NHS and 2nd potential anti vegf

[Deepbluesea2022]

Hello all even though I work for the NHS I still despair at the appointment system sometimes! I paid to go privately for my first anti vegf injection and the consultant said he would slot me into his nhs clinic for the second but due to probably the jubilee BH my second one will be 5 weeks 2 days after the first - if I need it. He plans to scan me first as it’s more as needed (prn) than a regime for myopic degeneration I think… My question is for those who have had two or more injections does a week or so matter or does it need to be 4 weeks. I ve read numerous this from 4 weeks being what the meds are licensed for to 4-6 weeks etc. Many thanks!

[tallyho]

This must be a real worry for you, next month I have my 95 th injection for DMO if you are having Eylea which I would think you are then you can wait up to 8 weeks without any real worry as this anti vegf can have a longer space between injection. Hope all goes well for you

[Deepbluesea2022 in reply to tallyho]

Thanks so much for responding. Yes I did ask if it was eylea and he said yes but this was just prior to him injecting me so I m not sure he was taking it in! I can double check though. Thank you!

[ChesterfieldChap]

The NHS is completely broken now unfortunately. I had my first appointment at the eye centre chesterfield after a year of waiting when I should be seen every couple of months. They're working flat out 6 days a week now trying to catch up with everything so I know where youre coming from. Paying private is a kick in the teeth especially as a tax payer. My better half is a practice nurse and we had to pay private for her to see a neurologist that usually works for the NHS. I hope you get what you need ASAP and when you need it and good luck with your health.

[Deepbluesea2022 in reply to ChesterfieldChap]

Sorry about your NHS experiences too. Yes I know as an NHS worker since 95 it’s frustrating and the deterioration of the NHS has been huge in the last 10 years. Thanks for sharing your experiences. I hope you are both well.

[springcross]

Hi Marathongirl. I wouldn't worry about five weeks two days as a lot of people have had to wait longer than that, including myself in the past on more than a few occasions (I have wet AMD) - I think it depends on the area you live. You may not even need an injection if your scans are satisfactory as your consultant has said. You could contact the Macular Society Helpline for more info if you are really concerned. Good luck and I know it's easy to say, but try not to worry too much.

0300 3030 111 or email [e-mail]

[Deepbluesea2022 in reply to springcross]

Thanks very much springcross. I just want to make sure I m doing as much as I can and if it means it impacts outcome then I ll try and pay privately. Thanks for sharing

[springcross in reply to Deepbluesea2022]

Yes, I understand and don't blame you as a lot of the time some of us have to be our own advocates it seems. I had to do the same last year as my five weeks turned to eight weeks due to Covid and up until then, things were fine. I hope all will be OK. x

[Deepbluesea2022 in reply to springcross]

Yes it’s a shame it’s it we have to fight to get effective treatment. I do worry that quieter people will miss out! Glad you are doing ok thanks for your responses. X

[Hrosie]

Hello .. I have AMD & followed a similar path to you for my first consultation, 5 years ago. I panicked when I first suspected I had AMD & optician wanted to refer me to local NHS hospital (Chesterfield). I phone Macular Society helpline & they gave me name of a consultant in Derby nearest to my home . I got an appointment immediately and had my first Avastin injectional within 3 days followed by 2 more. I was private for 3 months then the consultant transferred me to his NHS clinic as he said it was a long-term treatment and very costly. 5 years later I am still attending his clinic where I have been cared for very well. I am now attending a 'stable' clinic every 3 months and haven't needed an injection for almost a year. although if my wet AMD comes back I it will be injections again. My NHS injections have been Lucentis and time between injections has varied from 4 to 8 weeks. Good luck with your treatment.

[Deepbluesea2022 in reply to Hrosie]

Thanks for sharing. Glad things are stable for you atm.

[Hrosie in reply to Deepbluesea2022]

Glad to help. Referring to response from 3furryfriends, I forgot to mention that during my treatment I was seen by numerous doctors, all with different opinions. I too wasn't happy about that so phoned the eye clinic helpline and was told to write down my concerns in a letter to the senior consultant (not the one I saw originally) and ask to discuss them. I did that and subsequently met with the Sen Con who was very helpful & concerned about my experience - from then on things improved. It's sometimes good to bring concerns to attention of senior staff who are not always aware, in a large department, if things are going wrong.

[3furryfiends]

i think everyone has a similar experience. I have seen 24 different "doctors" each one has told me something different about my treatment!! but they all say you have to be seen every 4 weeks-but when you go to appointments they don't have any appointments for 7 weeks!! The NHS is collapsing and is now ruined by the managers. I have to get 8 buses for a return trip for my treatment and then wait hours. I recently had an emergency after 1 treatment and went back to the emergency dept-i had a 7 and a half hour wait !! And please don't mention the cost of travel-it soon mounts up.I don't know how I will manage when my fixed rate energy tariff ends in September.And one "doctor "has suggested taking a supplement -i hope they are going to pay!!I think the system also fails because there is no awareness of the whole patient.-you quickly become just a number to be shoved through the system. No-one in my experience considers the emotional impact/financial impact. I wanted support after diagnosis-saw optician again-he said see GP. Have seen several GPs-suggested wear heart monitor for 24 hours!!-why I asked!! -have blood tests!! why I asked!! But the best suggestion was have an ECG!! I quickly realised that I was being "fobbed off"

[Diamonds273]

I live in USA and here they recommend AReds vitamin supplement to help prevent peogression of wet macular.

[FireDrake]

HiFrom what I have read the best interval is 4 weeks. I have been continually fobbed off for periods of treatment and had to fight really hard to get injections at the 4 week interval. I have had to phone up to get appointments and threaten to complain and also complained . Recently I have had timely injections but things are starting to slip again but when I go to the clinic they are pretty quiet. I am sorry but you need to make a fuss complain and write to the head of the clinic. good luck

[fed13]

I do so agree with you FireDrake, but as Marathongirl24 says, "I do worry that the quieter people miss out"