Three-year-old with T1 diabetes, blindness advised imminent

[tobinen]

My nephew is three and was diagnosed with T1 diabetes two years ago. My sister's local NHS is pretty hopeless. She is not the most confident person and struggles with the NHS and pushing for things. She has been informed that his condition is leading to blindness soon. This may be the case.

Question for PHers: Is there anywhere recommended in the East Anglia region, private or otherwise, for a second opinion? To give him a proper check-over and review current treatment?

Thanks

[dirty doug]

Doesn’t sound good at all.

I was diagnosed type 1 age 32 & have always been seen at Ipswich Hospital Diabetic Centre & they have always been A1 with me.

Example - I was suspecting I was diabetic & was struggling to get a gp appointment. Someone tested my blood using his meter & it was about 29...

He advised just walking into the diabetic centre which I did & they saw me there and then.

I hope you get the help your family need ASAP

[anonymous-user]

tobinen said:

My nephew is three and was diagnosed with T1 diabetes two years ago. My sister's local NHS is pretty hopeless. She is not the most confident person and struggles with the NHS and pushing for things. She has been informed that his condition is leading to blindness soon. This may be the case.

Question for PHers: Is there anywhere recommended in the East Anglia region, private or otherwise, for a second opinion? To give him a proper check-over and review current treatment?

Thanks

How are they managing it? Sounds awful and he should have a diabetes nurse to guide and advise.

[caelite]

dirty doug said:

Example - I was suspecting I was diabetic & was struggling to get a gp appointment. Someone tested my blood using his meter & it was about 29...

He advised just walking into the diabetic centre which I did & they saw me there and then.

Pfft, that's the boring way of being diagnosed, the fun way being, in typical teenager fashion, ignoring the symptoms for multiple months, finally getting dragged to A&E by your mum & collapsing in the waiting room, then being poked full of all sorts for a week in an ICU.

That as side, I think the hospital clinics are somewhat hit & miss depending on the hospital. I attend a clinic in a NHS Glasgow/Clyde hospital and have had nothing but grief with the clinic, takes 6+ months to get a check up, I have had my appointments changed multiple times with no letter sent out, they also have stopped sending out appointment reminder letters, which is great for an appointment booked 6 months in advance. have also had a negative experience actually getting meaningful advice from the consultants there.

With that being said I now use my local GP to do my checkups. Can get an appointment there within 2 weeks, my GP does advise attending the hospital clinic, but is happy enough taking my HbA1c & poking at my feet. My uncle attends a hospital clinic in the same NHS jurisdiction, but a different hospital and he has nothing but good words about the service he receives, so it seems really to be on a hospital to hospital basis.

[mike9009]

I am a T1 diabetic, diagnosed at 7 years old and in a pretty rough state (severe weight loss and blood sugar through the roof!) 38 years later, I am still okay, but have had issues with my eyes. I can still see though and well enough to drive.

It seems very early to be diagnosing diabetic retinopathy after only two years, however if the diagnosis took a long time (ie symptoms missed) then it is definitely worth checking out further. I am very surprised if an issue had been found and no further action has been taken (eg referrals etc.). Treatment for this is getting better and better, with laser treatment and injections to stop the retinopathy.

Over the years you get some nurses/ doctors trying to 'scare' patients about their poor blood sugar control in a bid to get the blood control better. An ordinary optician should be able to advise in the first place by a simple eye examination - this should give a level of confidence without trying to embark on a mission within the NHS. Within the NHS a five minute eye examination or photography (after dilation) should confirm whether there are any issues. If there are issues, the NHS will act pretty quickly in my experience to prevent any sight loss.


If you are having trouble with seeing a doctor in a satisfactory time, then a quick visit to the opticians should help.

Mike

[tobinen]

Many thanks all (and the PM received)