Can anyone help? How do I get an urgent hospital referral seen?

[scoobs321]

I am so worried, my daughter was diagnosed and treated for aged related wet macular degeneration at the age of 17. She is now 20 and we got her a routine eye test at the opticians last week inc an OCT scan. They picked up some concerns and did an urgent referral to our local eye hospital.

We can see its been sent to the hospital but when i phoned today they said there's no appointments and she's on the waiting list. They couldn't tell me how long it would be until she gets an appointment.

I am going out of my mind with worry - will whoever deals with the appointments take in to account she already has a serious eye condition? Waiting could cause even more problems with her eyesight.

I've been ringing around today trying to find someone who will give me some answers but I'm drawing a blank.

It doesn't look like she will be seen with the 2 week urgent referral window. Last time when the wet macular was detected at opticians we had to wait 7 months for an appointment in which time her eye sight was permanently damaged. I can't afford for that to happen again.

If anyone knows how these hospital systems work please please could you tell me what or how I get some answers?

Do you still have the contact number for the macular team?

who did you speak to? You need to speak to the medical secretaries in the department the letter has been sent to.

A 17 year old can’t have age related macular degeneration. It relates to ageing changes in a certain layer of the retina.

there are other causes for macula degeneration in younger people - did the consultant last time mention a genetic condition or another cause?
have you tried contacting the consultant you saw last time?

usually when we refer, it’s triaged, if the OCT images are available, it may be that the referral isn’t now considered urgent. You can also try contacting the optician to ask them to chase. It may just be that they’re busy.

have they also given you an amsler grid to monitor any visual changes. These can be useful and if you do suddenly get a change you should contact someone asap.

@DustyLee123 I've tried emailing the consultant's secretary that she saw last time but got no reply. I've phoned the eye hospital directly and they gave me the number for the WMD co-ordinator so I've left a message for them.

I know it's an awkward time of year as people go on leave, but last time when she eventually got her appointment and they reviewed her notes they were saying 7 months is a long time to wait intimating that has she been seen sooner the treatment would've resulted in no lasting damage (feb to oct 2021).

I can't have a repeat of that, she's a young woman with an old persons eye disease surely that would give her some priority to be seen quickly?

https://www.macular.org/care-and-treatment/monitoring-your-macular-degeneration/amsler-chart

@Riverlee thank you for your reply, its appreciated. The consultant didn't mention genetics at all, just said it's unusual but he didn't go in to any detail or suggest any cause apart from saying her short sighteness could be a contributing factor but she's not massively short sighted although it did get worse quite quickly in her mid to late teen years. We do have an amsler grid and she's using it, thank you.

I will go back to the optician and find out if they supplied the OCT scan with they referral and if there is anything they can do to help progress it.

I've been a medical secretary for 30 odd years, so I've got a bit of experience. You need to ring the Consultant's secretary and ask her if she can put you on a cancellation list. Mine wasn't an official list, but with a case like this I'd always ask if you could get the patient to an appointment at short notice... like one hour's time. Patients often cancel at REALLY short notice. Leave your phone number and make sure your phone can accept all incoming calls. I often ring people with a short notice cancellation, only to find their phone won't take number with held calls (switchboard hide our number for privacy reasons).

@underneaththeash sorry I tagged the wrong person in my last reply.

@thenightsky thank you so much that's a very helpful insight, I was hesitant to contact the secretary as they hadn't replied to my email last week and the website which lists them says 'not for appointments' do you think in these circumstances it would be ok?

When I rang the appointment service today I did ask to be put on a cancellation list which he said he had done, so I guess that might help.

Ah, the 'not for appointments' may be an issue. It sounds like they've contracted out their clinic booking to an outside agency. I have control of my Consultant's outpatient clinics and run them myself. Worth a call though, just to cover all your options.

A lot of departments have downgraded their med secs and this is the result. No personal service.

My dp was referred by his optician in October and the appointment came through for late November, when we were away! He's seeing the clinic in early January. They should not keep you waiting too long - ours at least has a different pathway for under 65's for eye conditions typical of older people as they can have different underlying causes

Is it worth going back to the optician and asking them to refer you to the emergency eye clinic or similar service area dependant? Given their concerns and the pre existing sight problems they may be able to refer you on a different pathway if you tell them that the hospital cannot give you a timescale for the appointment. If they feel her sight will be compromised by the wait for an appointment this should be a justification to refer you on this basis. I don't work in this field but similar happened to my mum and she was referred in this way after going back to the optician to push further. All the best to you and your DD.

@scoobs321, it's still worth trying to get hold of DD's consultant's secretary. They can be incredibly helpful, especially if you explain your concerns to them.
DC1 (now an adult) was diagnosed with a very rare autoimmune condition (thankfully in remission now) as a teen. They were lucky enough to have a very dedicated senior consultant ophthalmologist as their eyes (not their sight, their actual eyes) were under threat a a result of their condition. The consultant was great and saw DC1 as an emergency at 8pm one evening.
I hope you have similar luck.

Just to add, @scoobs321, even if she's been discharged, still contact the secretary.

@thenightsky I'm going to ring the secretary anyway as you suggest, they may have some useful insight even if they don't control the appointments. Thank you.
@gotomomo thank you I am hoping once I get to the correct person I can get this appointment moving along. Hope your DP is OK.
@Nursemumma92 that's really helpful thank you, I'll go back to the opticians to find out what the original referral said and if they can apply some pressure. The original referral I know was marked as 1 week urgent. Thanks for your kind wishes, you don't know how much I appreciate them.

@vipersnest1 thank you I will do that, I'm glad to hear your DC is in remission. Losing sight is so scary and debilitating, I can't bear to imagine if it happens to my DD. If I could swap eyes with her right now I would.

Maybe this is time to get ££ together to pay private consultation. What price her eyesight?
Does the same consultant do private clinic? Or ask eye hosp for the private clinic

The med secs at my mum's NHS eye clinic where my mum has been going for 15 years are really helpful.

I would call back for advice, mention your daughter's age - her eyes need to last her several decades compared to my 91 year old mum's! - and ask about cancellations. Or even being squeezed in as an extra patient. My dad also had AMD checks for a while and each parent would sometimes have appointments in the same week but different days. The clinic would always do both of them on the day of the first appointment so they had to go to the hospital once.

Good luck and don't ever think you are pushy for trying to protect your daughter's sight.

@cestlavielife her previous consultant does and i did ring the private medical company but they said they don't do WMD treatments there only like cataract surgery etc. I might have to try further afield but would I need a referral for that does anyone know? Oh and they aldi said the consultant in question is away till Feb so I suspect that counts them out.

I totally understand. My second DC is registered blind due to their severe (and genetic) impairment. They too are now an adult, and do remarkably well.
The feeling of wanting to take their issues away is very familiar to me, as that's exactly how I feel.

Last time when the wet macular was detected at opticians we had to wait 7 months for an appointment in which time her eye sight was permanently damaged. I can't afford for that to happen again.

I think getting some private appts is going to be your way forward. Do what you need to do.

Dd has chronic condition and at times have paid private appt rather than wait nhs but she easily switches back to nhs . Can be same consultant.
As you say you cannot afford and nor can she to take risks with her eyesight.

If you can afford it, ask your GP to refer your daughter to be seen privately. You can google private care opthamology services that are local to you. I have sarcoma and it was only picked up this year because I went private. I selected this route having had a pitch battle with several GP's who didn't want my tumour looked at (calling it scar tissue or a benign cosmetic issue), and then an NHS waiting list from hell that would have been a 12 month wait at least. Upon going private, I have been seen as a private outpatient in 2-3 weeks on each occasion. The consultants have each referred me back to their NHS clinic, or a colleagues, for rapid care where needed. This has not just been for sarcoma but for other conditions over the past 2 years as well.

@Choux exactly, she is so young and eye sight is so precious.

Thank you all, you've given me the determination I needed, I was feeling so deflated and unsure of where to turn next. Tomorrow I'll ring the opticians and the med secretary. Hopefully they won't have started their Christmas holidays yet.

It's my DDs 20th birthday tomorrow, so we must put on our happy faces and celebrate the wonderful person she is.

@scoobydoo1971 thank you that is most worrying to hear, I am fully prepared to go private if needed - I was wondering how it works if we were to be seen privately as i don't know that we could afford the treatment if it wasn't nhs. So in your case seeing the consultant privately got you ahead of the nhs wait list?