I did my dvla one and failed. I repeatedly rang the hospital hazing up appointments and got nowhere. Iv proceeded to go private out of desperation as to the fact my vision has been neglected. I’m now having two trebeculectomies to save my sight as it has been left. My private consultant is my nhs one and he said he is seeing this happen too often. I’m personally going to per-sue a case of neglect because as a 36 year old with advanced glaucoma I should have been seen every 3-6 months. Not two years with no fields tests. Be persistent with chasing appointments and if you can just go private for consultations if you can’t get anywhere with the nhs

[Quantam]

Thanks for all your very useful but seriously worrying replies, I think following chasing this up with the hospital to find out the reason for the delay ,a letter to my MP will be forthcoming and maybe after reading all your experiences to try and get the media involved regarding the state of the NHS in this specific area. It appears people are losing eyesight as not getting checked up regularly enough it's a national scandal!

[Sodalover]

Unfortunately I think this is all too usual.

I was diagnosed earlier this year and have 50% sight loss in one eye. I was told I must have 3 monthly appointments, first appointment was fine. Received second appointment letter for Sept 9, next day letter cancelling this received. New appointment for 28 October received and again cancelled the next day, have just received another appointment for 8 November and in this mornings post another cancellation. I’m worried and scared about losing any more sight so I will be looking for a private consultant and pay for a check up. If anyone can recommend a private consultant in Warwickshire/West Midlands I’d be very grateful

[Littlesnowflake in reply to Sodalover]

Hello Sodalover. I can empathise completely. Being diagnosed with glaucoma is very distressing and you want to do your utmost to preserve your sight. I was diagnosed in 2015 when I was 62. I already had some peripheral vision loss together with high pressures.

Initially, I had appointments at my local hospital. They prescribed drops to control the pressures and I could get regular appointments. I phoned when I was due an appointment rather than waiting for one to be posted to me and it tended to be forthcoming.

Unfortunately, more recently my care has deteriorated. Whilst the clinicians have done their best, when they have referred me to a consultant I have been unhappy with the outcomes. My appointments have become much less frequent and the care inadequate. My next appointment wouldn't have been due until January 2025.

I was very unhappy and have seen Mr Bansal at the Meriden Hospital, Coventry. He has been extremely informative, helpful and friendly. I have paid privately for a laser procedure which my local hospital refused and it has bought my pressures down appreciably. I have now been transferred to his NHS list and had my 1st NHS appointment yesterday!

I hope this helps. Fingers crossed for you.

[Sodalover in reply to Littlesnowflake]

Thank you so much for your response, I actually live in Coventry and wil be making an appointment to see Mr Bansal asap!

[Littlesnowflake in reply to Sodalover]

Good luck for good outcomes. I felt so much better as soon as I was seeing Mr Bansal, reassured that any changes would be picked up and treated accordingly. Have you already been seen at UHCW?

[Sodalover in reply to Littlesnowflake]

Thank you, yes I’ve been seen at UHCW, I’m really not impressed so far, I’ve waited hours, been told the equipment they need is locked in a cupboard as it’s late so I’ll have to come back, told it’s imperative to have 3 monthly appointments then had 3 in a row cancelled. I’m not even convinced their diagnosis is correct, I’ve booked an appointment with Mr Bansal to get some reassurance and hopefully a treatment plan. Hope everything carries on going g well for you, your recommendation was much appreciated.

[Littlesnowflake in reply to Sodalover]

Thank you, and I do hope your appointment with Mr Bansal goes well. I understand your concerns, and I was most concerned with receiving the correct treatment and also timely appointments. I have been treated privately by Mr Bansal but now have been transferred to UHCW as an NHS patient. I saw Mr Bansal there last Monday and was very pleased with my care and proposed treatment. If I stayed with my previous hospital, I wouldn't have had an appointment until next January at the earliest! If ever I'm unhappy with my NHS treatment, or timescales, I'll see Mr Bansal privately.

Please let me know how you get on with Mr Bansal.

Regards Yvonne

[Jtansey1 in reply to Sodalover]

I see mr biswas at ahpo in burton on trent. He has done all mine and my mums glaucoma care and he is very good.

[PeterRabbit62]

Is this just in England, I live in Wales in a small town on the border of England, this means that in my local hospital we have very good eye clinic run by Hereford Eye Clinic all the consultants come from there, I have complained in the past about delay appointments and I have been told to go and see my opticians who is not Specsavers who does not charge for checking eye pressures or for having field test, recently though I have to say that the appointments at my hospital clinic has been good and I have been seen regularly which is good, I have two cataracts removed and a Gluacoma operation as well in Hereford because of pressure spike, my next appointment is in 4 months now I have been discharged from Hereford back to my local eye clinic. I kept on ranging my local eye clinic when appointments were delayed, glaucoma is a silent kill of sight and it is difficult to get people to understand that unless they have themselves. Best of luck hope you get an appointment soon.

[Anonoms]

This is useful reading. Particularly point 1.5.13 which details what treatment intervals should be nice.org.uk/guidance/ng81/c...

[Quantam]

Again thanks for all your very helpful comments, I have a Specsavers checkup this Friday and on the result of my pressure and OCT scan I will call the eye hospital and try to find out when they are finally going to see me!