How will NHS Eye Units manage to catch up ? - Macular Society

Macular Society

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How will NHS Eye Units manage to catch up ?

Sijslws profile image
Sijslws

Whilst the news headlines in the UK are about how Covid is causing increasing waitng lists for major surgery / treatment such as cancer there has also been an effect on the capapcity of NHS Eye Units and because eyesight is not seen as a life or death situation there tends to be limited coverage of the se]ituation.

Last year I had an Eyelea injection just before the first lock down and heard nothing in the way of my next appointment which I did nothing about initially as due to my wife having COPD we were shielding and therefore would have worried about venturing out anyway.

With the ending of the first lockdown I enquied via the PALS team as to the situation on Eye Unit appointments and mentioned that I had experienced some deterioration in my eyesight and I was offered an appointment and the Doctor who I have seen many times before arrranged an appointment for the Injection Clinic for an Eyelea injection in my left eye. When I got to the Injection Clinic the Doctor running it that day decided tht as I aleady have a cateract in my left eye it would be better to do an Ozurdex implant which was in October last year.

I then heard nothing about a follow up appointment which initially I was not surprised by as Iknow that the implant is meant to release over a 6 month period but as my eyesight had deteriorated again to the point where I have stopped driving I phoned up the Eye Unit Appointments office and was told that I was down for a 3 month review but had not yet reached the top of the list to get an appointment.

I know it is not as dramatic as a delay on getting something like cancer treatment but I do fear that the prospect of recovering sight to where it was diminishes the longer it waits,

Unlike some areas of treatment the problem is more about the processes to guard against the spread of Covid that is causing the reduced capacity rather than medical staff being utilised in the care of Covid patients but I am primarily wondering whether the impact on Eye Unit appointments is similar around the UK and how will they catch up.

For myself I am left wondering whether the implant did not prove successful for me or if the cateract has worsened or a balance between the two factors.

Alun

17 Replies

I personally have found no difference in my treatment, I know that laser was stopped due to the pandemic but I have carried on having my Eylea injections and reviews as before

Brode profile image
Brode in reply to Koalajane

So have I

Hrosie profile image
Hrosie in reply to Brode

Me too - have had my injections on schedule as usual throughout the pandemic. I appreciate and value how hard all doctors & nurses have worked over past year & thank them sincerely.

I’m sorry to hear you are having problems getting appointments at your eye clinic. I have carried in having treatment all the way through,. Perhaps you would like to speak to the Macula, Society. They may be able to give you advice on how to get an appointment.,

Best wishes.

There have been no delays here in Cornwall. Treliske hospital moved my appointments to St Austell where there are no queues and amazing service. I think I am very lucky. Your experience doesn't sound at all good as once sight is lost it doesn't some back.

tallyho profile image
tallyho in reply to Brode

That’s not always the case sometimes sight can be retrieved with treatment.

I would phone up your consultants secretary and talk to them about being seen . I am CEV but still went to my appointments every month as I knew the hospital would keep me as safe as possible and in fact it was amazing the lengths they went to to do so

tallyho profile image
tallyho in reply to tallyho

Also for the treatment of AMD which I do not have they switched people to Eylea which can be given every 8 weeks so this made sure all patients still got treatment but did nothing need to come in as often. Staff were def deployed elsewhere to help elsewhere in the hospitals.

This sounds a very sorry story. Altho' I had a cataract operation delayed 6 months by the pandemic; our eye clinics seemed to carry on more or less as normal, (with the magnificent improvement that we were no longer squashed together like sardines, waiting sometimes up to 4 hours for our appointments). Instead we were well spaced as were appointments times and we were seen almost immediately upon our arrival.

I am so sorry, Sijlsws, that you have experienced such a rigmarole. It is a constant theme that some eye patients have difficulty getting appointments in the correct time frame for their treatment, and are abandoned on waiting lists. A person's sight is paramount.

In my chequered experience getting timely treatment on NHS I found as mentioned above, both PALS and the Macular Society invaluable help. Keep posting on this forum. It is an enormously encouraging . Tell us how you get on. If your sight is deteriorating badly you MUST get onto your consultant too! Good luck xx

I'm so sorry to hear this, I've still had my 4 weekly inj as normal luckily, I agree you should ring consultant's sec and/or Macular society and explain your worries, wishing you good luck xxxx

So sorry to hear of your treatment or rather lack of. I had four weekly injections all the way through. Plus cataract operations in September and December for which I am extremely grateful. I would be inclined to follow advice offered by others. One thing I have learned through repeated health issues is to be proactive and then one tends to be treated promptly. Having said that it is usually unnecessary in my eye unit.

I’ve had similar experiences and have found d I’ve had to keep asking and stressing g the deterioration issues. Hope you get treated soon

Good afternoon Sijslws, As the Royal College of Ophthalmologists have deemed eye injections to be essential treatment, clinics have been running for treatments during the pandemic.

I would suggest if you have any worries, or a change in your vision then you should contact the clinic and make an appointment.

If you need to contact us for any advice or information, please contact us on 0300 3030 111 or you can email us at help@macularsociety.org

Best regards,

Kelly

Kelly Ephgrave

Advice and Information Service Administrator

Macular Society

Tel 0300 3030111

macularsociety.org

Sorry to hear of the poor treatment you have received, I live in Lincolnshire and have been well cared for. In fact I’ve had lots of help from my eye hospital including their Liaison Officer contacting me and arranging all sorts of gadgets to help with my every day living. I have wet AMD in both eyes, I think you need to change hospitals. You have a choice, I know that you may have to travel a bit further, but it is important to get regular visits.

Thank you all for your helpful replies and it is encouraging that the delay I am experiencing is not standard across the country.I will be trying to find a way to speak to someone to express my concerns. The problem is that the only Doctor that I have seen multiple times over recent years is an Associate Specialist rather than a Consultant so not sure if he will have a Secretary. He is also the only Doctor that sends reports to my GP surgery on the treatment I have received but even then I may only see him one appointment in 3 or 4. Have managed to find a list of the Consultants at the Eye Unit on the Trust website and have recognised one name who I think I have seen a couple of times over the past 5/6 years.

Thank you all for the encouragement that it would be appropriate to make further attempts to get to see someone.

Alun

I have a lot of sympathy for your situation as since being diagnosed with MD about 3 to 4 years ago I have had to push for appointments all the time. I also have waited longer than I should which is very stressful. At present my eye seems to have stabilized and I am not h having injections but going for checkups every 3 -4 months but I still have to ring the clinic to get appointments they don't just happen. also despite Covid I normally have to wait at least Three hours. I do hope you get sorted out soon and things improve for you.

Thank you for the encouragement to try and contact the Consultant's Secretary. Although that approach did not work in that I was put through to an extenion that just rang and rang by using a different option I managed to speak to someone in the appointments office to whom I explained the deterioration in my eyesight and she said she would speak to a member of the medical staffnfor me. I then received a telephone call from a Nurse at the Eye Clinic who went through my vision situation with me and indicated that she would arrange for me to have an appointment and within an hour the appointments office was in touch with me to sort an early date.Have now had that appointment which was with a Consultant who has identified a slight deterioration in my right eye that can be dealt with by injections and laser treatment but more deterioration in my left eye due to a continuation of some leakage and increased density of the cateract. Now definitely talking about a cateract operation once the leakage has been sorted for which they will try another Ozurdex implant.

So some treatment to get underway again and I have already got notification of 2 appointments for this.

Thanks to all of you that encouraged me to try and make contact with the Eye Unit indicating the deterioration I had experienced.

Alun

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