Post code lottery? : I am beginning to... - Macular Society

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Post code lottery?

Catseyes235 profile image
15 Replies

I am beginning to realise that treatment varies so much throughout the country and no doubt the world. I am so lucky to be treated at Kingston Royal Eye Unit. I was a bit dubious as they did nothing for my thyroid eye disease 20 years ago until a specialist picked up on it and sent me to Moorefields. However for AMD they are amazing and unless you are in early stages of 4 week injections so don't always need a scan, you will get a scan which will be checked that day by a doctor who recommends the injection and when follow up should be. My brother in Scotland however seems to go for a scan then is often sent home (a 40 + mile round trip drive and otherwise 3 buses if he or his son did not drive) then has to to await the opinion of a doctor, await a letter with an appointment and has to return for the injection!! I think the streamlined one stop shop system far better and probably shaves off some NHS expense and time and admin costs.

Perhaps those not so lucky could join a patient group for whichever hospital (they are doubtless not alone) and point out how things could be improved for the benefit of all concerned. We Brits are good at grumbling individually but it doesn't necessarily get results unless directed at the right people.

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Catseyes235 profile image
Catseyes235
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15 Replies
Bobbie915 profile image
Bobbie915

Hi Catseyes, I have also wondered about this. My hospital also has a very good system. Eye test, scan, see doctor. If injection needed go next door to that department. After injection go to reception and fix your next appointment. Confirmation of appointment comes in the post a couple of days later. If no injection, same routine at reception for next appointment.

All very simple and works well. We have a 3 hour round trip by car and park & ride. For those who have to go back on a different day to have injection, the travel cost - both time and finance, doubles.

I have no idea how things work with the NHS. Would the odd patient, pointing out to a doctor that other clinics have a better routine, really be listened to?

Catseyes235 profile image
Catseyes235 in reply to Bobbie915

Always better to try I feel. Patient feedback is very much encouraged in the NHS. And sometimes the actual practitioners are too busy to think things through!

Emelinep profile image
Emelinep

I go to the same unit as you Catseyes & apart from a couple of hiccups find them really good. The only stressful part is not being able to make next appointment on the day. Although this time I was able to speak with the AMD Coordinator, who is a really nice woman and get the date I needed.

Catseyes235 profile image
Catseyes235 in reply to Emelinep

The only times they haven't been able to give me an appointment there and then has been if it was further in advance but as you say coordinator always good. I did have a wee glitch last time when signed in on machine and was somehow not picked up but I'll forgive them that once!

pinkperfection profile image
pinkperfection

You are very lucky as the eye clinic here in Cambridge is not well organized. You are never given an appointment on the day of the injection and it is very stressful ringing in to get appointments setup as there is only one person who does it and she is often not there which means you have to leave messages and hope something gets sorted. They only do a scan after you have three injection and you rarely get to see same person doctor twice. Perhaps I should try contacting the PALS group and tell them how other hospitals arrange things.

Catseyes235 profile image
Catseyes235 in reply to pinkperfection

Sounds like a plan. You have nothing to lose and much to gain. I swear the NHS wastes money through poor organisation and duplication of actions such as even looking up records. It would be great to see a comparison for the same service. Maybe Admin here could do one of their little surveys. I often get a text from the hospital or doctors asking for feedback which must be key if taken seriously. Good luck . . Power to the Patient!

pinkperfection profile image
pinkperfection in reply to Catseyes235

Thanks catseyes my next appointments are end of next week. Think they will assess me but not hopeful news will be good because I had a 11 week gap in treatment because of infection, although did get an injection 4 weeks ago. Anyway will see how it goes and may pursue appointments setup.

Bobbie915 profile image
Bobbie915 in reply to pinkperfection

The - person/doctor you rarely see twice, is that the person doing the injection or the doctor reviewing your scan? At the Bath hospital, the doctor reviewing the scan is rarely the same person and when I first started attending this clinic, the same applied to the person giving the injections. Apart from being good with appointments, they have improved 100% on injections. For my first year or so, it was a different junior doctor nearly every time. Most injections were not too bad but after effects dreadful. Now they have an excellent nurse who does most of the injections and if she is not there, the doctor who taught her will be on duty. Continuity really works. Now I don't dread them saying - you need injection today!! I am not saying the clinic is perfect, I have had other issues but not with appointments.

I have never been asked for feedback - unlike every little item bought online!!!

pinkperfection profile image
pinkperfection in reply to Bobbie915

Hi Bobbie

Never know who I will see both for injection and review. There is one nurse who is very good at the injections but have also had one of the doctors do it who is not so good. Have also seen same doctor to review a couple of times seems better at that but she is leaving now. Had another nurse who was quite good and another doctor who refused to inject because I had eye infection maybe sensible but I have blepharitis which has a habit of flaring up just at the wrong time. Couldn't help thinking the doctor was less experienced so in some ways was relieved. However some continuity would be good as I feel I have to repeatedly tell them my story again and again.

There are several factors at play here. This is a well known problem and has been looked at through research and audit. The numbers of patients/conditions treated has increased hugely in the last 8 years. Many of whom are still being treated from the beginning 10 years ago, if you add 20 new per day to those who are already being treated....you see where I'm going here.. So the resources and infrastructure in some areas was unable to keep up. We have been trying to get a second injection room (the one we have made into 2, as there is no more physical space) for 5 years! Trust me we know the issues, and resolving them is not as straightforward as it may seem.

Catseyes235 profile image
Catseyes235 in reply to

But you are trying to address the issues which is great. I must ask the nurse giving injections how many are doing so on the day. I've known of no more than 2.

Also must ask how many are treated . , it seems their approach to patients us 'we will fit you in , no matter what,'

Ayralin profile image
Ayralin

I'm in the USA. My usual eye clinic is the same one treating me for my wet AMD. That clinic is specifically for eyes. They also do outpatient surgeries such as cataract, Lasix...etc.

On Wednesdays my clinic location is like an assembly line AMD injection fair. One can expect to spend about 2 hours, moving through sign in, then, 1] eye/vision exam and eye pressure test with dilating drops, 2] Optical coherence tomography (OCT) scan, 3] Lucentis injection with numbing gel, IF needed. Then check out, whilst making the next appointment. I see the same retina specialist each time, he does all the injections. I even see many of the same assistants and receptionists. I have learned how to get in & out in about 35 minutes!! I make my appointment for 12:10pm. I either end up the last of the morning appointments so the staff is eager for their lunch OR I am the first of the afternoon appointments - no one poking along before me, slowing the tempo.

Today I was in & out in in 30 minutes - as NO fluid is behind my retina - no injection required! I still have a rippled or damaged retina with vision issues - that may or may not resolve.

This "assembly line" description may sound impersonal, but with the growing numbers of us getting the wet AMD and requiring treatment - it has been incredibly efficient way of managing all the patients.

This scenario is repeated at 2 different branches of this eye clinic. So there are 3 days per week dedicated just to AMD and the injections! I'm thinking the numbers will be growing with all us baby-boomers.

Best wishes to everyone that they also have some good results in their upcoming appointments.

Catseyes235 profile image
Catseyes235 in reply to Ayralin

That sounds very similar to my UK experience. Makes so much sense. All the staff at my clininc are nice and helpful so not too impersonal.

Lizjim profile image
Lizjim

I agree it seems standard of treatment differs from place to place. I am very fortunate to attend eye clinic in Livingston Scotland . I can not speak too highly of staff. I never seem to get same doctors / nurses each time I have an injection but without fail they are all excellent .I have had very little pain and few after affects .I can always make an appoint at each visit usually with a choice of time . I have never been worried or nervous before treatment , so thank you all staff at St. Johns eye clinic Livingston .

Catseyes235 profile image
Catseyes235 in reply to Lizjim

Sounds good. My brother goes to a clinic near Falkirk. He was pleased to have a short visit of scan then injection. However the scan is looked at by a doctor online to make a judgement for his next injection. Oh well I just hope they streamline the process more in future.

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