Type 2 UK 91 yo T2 eye test protocol?

[EllieM]

OK, so my dad (with a UK Wiltshire doctor) has been T2 since about 2010, worked his way up to gliclazide and then down to zero meds after I got him to go low carb 2 or 3 years ago. I think his last hba1c was around 53-55.

He locked down for a year during covid so delayed his annual eye test till after vaccination, and finally went to see his optician for a regular test back in April (ish). He got no feedback from that but got a request for a hospital appointment last week. Again no feedback from that, though they did give him a time and date when they would phone him with the results.

A few days later he got a request to make an appointment at a different eye clinic, who had no idea that he'd just had the other appointment. When he asked them to check, they phoned back to say that the first hospital appointment hadn't checked the thing that they wanted to check, but not to worry, it would only take 30 minutes to do this, though he won't be able to drive for 6 hours afterwards.

Now, he has no idea what they all wanted to check, other than everyone so far took photos, and is bewildered as to why the first hospital appointment didn't check whatever it was that the second hospital appointment want to. No one has given him any information. (He's had cataracts done a few years back, but no diabetic treatment yet that I know of.)

I thought that when people got referred for hospital checks they normally got a letter in the mail with some sort of reference to further check ups being needed because of xyz

Does anyone have any insight into the process/procedure here?

 

[Hopeful34]

When I got referred to the hospital, I was given the results during the consultation, and either told to make my next appointment on the way out if urgent treatment was to be within 2-3 weeks, or got told they'd send me a letter to be seen in x amount of months. This had continued to be the process, although the time between appointments is usually a lot longer than originally stated. Hope your dad can get some answers soon Ellie.

 

[Jaylee]

OK, so my dad (with a UK Wiltshire doctor) has been T2 since about 2010, worked his way up to gliclazide and then down to zero meds after I got him to go low carb 2 or 3 years ago. I think his last hba1c was around 53-55.

He locked down for a year during covid so delayed his annual eye test till after vaccination, and finally went to see his optician for a regular test back in April (ish). He got no feedback from that but got a request for a hospital appointment last week. Again no feedback from that, though they did give him a time and date when they would phone him with the results.

A few days later he got a request to make an appointment at a different eye clinic, who had no idea that he'd just had the other appointment. When he asked them to check, they phoned back to say that the first hospital appointment hadn't checked the thing that they wanted to check, but not to worry, it would only take 30 minutes to do this, though he won't be able to drive for 6 hours afterwards.

Now, he has no idea what they all wanted to check, other than everyone so far took photos, and is bewildered as to why the first hospital appointment didn't check whatever it was that the second hospital appointment want to. No one has given him any information. (He's had cataracts done a few years back, but no diabetic treatment yet that I know of.)

I thought that when people got referred for hospital checks they normally got a letter in the mail with some sort of reference to further check ups being needed because of xyz

Does anyone have any insight into the process/procedure here?

Hi,

Wiltshire? Opticians? Resulting in a referral to an ophthalmologist?

Sounds a little familiar..

Did the scans sort of look like this..? (& not the usual picture of Mars...)

 

[EllieM]

I don't think he's seen the images unfortunately.

 

[TriciaWs]

Pre covid I had diabetic eye checks at the hospital diabetic clinic once a year - with eye drops in first so they can get a better look. They always give me the results at the time. Then I get a letter a few months later reminding me to book my next annual check. I've never had a letter with the results, I thought that only happened if they find you need treatment.

Ordinary opticians don't do diabetic eye checks, and again will tell you at the time if they see anything - but no letter as far as I'm aware. I was having issues with my sight (not diabetic related) a few years ago and my optician told me to ask my GP to refer me to the eye clinic at the hospital. The ophthalmology (eye) clinic doesn't do diabetic eye checks here - they are two separate departments.

 

[TriciaWs]

Now, he has no idea what they all wanted to check, other than everyone so far took photos, and is bewildered as to why the first hospital appointment didn't check whatever it was that the second hospital appointment want to. No one has given him any information. (He's had cataracts done a few years back, but no diabetic treatment yet that I know of.)

I thought that when people got referred for hospital checks they normally got a letter in the mail with some sort of reference to further check ups being needed because of xyz

Does anyone have any insight into the process/procedure here?

Can you or another member of the family go with him next time to check what he is told? Even during tight covid restrictions people can go in with a 'carer'.

 

[EllieM]

Can you or another member of the family go with him next time to check what he is told? Even during tight covid restrictions people can go in with a 'carer'.

It's a thought. My brother will drive him there. (I'm in New Zealand so not in a position to go with him.) He's pretty independent so might not appreciate it but I will suggest it. Honestly, his main issue is that they didn't do the right tests, whatever they were, at the first hospital appointment, given that the second appointment was in response to the test at the optician not the first hospital appointment. There seems to be a certain amount of left hand not knowing what the right hand is doing and no one is telling him anything.

 

[Lakeslover]

I’m guessing that the first hospital appointment was his routine retinopathy scan, and the second the result of a referral from his optician to investigate something they saw at his eye test. Likely to be two different departments, and very likely the team that do retinopathy scanning were not aware of the other referral.

 

[EllieM]

I’m guessing that the first hospital appointment was his routine retinopathy scan, and the second the result of a referral from his optician to investigate something they saw at his eye test. Likely to be two different departments, and very likely the team that do retinopathy scanning were not aware of the other referral.

Thanks, that actually makes sense.

 

[Dark Horse]

Your father's GP should have the information about which clinics your father has been referred to and what the results are - he can phone the GP surgery to ask.

Eye clinics are run by specialists in the condition under investigation - for example, a clinic for glaucoma may not be able to provide grading for diabetic retinopathy (and vice versa).

 

[Jaylee]

I don't think he's seen the images unfortunately.

To be fair, I was referred, seen regarding my condition & treated in the next county, Bath.

I asked to see the images on the consultant's computer after the scan?
Some are a little more engaging & forthcoming than others..

What I do experience lately with the C19 thing going on is a little disarray with the departments?
I've had the "all clear" on the last few scans just before the pandemic so the next check up has been postponed untill further notice.

 

[AndBreathe]

I'd totally agree your father's GP is the first port of call here. Assuming the first appointment was his retinopathy scan his GP will have had the results of that, and they receive additional detail if anything at all is picked up; whether needing action or not.

Even if they know nothing, they should know where to start digging.

It must be so frustrating for you all @EllieM

 

[EllieM]

It must be so frustrating for you all

Well, he does, in theory, have a time at which they are going to ring him about the first hospital appointment. And he's pretty patient, and is happy to go to as many appointments as he needs to keep his eyesight. It's the lack of communication between hospitals that is frustrating. I'm hopeful that it's nothing too serious, as in the global scheme of things he hasn't been diabetic that long and his levels have never been particularly high, but we'll just have to wait and see. He probably went 18 months (worst case 2 years?) without a test due to lockdown, which am guessing is quite common.

I was confused because of all the people who post om here asking about their referrals that actually have some information about their condition....

Thanks for all the help from everyone who posted.

 

[Jaylee]

Well, he does, in theory, have a time at which they are going to ring him about the first hospital appointment. And he's pretty patient, and is happy to go to as many appointments as he needs to keep his eyesight. It's the lack of communication between hospitals that is frustrating. I'm hopeful that it's nothing too serious, as in the global scheme of things he hasn't been diabetic that long and his levels have never been particularly high, but we'll just have to wait and see. He probably went 18 months (worst case 2 years?) without a test due to lockdown, which am guessing is quite common.

I was confused because of all the people who post om here asking about their referrals that actually have some information about their condition....

Thanks for all the help from everyone who posted.

Ellie, what I was diagnosed with was not what the optitian thought was the issue when they asked for my GP's details & I had a referral?
After the scans at the hospital. I asked about the "cataracts" mentioned by the optician to the consultant. "It's not cataracts that is the concern." He replied. Sooooooooooo? Are we talking retinopathy.? He shock his head.
It was like pulling teeth.. So it's not retinopathy. Is it a book? Is it a film...?

The treatment I can't fault. But even before COVID, in my experience they likes to take there time doing stuff round yer...

 

[EllieM]

After the scans at the hospital. I asked about the "cataracts" mentioned by the optician to the consultant. "It's not cataracts that is the concern." He replied. Sooooooooooo? Are we talking retinopathy.? He shock his head.
It was like pulling teeth.. So it's not retinopathy. Is it a book? Is it a film...?

Ah, sounds like I'd better encourage my brother to go in with him. My dad would probably accept the "you don't need to know the problem" treatment, my brother would be more assertive.

Of course, I could tell him the line "could you give me a condition to write down so my T1 of 50 years daughter in New Zealand knows what is happening?" ...

 

[Jaylee]

Ah, sounds like I'd better encourage my brother to go in with him. My dad would probably accept the "you don't need to know the problem" treatment, my brother would be more assertive.

Of course, I could tell him the line "could you give me a condition to write down so my T1 of 50 years daughter in New Zealand knows what is happening?" ...

Oh, if was eventually told what was the issue.. A condition id never even heard of.. Along with the proposed treatment.
I don't feel the consultant I initially saw was good at dishing out bad news?
However, I can only empathise with your dad as a fellow eye patient in the same county?

Knowing what you are dealing with helps with the decision making.

 

[AndBreathe]

Well, he does, in theory, have a time at which they are going to ring him about the first hospital appointment. And he's pretty patient, and is happy to go to as many appointments as he needs to keep his eyesight. It's the lack of communication between hospitals that is frustrating. I'm hopeful that it's nothing too serious, as in the global scheme of things he hasn't been diabetic that long and his levels have never been particularly high, but we'll just have to wait and see. He probably went 18 months (worst case 2 years?) without a test due to lockdown, which am guessing is quite common.

I was confused because of all the people who post om here asking about their referrals that actually have some information about their condition....

Thanks for all the help from everyone who posted.

Ellie - In my experience some of the most clever people are inept when it comes to communication. Sometimes I think their brain goes faster than they can communicate, and some think folks don't need to know, and as the case I had recently they know the names of a condition, but virtually nothing more than that. It could be your father/family just haven't spoken to the right people yet.

Of course, that's all very well, until the appointment is some weeks away.

As I have said many times, we are so, SO lucky to have the NHS, but it has gaping imperfections sometimes.

I hope your Dad (and you, of course) isn't going to have to wait to long for clarification

 

[JohnEGreen]

There should have been a letter from the clinic to the GP and a copy to the patient this is the normal procedure Judith is down stairs typing them for the department she works in at the local hospital as I type this post upstairs. The work load involved means they are nearly always up to weeks behind and playing catchup especially since Covid.

Of course this may differ between hospital trusts.

 

[Hopeful34]

We used to routinely get letters from some departments of the hospital following clinic appointments. Now we have to ask, and even then sometimes aren't sent them, and it can be a very long winded process at times. Sooooooo frustrating. Have even left a sae when I've been at appointment or asked for them by email, but they're not allowed to email them.

 

[EllieM]

So, an update. The hospital appointment that he's had (and took most of a morning) was to test for glaucoma and occular hypertension, all OK. The on he hasn't yet had is a retinopathy one. My mind absolutely boggles that they couldn't do both at the same time....