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?

I'm a little surprised she was discharged without follow-up from the hospital after her first treatment. It's more usual to continue monitoring and stay on the books so you can get back into clinic via an emergency number. But surprise doesn't help your daughter.

Keep trying the secretary or ask switchboard if they have a duty nurse on for eye emergencies/phone triage or even PALS. Somehow you have to circumnavigate the front desk wait for referral and get in for monitoring. I had an eye thing and I rang and rang and rang.

If it's something like another round of wet macular degeneration/cnv and requires injections, speed is of the absolute essence. When you finally do see someone they will validate that she couldn't wait. Good luck!

Do you have the consultants name from.the last time? I have bleeds on my macular and my nhs professor insists it isn't AMD. I got my gp to get me a urgent referal once. It should have 3 days, but the hospital cooked up and it was 7 days.

Yes you can go private all you need to do is find a local private hospital that has the type of consultant you need to see.

Their charge will be roughly £150-£250 to be seen.

You get the opticians to email the referral over once you have found a private hospital. Before you commit to anything at the private hospital they will tell you how soon you can get an appointment

@nodogz she did have follow up appointments for monitoring for 6 months and they were satisfied there was no further cause for concern so discharged her. She was about to start uni so it seemed like she was in the clear and the treatment had worked.

The optician mentioned atrophy so we are thinking might be geographic atrophy which I believe is final stage Dry AMD, that's in the already affected Wet AMD eye then they said about drusen in the other eye which was previously unaffected. So you can see why I'm so worried.
You are totally correct about trying to circumvent the normal system and I do feel that they will say it was an urgent case. Obviously I'm hoping against hope that what ever it is, is treatable.

Is there an emergency eye hospital nearby if her sight deteriorates whilst you're waiting? I understand the worry when they can be permanent changes. DD3 was seen within a couple of weeks as there were concerns about her vision and that was at the later end of the triage system in paediatrics so can you ask the optician/gp for guidance re local waits or what might trigger the need for eye A&E?

@Quitelikeit thank you for explaining that, that's very helpful. I will be on the phone tomorrow.

Just to add you need to press for emergency treatment and that's nhs. Check the big hospitals you can travel to for an eye A&E if she was treated at a small hospital.

By all means get a private consultation later on but you need to get seen fast. Eye treatments can also be expensive, my consultant has to apply for funding from the trust.

Push for a diagnosis this time and then get in the Facebook groups for the conditions. You'll quickly find out the best drs and treatments.

I have an eye condition and I have to keep on top of the hospital. It's not their fault, they are very busy and understaffed and I am not a usual patient so I don't fit the normal treatment or pattern.

@Hall84 i think our local hospital would be the emergency one, they have A&E and according to their website, an urgent referral from an optician or GP can be made to their 1 Week Rapid Access Clinic which is what it said on my DDs referral on her NHS app. But since then, they say no appointments available.

She needs to be seen in days not weeks. Normal A&E is useless, they don't do eyes! The hospital will want to do their own scans. Spend tomorrow on the phone or go in in person and perhaps they will do the diagnostics scans at the end of the clinic or if there's a no show?

Just another suggestion - could you speak to GP and ask them to call the eye hospital and speak to on call doctor?
apologies if that has already been suggested. There will always be on call for eyes.

Doctors strikes atm everything is in upheaval.

1. Go to GP and get them to expedite referral.

1. Call secs again and ask them to look out for expedite letter.

1. Call appointments, speak to the opthalmology team, and ask them to remember your daughter if and when cancellations happen.

So many clinics cancelled atm all the patients are displaced and filling new clinics.

There are many, many short notice patients on each waiting list. If the consultants deemed your daughter's referral urgent, they would have put it on an urgent waiting list, in which case it should be within a couple of months.

1. Find the money from somewhere and go private.

Good luck x

OP what area are you in? Eye referral pathways vary enormously depending on area. Maybe people on this thread have knowledge of your local hospitals and eye departments etc.
It is very hard (or impossible in some cases) for an optician to ‘put pressure on’ the hospital but I think at the very least I’d take her back to the opticians for another OCT to see if there has been any change in this short time, which might provide reassurance or allow for a new more urgent referral.

@Alocasia we are in Plymouth, so it's the Royal Eye Infirmary she was seen at for her treatment. You make an interesting point about going back to the opticians to have a repeat OCT scan. I shall call them in the morning on any case to see if they can offer any info.

@1ittlegreen thanks but I don't hold out much hope with her GP, even getting an appointment with them is near on impossible.

Is that regular A&E, the ophthalmology clinic or eye a&e? I.e. Moorfields have an A&E you can go to specifically with eye injuries/symptoms and there's others dotted about like St Paul's liverpool. It will depend on local arrangements if you need a referral to get in the door. If no one has looked at the OCT then at the moment the optician is doing the right thing with the urgent referral but with eyes I'd err on the side of caution as you are. I appreciate this isn't a trauma etc but with any loss of vision, especially given the history I'd want to see ophthalmogy sooner rather than later. The worst you might be told is that you need to wait for the appt or they might determine that it is for one of their emergency clinics.

Sorry, cross post!

I’m many miles from Plymouth unfortunately so can’t advise. But if you’re having no luck calling the hospital, a repeat OCT showing changes might be enough for the optician to call ophthalmology for a same-day appointment (if they exist in your area). I think given her age it probably shouldn’t be treated like a normal wet ARMD referral though the referral systems in some areas are completely nonsensical.

Thank you all for your replies and suggestions, tomorrow I'm going to call the consultant secretary and the optician to see if either of them can help.

I know I need to keep banging on doors until someone answers, this is just too important to wait.

Whilst I still feel very worried, you have all confirmed my fears that this is urgent and needs sorting quickly and that I'm not overreacting. Now to try and get the hospital to recognise that too.

You've had a lot of good advice here. There are other (serious) things that present as very similar to wet AMD (personal experience) and can respond successfully to the same timely treatment - in my case, a series of injections of Lucentis into the eye at monthly intervals. Also second the idea of seeing if there's an emergency eye clinic like Moorfields in London. I had to use them for a different eye problem and they were very helpful.

To answer your question, yes I was fast tracked back to the NHS on three occasions that all started with private sector care. I have a complicated health history which has led to several very rare medical diagnoses in recent years. The NHS have missed some of these at first consultation, and this motivated me to go private. I can tell you that the NHS missed my sarcoma when it was first removed as a lesion in 2019 (removed in an NHS hospital). When it regrew, it was dismissed as scar tissue or benign and not worthy of further investigation. When I insisted, the NHS hospital secretary rang me to apologise for the expected wait time being horrific. I asked my GP to refer me privately. That led to a consultation and day-case surgery for what was thought to be a benign lesion that had regrown. However, I knew the surgeon was worried when he saw it on the day of the operation. He ordered medical genetics reporting on it which showed a rare sarcoma. He immediately sent me to his NHS clinic and I had another operation within weeks of diagnosis in an NHS hospital. He is a plastic surgeon working in the NHS and doing private clinics once per week. He wanted oncology to collaborate in my care plan. I think the total cost of seeing him privately, having day surgery and one follow-up consultation was around £1200. Worth every penny really. I have had a similar situation in the past where I saw a consultant privately, and then got fast tracked for surgery into the local NHS hospital. I have just seen a surgeon privately for another suspicious lesion in my mouth. We both agree it has to come out given my genetics report. So I am paying him to operate in January. The total cost of the consultation and operation is around £700. Strongly recommend doing this if you have the funds.

If you go to your GP, they can change the status of the referral to urgent. It makes a difference.

Will the hospital talk to you about your 20 year old daughters appointments? Even if you do get through to then be told they won't discuss with you would be infuriating. We wouldn't talk to an adults parents unless they had a known learning disability or some such documented reason. You just saying she wants you to do it would cut no ice. You must have her with you to take over the conversation for when you do hopefully get through. I'm sure you have considered this, but just alerting you in case you were not aware.

I've sent you a PM with a number freely available on a Google if you don't have it already. Good luck!

@scoobydoo1971 I'm sorry you have had to deal with so much to even be taken seriously, it sounds like you had an uphill struggle, your determination to get a proper diagnosis is inspiring. Thank you for sharing.

@Neverpostagain I did think they might not speak to me but so far they have, DD is on hand if they refuse so we'd put speakphone on if necessary. She is pretty switched on so that should be OK.

@SisyphusDad thank you, yes time is of the essence I feel for my DD, having been through this before where she was left waiting for that 1st appointment.

No advice OP but just wanted to say well done to you, I have had to do similar banging on doors for my DD at the same age and with no knowledge of how the NHS or private system works. It's emotional (totally understand that feeling that you want to swap places) and exhausting but she is really lucky to have you advocating for her as the whole system is a mess (not a criticism of the wonderful people working in the system!). I also really regret not getting her first appointment privately, as during the time we waited for the NHS appointment, which was only a few weeks, she deteriorated significantly (not an eye condition). Hope you make some progress today.