"Virtual" assessments for AMD

Does anyone have any experience with or comments on the introduction of virtual assessments into the treatment protocol for macular conditions? I am a long-term (5 years+ and 60+ injections) patient at PAEP in Edinburgh with wet mac and have seen assessments change from 30 minute consultant-led appointments to 5 minutes with technical staff, with a a written follow-up. Initially an assessment involved slit-lamp examination, eye-chart test, pressure check, OCT scan and - key - sufficient time to discuss your condition and the results of the scan with the consultant. Now this seems to have been reduced to a basic eye chart test and an OCT scan without any comment bar a "we'll write to you if there are any problems" comment. While I recognise the need to streamline the process as far as possible I do worry about the lack of consultant contact and the time-delay before anyone looks at and informs you of the scan results . For those of us of working age in particular with wet mac, any delay in picking up a change is worrying as our livelihood is often dependent on maintaining what decent sight we have left. Grateful for other views - is this widespread now?

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  • interesting you ask about this. I was diagnosed with branch vein retinal occlusion in 2015 and initially it caused no problem ( tiny amount of bleeding and no oedema) BUT it had been missed at a local eye clinic ( I had asked for appt as knew something was wrong). By chance, I had routine optician's appt 2 weeks later and the excellent person in Boots picked it up- so it must have been difficult to diagnose initially.

    I then was monitored by Moorfields every 6 months. I was due to be seen this January and received a letter cancelling my appt and giving me, instead, an appt at a virtual clinic for several months later.

    I wrote to the consultant, explaining that this had been a missed diagnosis originally

    and therefore I wanted to stay in a clinic where a doctor would see my routine scans. I said if this was not possible I would like to know who to write to about what I saw as a withdrawal of care.

    A doctor rang me soon after this and when I explained about the original difficult diagnosis she arranged to re-instate me. She asked if I wanted to see a consultant and I said that I wasn't a new patient and didn't expect to always see a consultant but did want a doctor to review me, So a couple of weeks later I attended the original clinic and did see a consultant who said I had some new bleeding. Two weeks later I had severe vision loss and two weeks later was started on Intravitreal injections of Eyelea.

    The consultant said it was a good thing I had insisted on staying in the proper clinic- I think the doctors don't want to pass us on in this way but someone is organising what is a lower cost system - it may be that this is all that can be afforded by the NHS but I think people would be willing to pay more tax for the NHS if they realised what may happen in future??

  • I think you are right, Rosy. I have noticed the cost-cutting at our clinic. It is worrying.

  • Spot on rosyg!

    I also think whoever does the cost cutting exercises does not understand or use an appropriate risk management model. Simply put, the potential seriousness to us with sight problems is greater than that facing someone with a fungal toenail infection and cost cuts should be made where they will cause the least potential damage! It beggars belief that anyone could be condemned to any level of sight loss compared to some comparatively trivial problem (esp where tx is available over the counter). At my hospital there are also layers of management ripe for culling.....would pay for quite a bit of actual care. Sorry, rant over.

    Don't know about other eye probs but with brvo I was told stress makes it worse and yet we are often put in the stressful situation of having to flag up issues and fight our own corner.

    Good job we're up to it lol.

    .

  • then we need to get active with our concerns. If the powers that be aren't aware of the situation nothing can be done to improve it

  • Hi apiaster

    RosyG got it in one! I don't blame the doctors either; they can only work with the resources available to them and the instructions they are given. I just hope that by short-changing the patients there will not be a massive blunder one day. I feel sorry for the patient who will be at the end of it. I would suggest you make a formal complaint. It may or may not work. At least you have tried. Good luck.

  • Hi there . I have been treated for bilateral DMO for 6 years now and recieved injections every month. Now on my third drug Eylea. I live in the south of England and the experience you have had of virtual assessment is not what I have at all. I still have a VA, then OCT, then I see the dr ( not always my consultant but one of the team) we have a discussion then I have the injection done. It takes about 2.5 hrs but I don't mind that really. I am given the time to look at my OCT and discuss how things are going. My hospital is not the well known one but it has an excellent reputation and my clinic/ consultant won the Macular Society Award for best practise in the last few years.

  • Although I don't have AMD the patients in the Veg-f clinic are treated the same as me I know you his because we follow each other around from one part of the appointment to another.

  • Hi

    I have been treated for 5 years and have had 35 injections. The interval between injections has frequently exceeded the guidelines. From time to time this has been due to having a virtual appointment, and the delay between assessment and treatment appt, I found quite stressful. You can never be sure, you haven't 'fallen through he cracks'.

    The last year have been slightly better as extra treatment clinics have been timetabled on a Saturday due to demand. These resemble Virtual clinics as these is no eye slit examination or pressure test and little opportunity to ask questions. On the plus side I am usually in and out in an hour, and parking at the hospital is better. ( l am yet to get away with less then 2 hours on a normal clinic day, and some of these, do not treat on the day, so you are still waiting for an appt thought he post. )

    I alway ask, if I will need another injection when scanned, and contact the clinic if there is an unreasonable delay in receiving the treatment appt.

    I do agree that not having a full examination is a concern, and have in the past turned up at Eye Casualty if I feel any changes in my vision.

    I am retired aged 65, and able to fight my corner, but worry the less well informed who do not have any support may not be getting the service they deserve.

    All the best. Do post, and let us know how you get on .

    .

  • Dear Apiaster,

    I gather that an increasing number of AMD centres are beginning to adopt Virtual Clinics in order to address issues with capacity.

    The idea is to reduce the amount of time spent by each patient in clinic and allow larger numbers of patients to be seen.

    I have been informed by an ophthalmologist that the actual details of Virtual Clinics and how they’re run varies from centre to centre, as different options have been adopted.

    They stated that generally, it’s the patients with "stable vision after treatment" who are transferred to the Virtual Clinics.

    They acknowledged that some patients do not like the non-contact with clinicians aspect. They felt that it was reasonable for the patient to express that view locally to the team, expressing why they don’t like it in writing in case changes may be effected.

    Just to make you aware, we are currently offering free 6 month membership. This is a good way to keep up with current developments. Please ring us if you would like to benefit from this, or join via the following link:

    macularsociety.org/6months

    Please do not hesitate to contact us if we can be of any further help. The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

    Kind regards,

  • Thankyou all very much for your comments. So much does seem to vary between centres but I can see its an approach that is gaining ground. I wonder if there is any attempt to "triage" clients though? By stability of condition, type of condition, age or other factor? "Stable after treatment" is a difficult label for me to accept as I have had continuous injection treatment over 5 years and slow but definite improvement of my "good " eye. But there can be no way of telling that the effects I am getting are not wholly dependent on keeping up the injection treatment...unless someone can tell me otherwise? That's why I feel like I am being used as the proverbial guinea-pig - i.e. once the virtual system shows I have lost some sight - only then do I get treatment again - but that degree of sight loss - to me - might be catastrophic as I am dependent on the "good" eye to continue working and therefore supporting my dependants. If only I could get across how valuable my continuing to earn is to HM Govt!

    I am about to put in a letter today in fact to PAEPEdinburgh on what I think of the system. Agree with Bench57 in that I feel most worried for those who are not able to be as pushy as me! In my own case in 2011 there was a three -week gap between initial optician diagnosis of "something odd" and my first trip to eye casualty after my R eye failed completely. I found eventually that my GP referral letter to the PAEP had been "lost" - hence the delay and I often wonder how much sight I could have saved if I had gone to casualty straight away. As a result I know what a one or two week delay in getting treatment for Wet Mac can do. Thanks also to Rosalyn at helpline - I am a member and involved the Edinburgh working-age mac group at the moment! Looking for new members if there is anyone out there is SE Scotland too....

  • The virtual clinics can work well, some people love them and others hate them. They are a bit of a 'marmite' phenomenon. Generally when the vision is done if it is reduced or the patient has noticed a change they are refracted and if needed escalated to be seen by a clinician. The difficulty with wet AMD is it can change quite predictably and unpredictably - those who have been stable tend to be placed into virtual clinic if they are agreeable and can be switched back if needed.

    The scans are generally reviewed within 48 hours by the consultant.

    There is a huge problem with capacity across the country - the more conditions can be treated the more are seen and treated and generally these conditions are life long. We are physically running out of space in many hospitals.

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