Retinal Scans- opt out?

[Lizzzie]

Hello! I have a question regarding retinal scans. I understand the importance of having retinal scans and have had them for years with either no or minor (which disappear again next scan) signs of retinopathy. However, my husband has been ill with cancer for a year, may get ill again and right now I have my hands full with various things have let the scans lapse. For my own mental health and time availability I would like to let it lapse for a while longer; I understand the risks of this and was of the opinion it was my decision to make. However I had a letter today from my (very good, switched on) hospital doctor at a reknown, good diabetes clinic, strongly implying that if I didn't get a retinal scan, they would take my pump away from me. I don't understand how this helps the NHS or my diabetes control and am slightly shocked that they are allowed to do this. it feels manipulative and against the basic rules of consent. Surely, if anything that increases my chances of eye-related complications. Has anyone else had this experience?

 

[Lizzzie]

I was planning to go for a scan again at some point and know it's counter-productive but almost don't want to go for a retinal scan now to show it's not OK to do that.

 

[Lizzzie]

At the same time I don't want to trot in to have a scan (which I probably will do) and have them think 'oh look! It worked! We'll do that again' because it actually feels incredibly controlling and inappropriate. Do I have any grounds to complain?

 

[Leadinglights]

Unless it takes you a long time to get there then the time taken to get it done is not very long usually no more than 30minites and better to be safe than risk that any damage to your eyes is not picked up in a timely fashion. You would be less use caring for your husband if you had a problem and then needed extensive treatment. Your health is important as well.
It does seen out of order to be threatening though. Maybe speaking to them and explaining your situation.
But I would urge you to have your screening.
There are several people here having to go through treatment for eye problems.

 

[CliffH]

Hello! I have a question regarding retinal scans. I understand the importance of having retinal scans and have had them for years with either no or minor (which disappear again next scan) signs of retinopathy. However, my husband has been ill with cancer for a year, may get ill again and right now I have my hands full with various things have let the scans lapse. For my own mental health and time availability I would like to let it lapse for a while longer; I understand the risks of this and was of the opinion it was my decision to make. However I had a letter today from my (very good, switched on) hospital doctor at a reknown, good diabetes clinic, strongly implying that if I didn't get a retinal scan, they would take my pump away from me. I don't understand how this helps the NHS or my diabetes control and am slightly shocked that they are allowed to do this. it feels manipulative and against the basic rules of consent. Surely, if anything that increases my chances of eye-related complications. Has anyone else had this experience?

Without wishing to comment on the wisdom or not of your decision, you may want to remind your doctor of the Mental Capacity Act: that is, people have the right to make 'unwise' decisions, as long as those decisions are 'informed' decisions.

 

[JITR]

@Lizzzie

I have no opinion on your decision. Last month my optician strongly advised me to accept an invitation to screening for retinopathy. She had just shown me a high resolution image of the blood vessels in my eye. There was no sign of retinopathy at all. There never has been, but she always gives the same advice.

 

[Satan’s little helper]

I was planning to go for a scan again at some point and know it's counter-productive but almost don't want to go for a retinal scan now to show it's not OK to do that.

Hello, from my personal view. I don’t like to be “beholding” to this rigmarole either. But it keeps the DVLA sweet on the privilege to drive front. The irony is I have to take the bus to the appointments. They bang in drops.

 

[AndBreathe]

I winder if you signed a form of contract for your pump, that might have included your commitment to all checks and monitoring as required?

I have a little something from the NHS to help monitor a condition I have been diagnosed with. When I signed for the little gizmo, the contract stated my "borrowing" the device was contingent on my regular monitoring and certain other tests.

I know at the time of signing I was probably as much focused on having "the tools" than the conditions attaching to it.

I do understand how distracting others' illness can be, but you could be reassured by having the test.

Anyway, whichever way you choose to go, I wish you and your husband well. You're going through a horrible time. I hope you have happier, healthier times ahead.

 

[mashedupmatt]

Sorry to hear about your husband's cancer That seems very harsh, threatening to take away your pump away - at my last retinal scan, they said that I did not have to have another one for two years though

 

[goodybags]

Sorry to hear your situation, can’t imagine what your going through
BUT, as someone who in the past didn’t attend the annual retinal scans (when invited)
I would say definitely don’t skip these annual check ups,
I appreciate it can take up as they say on the letter several hours for the appointment, personally I did in the past (about 12 year ago) skip a year then for what ever reason dropped off their system

When I realised I had a problem with my eye sight
I contacted my optician it was them who then picked up my eye problems
I’ve now been undergoing treatment at the hospital initially on both eyes for the last 10 years (in one eye the treatment is still ongoing)

 

[agentmole]

I have a problem with retinopathy in my left eye and a couple of years ago I had 16 eye injections, a very unpleasant experience and sadly the treatment never helped the condition, luckily my right eye is good and i’m scanned regularly.

 

[goodybags]

I have a problem with retinopathy in my left eye and a couple of years ago I had 16 eye injections, a very unpleasant experience and sadly the treatment never helped the condition, luckily my right eye is good and i’m scanned regularly.

I just liked your post @agentmole, but why ?
not because I like the fact you have retinopathy
but because your Right Eye is good and your raising awareness
to remind anyone who sees your post of how our eyes can be affected

 

[CliffH]

Hello! I have a question regarding retinal scans. I understand the importance of having retinal scans and have had them for years with either no or minor (which disappear again next scan) signs of retinopathy. However, my husband has been ill with cancer for a year, may get ill again and right now I have my hands full with various things have let the scans lapse. For my own mental health and time availability I would like to let it lapse for a while longer; I understand the risks of this and was of the opinion it was my decision to make. However I had a letter today from my (very good, switched on) hospital doctor at a reknown, good diabetes clinic, strongly implying that if I didn't get a retinal scan, they would take my pump away from me. I don't understand how this helps the NHS or my diabetes control and am slightly shocked that they are allowed to do this. it feels manipulative and against the basic rules of consent. Surely, if anything that increases my chances of eye-related complications. Has anyone else had this experience?

I think that opticians/opthalmologists are often underrated because most of them aren't called 'Doctor'. However, they are of course highly trained clinicians and can often spot early warning signs of serious conditions.

In my own case, it was my optician who identified that I'd developed late-onset Type 1, by spotting a tiny retinal bleed at a routine sight test and sending me to my GP. Without my optician doing that, I could have ended up very ill before anyone (including me) would have considered diabetes.