Should we be making a fuss

[Anonoms]

As usual appt is late. Now husband has annual private fields tests. Coincidentally got an NHS assessment appt letter arrived while at opticians for date which will be 8 weeks late. This fields test has double the solid black dots as the previous one . vfi has gone from 20 to 50 plus. Optician requested appt is brought forward. Results sent to hospital but no response yet. Should we make a fuss or just wait another 4 weeks...and then however long it takes get called to a consultant appt. Husband is on maximal tolerable medication. Has had a stent multiple needlings and surgical revision. Optician was not paid to more than pressure and fields so no OCT done. Initial target at first surgery was 12 but it's never got that low apart from the day it was done . Now it's 18.

[Jennymary]

If I'm reading this correctly, your husband's appt is now 4 weeks away, by the time the hospital have found earlier appt it might still be 3 weeks away, my advice would be if he's very concerned a trip to A & E might be advisable, I wish you both well

[Anonoms]

At least 4 weeks away to an appt where technicians just take measurements. Maybe six or seven weeks for a doctor to review and then call him in . The existing field loss to date is to some extent due to negligence by hospital admin. The field loss he has acquired during this year is more than the previous 9 years.

[nat10 in reply to Anonoms]

What tests do the technicians do? I would hope if they are concerned or your husband relays his concerns they would talk to a consultant even if your husband doesn’t see the consultant himself. Does your hospital eye hospital have a emergency clinic?

[Anonoms]

Whenever they get overloaded which is always , unless you are a post op, they put people through an assessment clinic. You get fields tests, pressure tests, and an OCT scan and then sent home. They are trained to spot when immediate interventions might be required. So I am sure a pressure of 50 would make something happen but he seems to get damage about 16. Typically I think these assessment clinics add three weeks to the time scale to get to a consultant. It cheeses me off because he always does get called back. The optician clearly doesn't think he needs to be seen immediately as she would have sent him to A and E but she does believe he needs to be seen soon and has written to consultant requesting that. We contacted clinic on Wednesday and no response other than a phone call to ask for more details of the optician.. I guess I need to know if an exponential change in vfi means I should be encouraging him to follow up with the secretary and try and get onto a consultants clinic now. The visual field test looks like all the top half of one eye is black or grey. There are twice the number of black dots that were there on the previous fields test a year ago and some developing in the other half of the eye.

[Longwalks3 in reply to Anonoms]

I would certainly chase this up. Your husband’s eyesight is precious. I have been guilty in the past of being too passive about my glaucoma care and as a consequence I have a lot of damage to my visual fields. In fact I lost my driving licence last December because I no longer meet the DVLA standard. I would continue to press for an urgent appointment with your consultant and if you have no joy I would go to A and E. Good luck!

[Trish_GlaucomaUK Partner]

Hi.

When they are problems with delays or cancellations of appointments it is always best to call the eye secretary or better still, if you know the name of the consultant ask to speak to their secretary. It is important that they are made aware of the problems your husband is having with being seen, but more importantly that VFT results are showing more damage. The secretary will be able to see your notes, speak to the consultant and get back to you. If the consultant feels he needs to be seen sooner rather than later they will arrange this. Calling the appointments department tends to be a wasted call as they will just advise you will be contacted when an appointment is available.

[CC08]

Hi, I’m sorry to hear this. I can sympathise as in Worcestershire we have NHS Glaucoma virtual clinics, when you finally get an appointment you have a pressure test, field vision test and OCT and are sent away. A consultant looks at all the results in the following four weeks and you are only written to if they decide to give you treatment, the appointment is sent by letter. There are no consultants to see or speak to to discuss concerns, worries or symptoms. The clinic is run by an external company who the NHS outsource it to.. I have to go privately now as it took two years to get an NHS appointment and in that time I had a SLT and a stent privately. My experience is you have to take control of your care and call the NHS dept and ask someone to look at your referral notes and keep pushing, make a nuisance of yourself if necessary. Good Luck x

[Anonoms]

The real bit of the question I suppose is what is the vfi figure on a field test. Does moving from 20 something to 50 something mean something should be done sooner rather than later. He says he can see fine so doesn't need to make a fuss. His optician has sent in the previous and the most recent field test to the consultant saying his appt needs to be brought forward but administratively the hospital is useless-PALS has already determined they were previously negligent. Cannot afford to private as he has already been told next move is more surgery.

[Sunshine88888888]

Hi just reading about your concerns, it certainly takes a lot of persistence to get an earlier appointment and at times I’ve been really upset and exhausted which doesn’t help the Glaucoma. I’ve discovered my hospital does have an emergency nurse I can phone, or an emergency doctor I can phone from 6pm to talk to. Often I can phone the eye clinic all day long and not get a reply. Now when I have a problem getting through I contact PALs. I stress that I’m not making a complaint that I need help in being able to speak to the right person. They have been absolutely brilliant in helping me! I have now contacted them twice in order to pose questions to the consultant or secretaries, both times they have come back within the day and even checked that all is ok. I was really nervous of going this route however would have no hesitation now. Hope you get an earlier appointment

[Anonoms]

He rang the hospital and his results are being discussed at a team meeting next week. That's fair enough I suppose. I would have gone down the nurse route if it had been me. I just need to know whether I am righti in getting concerned so that I can encourage him to take some action rather than just sitting back. 18 months ago one doc insisted that he needed surgery to avoid losing vision in that eye, the consultant overruled him. If only he had known what was coming.