Urgent Referral To Ophthalmologist, Help!

[briped]

Although, there are no guarantees, he thinks there is a good chance he will see an improvement.

Holding my fingers crossed for both of you. Is your husband less anxious after the consultation?

 

[BibaBee]

Yes, he's so much better. It's a long road ahead, but at least he is now looking forward.

 

[briped]

Yes, he's so much better.

I'm glad to hear it. Please keep us posted

 

[Dark Horse]

@sally and james You were right. The consultant was lovely and really reassured us. As I suspected, he has Macular Edema in both eyes, thankfully worst in his weaker eye. He will need injections in both eyes, laser in his weaker eye. Although, there are no guarantees, he thinks there is a good chance he will see an improvement. We're starting the treatment privately initially, then moving on to NHS.

Thank you so much to everyone for your support. We have a long road ahead, but I feel like we cleared the first hurdle.

So there weren't any vitreous haemorrhages, after all?

 

[BibaBee]

So there weren't any vitreous haemorrhages, after all?

There is significant bleeding in the right eye, so that will need laser and possibly surgery longer term. There is thankfully less in the left, so they will treat with injections, then assess.

 

[Dark Horse]

There is significant bleeding in the right eye, so that will need laser and possibly surgery longer term. There is thankfully less in the left, so they will treat with injections, then assess.

Ah, OK. It was just that you mentioned macular oedema (which doesn't cause vitreous haemorrhage) but didn't mention proliferative diabetic retinopathy or PDR (which can cause vitreous haemorrhages). I know you mentioned laser, but there are different types and sometimes macular oedema is treated with macular laser. The type used for PDR is called PRP (pan-retinal photocoagulation) and is applied to the periphery of the retina.

There is some good information about injections for macular oedema here:-
http://www.diabeticretinopathy.org.uk/lucentispatientsdr.htm
and good information about laser treatment here:-
http://www.diabeticretinopathy.org.uk/laserdiabetic_retinopathy.html

 

[BibaBee]

Two steps forward and one huge step back! Sorry for the length of time for an update, a lot has happened. My husband had his first treatment privately (Avastin injections) and noticed some improvement about a week afterwards. This was enough to get him up on his feet again, we started walking in the last week and he has been seeing family again. His depression was starting to lift. His BG levels are right down, off the insulin and he's only half a stone off a healthy BMI.

We could only afford one round of treatment privately, so had to transfer to the NHS. We had our first appointment yesterday at the Consultant's clinic, but we were seen by a Dr not the consultant. It was an absolute nightmare from start to finish. Despite being warned about my husband's anxiety issues and fragile mental state, the DR was completely insensitive and quite aggressive in his approach. I realise they cannot sugar coat things, but there are tactful ways of discussing prognosis. Even though my husband has seen improvement after the first injection, the Dr seemed quite dismissive that we would see much more improvement. My understanding is that there are no guarantees, but even Consultants cannot predict who will repond effectively to treatment? This came as a crushing blow to my husband, who has retreated to bed and does not want to talk.

The diagnosis is non-proliferative retinopathy in the left eye, severe proliferative retinopathy in the right. Severe maculopathy in both eyes, but with the right (the impaired eye then worst). The treatment plan is Eylea injections in both, laser just in the right to begin with.

I intend to speak with PALS on Monday and see if there is anyway we can see a more sympathetic clinician next time. I honestly don't think my husband could go through that again and it will be a struggle to get him there. I just wish we could afford to go through the whole thing privately. Has anyone else had a similar experience?

 

[sally and james]

We could only afford one round of treatment privately, so had to transfer to the NHS. We had our first appointment yesterday at the Consultant's clinic, but we were seen by a Dr not the consultant. It was an absolute nightmare from start to finish.

I'm very sorry to have to say that we have also found that the NHS is a nightmare as far as our local specialist eye unit is concerned. (Let's hope it's the same one as yours so that there's only one like that!). Medical staff: scruffy, rude, insensitive, as negative as it is possible to be, nothing positive and relatives are in the way. Clearly nobody has told them about the placebo effect, where a reassuring word, politely expressed by a smiling professional in clean, neat clothes will do as much as handfuls of pills. (Get's off hobby horse, rant over.)
One way of looking at it: I have a very wealthy friend, a life long T1, who does use the local NHS facility and, although she shares my views, she says that she sits there visualising the money she is saving and what she will do with it!! But that is a positive decision on her part and she's not new to it all, as you are. Can family help you out? It may not be something that goes on and on, just a matter of getting over certain hurdles to achieve stability.
Sally

 

[DCUKMod]

Two steps forward and one huge step back! Sorry for the length of time for an update, a lot has happened. My husband had his first treatment privately (Avastin injections) and noticed some improvement about a week afterwards. This was enough to get him up on his feet again, we started walking in the last week and he has been seeing family again. His depression was starting to lift. His BG levels are right down, off the insulin and he's only half a stone off a healthy BMI.

We could only afford one round of treatment privately, so had to transfer to the NHS. We had our first appointment yesterday at the Consultant's clinic, but we were seen by a Dr not the consultant. It was an absolute nightmare from start to finish. Despite being warned about my husband's anxiety issues and fragile mental state, the DR was completely insensitive and quite aggressive in his approach. I realise they cannot sugar coat things, but there are tactful ways of discussing prognosis. Even though my husband has seen improvement after the first injection, the Dr seemed quite dismissive that we would see much more improvement. My understanding is that there are no guarantees, but even Consultants cannot predict who will repond effectively to treatment? This came as a crushing blow to my husband, who has retreated to bed and does not want to talk.

The diagnosis is non-proliferative retinopathy in the left eye, severe proliferative retinopathy in the right. Severe maculopathy in both eyes, but with the right (the impaired eye then worst). The treatment plan is Eylea injections in both, laser just in the right to begin with.

I intend to speak with PALS on Monday and see if there is anyway we can see a more sympathetic clinician next time. I honestly don't think my husband could go through that again and it will be a struggle to get him there. I just wish we could afford to go through the whole thing privately. Has anyone else had a similar experience?

BibaBee - What a shame about the setback. The NHS can be a bit of a lottery, but there are some things that could be useful to have in your armoury.

On the upside, your GP can ask for your treatment to be transferred, and you can nominate the Consultant whom you want to lead your husband's care. A step further to that is your GP can make that referral, and be specific about seeing that perereson, not omone in their team. I know this from personal experience, when I had seen someone (not diabetes or eye-related) and hadn't been incredibly impressed. My GP asked if I would like to see someone else, and did I know whom I would like to see. She then made that specific enquiry.

Should you go down that route, it has the potential to impact waiting times, as the person you want to see my not be the first appointment available. Secondly, when you rerceive the appointment, you should call and check you are seeing the person, and not one of their team. Again, that can impact waiting times.

Either way, your journey is challenging, but please don't give up on it.

 

[BibaBee]

Thanks @sally and james and @DCUKMod

I'm afraid we're looking at 6 injections in both eyes for the next six months, then every two months. It would cost more than £16000, even before you add the cost of laser. My husband can't work right now and family can't help to that extent.

I will speak to our GP and see what they say. I still plan to speak to PALS too, as I feel I need to complain about the Dr's attitude.

 

[BibaBee]

I spoke with PALS this morning and have filed a formal written complaint. They are going to see if we can see the lead consultant and I have asked to speak with her first.

I found this article earlier and wonder if it's true....

https://www.theguardian.com/healthc...2015/jul/06/nhs-patients-complain-better-care

 

[sally and james]

I found this article earlier and wonder if it's true....

https://www.theguardian.com/healthc...2015/jul/06/nhs-patients-complain-better-care

Let's hope that, for you, it is true, but it perhaps wouldn't be a good thing if large numbers of people began to use it as a tool for improved treatment.
Best of luck with it all,
Sally

 

[BibaBee]

I absolutely agree....it shouldn't be this way at all.

I'm still reeling from all of this. He hasn't left bed for the last three days.

 

[BibaBee]

There is an alternative to Eylea that is way less expensive, but in America is completely out of pocket because it has not yet been approved by our FDA.

https://www.aao.org/eye-health/diseases/avastin-eylea-lucentis-difference

Here eylea is upwards of $1200 an injection, so once I am on medicare, that is an incredible cost whereas Avastin is $55

Another option is an injectible tiny bullet that lasts three months, reducing overall cost.

Thanks, Avastin is cheaper in the UK (and not licensed for use by the NHS), which is why we paid for two Avastin injections privately to get him started. The cost was about £1800 altogether......Eylea or Lucentis would have been more expensive. The cost of the implants are very pricey and not an option for us. We have very little savings and my husband is not working because of this, so money is tight.

We can get this treatment for free via the NHS, but it is a lottery as to who we will see and the stress and damage this causes to his mental health. Generally our healthcare system is brilliant, but it can feel a bit like a sausage machine at times.

 

[DCUKMod]

Thanks, Avastin is cheaper in the UK (and not licensed for use by the NHS), which is why we paid for two Avastin injections privately to get him started. The cost was about £1800 altogether......Eylea or Lucentis would have been more expensive. The cost of the implants are very pricey and not an option for us. We have very little savings and my husband is not working because of this, so money is tight.

We can get this treatment for free via the NHS, but it is a lottery as to who we will see and the stress and damage this causes to his mental health. Generally our healthcare system is brilliant, but it can feel a bit like a sausage machine at times.

BibaBee - Please consider asking your GP to refer you to see the person you saw privately, on the NHS. There are very few doctors working in the private sector, at a senior level, who do not do at least some NHS work. Indeed the mix, as I understand it, is usually mainly NHS with some private. (Personally, I know of one cosmetic surgeon and one endocrinologist who are wholly private, but they went that way based on experience and making the most, financially, of their final working years prior to retirement. There are lots of wholly private GPs.) Your GP can make that referral. It is a named referral, and can be specific to the person, not under their care (as in can be seen by their team).

I can understand you want things to happen urgently (and I would feel the same too), but if your husband will not go to this other person, he could be better waiting an extra short while to see someone he trusts than refuse, point blank, to attend, and therefore see nobody.

Obviously that comment is not taking into any account his physical or mental conditions. I'm just trying to apply some logic to the options availabel to you, based on the picture you have painted of your current position.

 

[BibaBee]

BibaBee - Please consider asking your GP to refer you to see the person you saw privately, on the NHS. There are very few doctors working in the private sector, at a senior level, who do not do at least some NHS work. Indeed the mix, as I understand it, is usually mainly NHS with some private. (Personally, I know of one cosmetic surgeon and one endocrinologist who are wholly private, but they went that way based on experience and making the most, financially, of their final working years prior to retirement. There are lots of wholly private GPs.) Your GP can make that referral. It is a named referral, and can be specific to the person, not under their care (as in can be seen by their team).

I can understand you want things to happen urgently (and I would feel the same too), but if your husband will not go to this other person, he could be better waiting an extra short while to see someone he trusts than refuse, point blank, to attend, and therefore see nobody.

Obviously that comment is not taking into any account his physical or mental conditions. I'm just trying to apply some logic to the options availabel to you, based on the picture you have painted of your current position.

Thank you so much. Unfortunately, the consultant we saw privately is not the Clincal Lead Consultant for Diabetic Eye Disease at the hospital, although he does work there. He is responsible for the surgical side, such as vitrectomies. So, we can't see him for this on the NHS. I do intend to contact him and see if he can recommend a colleague at any other hospitals locally. We have a few other hospital trusts locally, so there are options. I'm also prepared to give the Lead Consultant at the current hospital the benefit of the doubt initially, as clearly we saw a member of her junior staff. We'll see how they respond to our complaint and I'll speak to the GP about being referred elsewhere if we're not happy.

In the meantime, my husband is back in bed and we have waved goodbye to levels in the 5s and 6s. He is now mostly in the 7s due to stress and no exercise. Unfortunately, the improvement he experienced in his vision after the first injections (which were pretty much dismissed by the doctor) has disappeared. Not sure if this is because the effects of the injection have worn off. This has just added to his depression.

One blessing, is that our first appointments have come through for laser and injections in the next couple of weeks. Looks like he may be able to engage with these (with a lot of persuasion), without seeing that idiot again.

 

[DCUKMod]

If your husband has active bleeding or other severe symptoms, he cannot just wait around until he gets a person he prefers

I had one Eylea injection under horrible circumstances because I was prepped with povidone iodine to which I am allergic. I had to endure itching and wanting to scrach etc. for a month BUT it healed the leaks and it was found I could wait 6 months to the next injection. My problem, you see, is not the anti-VEGF injections themselves, but the preparation before the injection

Please don't think my suggestion was anything other than an option if the OP's husband was refusing to get out of bed or attent hospital meaning nothing would happen. I also stated it took no assessment of his medical condition into account.

My suggestion was a safety net suggestion to get something done in a situation where doing zero looked like a serious potential.

In my world, I would be beating down doors to be seen asap, but we're not talking about me here. I recognise that not everyone reacts the same way to experiences others might find accepteable or even unpalatable, but endurable, and sometimes a very heavily compromise situation is better than the problem being ignored - consciously or unconsciously.

 

[BibaBee]

If your husband has active bleeding or other severe symptoms, he cannot just wait around until he gets a person he prefers

I had one Eylea injection under horrible circumstances because I was prepped with povidone iodine to which I am allergic. I had to endure itching and wanting to scrach etc. for a month BUT it healed the leaks and it was found I could wait 6 months to the next injection. My problem, you see, is not the anti-VEGF injections themselves, but the preparation before the injection

Please don't think my suggestion was anything other than an option if the OP's husband was refusing to get out of bed or attent hospital meaning nothing would happen. I also stated it took no assessment of his medical condition into account.

My suggestion was a safety net suggestion to get something done in a situation where doing zero looked like a serious potential.

In my world, I would be beating down doors to be seen asap, but we're not talking about me here. I recognise that not everyone reacts the same way to experiences others might find accepteable or even unpalatable, but endurable, and sometimes a very heavily compromise situation is better than the problem being ignored - consciously or unconsciously.

Thank you both. There is a danger he may not get out of bed for treatment. We are on day 5 now and he still very depressed and refusing to get up. We have an appointment for laser on Tuesday next week, injections the following week. He hasn't said he won't attend and a lot will depend on who he sees. If it is just the treatment and he doesn't need to discuss prognosis, we may get through it okay. I have asked PALS to clarify what will happen. We have appointments for further diagnostics and consultation, but I can cancel these and rearrange for a later date to buy us some time.

My plan is to get the treatment started and make enquiries about a referral elsewhere. I don't want to delay treatment, but it would be good to know our options. Thanks for your support. This is unbearable for him and I'm desperately trying to hold it together.

 

[BibaBee]

*Update*. I just wanted to let you know that my husband is doing really well. He's just had his third set of anti-Vegf injections on both eyes and the treatment is working! He has also had one lot of laser on the right, with another session booked in soon. We also have a new Opthamologist, who is absolutely lovely. She's really pleased with his progress and doesn't think there is too much damage in his left eye (the good one). Even better, his he is back to 20/20 vision in his left eye! He still has a little distortion and night vision isn't great, but not too bad at all. He is so lucky!

He is now off insulin and his blood sugar levels are well controlled (average 6.7). He's getting out for three walks a day, has lost about 20kg taking him to a healthy BMI and tentatively working again. I've also lost a similar amount of weight through eating LCHF.

Thank you so much to everyone who offered advice and support. It helped me through some dark times.

 

[Peppergirl]

hi @BibaBee that's great news
best wishes to your husband