Type 1 Alternative Diabetic Healthcare

doctorpotford

Member
Messages
5
Good morning.

I'm asking this question as I'm in a spin as to what options I have regarding my Diabetic healhcare.

The long and short of my situation is, for various reasons, I'm extremely dissatisfied with my care on the NHS.

Briefly the reasons are,
With each appointment I see a different doctor and all of them give the impression they're just not interested in any of my issues. They are contradictory with their feedback from doctor to doctor and it feels really impersonal.

Also I recently had my retinopathy screening which turns out i do need some lasering, but any concerns and questions I had were just dismissed and not answered. I am quite worried about having this done and the lady did absolutly nothing to ease my fears, if anything she made them far worse. No explanations, no showing me where the problems are, nothing.

There are many other examples I could give but I would be here all day!

So I'm searching for a little bit of advice and or direction of what to do next.

Ideally I would like a second opinion on my retinopathy screening and someone that actually listens to any issues I have and not fob me off!

Can I be referred to an alternative hospital or do I have to go private to find someone competent? Or maybe a combination of the two?

Any advice is much appreciated and desperately needed!

Thank you

Stuart
 

urbanracer

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Retired Moderator
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5,186
Type of diabetes
Type 1
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Not being able to eat as many chocolate digestives as I used to.
Good morning.

I'm asking this question as I'm in a spin as to what options I have regarding my Diabetic healhcare.

The long and short of my situation is, for various reasons, I'm extremely dissatisfied with my care on the NHS.

Briefly the reasons are,
With each appointment I see a different doctor and all of them give the impression they're just not interested in any of my issues. They are contradictory with their feedback from doctor to doctor and it feels really impersonal.

Also I recently had my retinopathy screening which turns out i do need some lasering, but any concerns and questions I had were just dismissed and not answered. I am quite worried about having this done and the lady did absolutly nothing to ease my fears, if anything she made them far worse. No explanations, no showing me where the problems are, nothing.

There are many other examples I could give but I would be here all day!

So I'm searching for a little bit of advice and or direction of what to do next.

Ideally I would like a second opinion on my retinopathy screening and someone that actually listens to any issues I have and not fob me off!

Can I be referred to an alternative hospital or do I have to go private to find someone competent? Or maybe a combination of the two?

Any advice is much appreciated and desperately needed!

Thank you

Stuart


What is it that you're unhappy with? Are you talking about the Endocrinology team at your local hospital or your GP's practice? Or both?

I accept that GP's can be a bit awkward, especially in a large practice where you see a different doctor every time you go there.

The thing about paying for private care is, if anything like my area, you will end up seeing the same doctors that work in the local hospital anyway and you'll be paying £100+ for every appointment. In my experience it's really only good for queue jumping and doesn't provide a greatly improved standard of care.
 
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Dark Horse

Well-Known Member
Messages
1,840
If you're at the lasering stage, you will have been moved out of 'screening' and into the care of the Hospital Eye Service. Although you have seen different doctors, they should all be part of a single team which has a lead consultant. If you are unhappy with your lead consultant, you can asked to be switched to a different team at the same hospital or you can choose adiffernt hospital. On the other hand, if it's better information and explanation you require, you might be better off lodging a complaint with PALS https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/ They would normally talk to your team on your behalf and they will likely arrange to give you the detailed explanations you require. This also has the added benefit that future communications may be improved which will benefit other patients who ask for information about their condition.
 

ROE100

Well-Known Member
Messages
73
Sorry to hear of your issues.

Alternatives will all depend on as others have mention who sees you (GP or Endo) currently.

Yes I have had similar issues (endo Appointments) always seeing a different person sometimes I would in insist on seeing the main guy but on a few occasision back in the day when you could have face to face appointments was told I can no longer insist on who I saw so it became pot luck. However you could give this a go and see if it works for you.

But I sense it is more the eye issue/worries that may be your main concern at this present time, I know we can't give medical advise but I sure others could help with what your worries are about your retinopathyissues as I am sure people have gone through this (personally I have not).

As @urbanracer says doing a private appointment you end up with the same NHS people.
 
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doctorpotford

Member
Messages
5
Thank you all for your replies.

You're right Dark Horse, I got my terminology a bit wrong regarding the lasering and I'll definitely be going down the PALS route with that one.

Regarding the Endo/gp question, I get seen by both, they do the same tests and get the same results but then give me different appraisals. Who do you listen to? I raise the issue about the duplication but get told its just the way it is. It's quite exasperating

So if I do go private, will I be able to see a specific Doctor?
My thinking is that if I can find someone who comes recommended and is competent it'll be worth every penny.

Thanks again

Stuart
 

EllieM

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Regarding the Endo/gp question, I get seen by both, they do the same tests and get the same results but then give me different appraisals. Who do you listen to? I raise the issue about the duplication but get told its just the way it is. It's quite exasperating

Personally, I listen to the endo. I've never found my GPs to be at all knowledgeable about T1, and to be fair they've always been happy for my endo to handle it. And I've actually found hospital teams to be better than private ones (51 years of T1 in UK Australia and now New Zealand), though maybe I've just been lucky with the hospitals.

I can't help with the eye stuff, as I've been at the on again off again background retinopathy stage for decades, but is there anything in particular that you'd like your hospital team to do for you as regards T1? Dietician, libre or pump access, etc etc? I find it helps to go into a session with as much idea as possible as to what you want to get out of it.

So if I do go private, will I be able to see a specific Doctor?
Yes. (As far as I know, my UK knowledge may be out of date.)

Correction. I did see a private eye specialist in Australia, and she was very good, and certainly gave me lots of useful info. (She didn't like quickly changing bgs and was quite invested in my hba1c result.)
 

urbanracer

Expert
Retired Moderator
Messages
5,186
Type of diabetes
Type 1
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Dislikes
Not being able to eat as many chocolate digestives as I used to.
Thank you all for your replies.

You're right Dark Horse, I got my terminology a bit wrong regarding the lasering and I'll definitely be going down the PALS route with that one.

Regarding the Endo/gp question, I get seen by both, they do the same tests and get the same results but then give me different appraisals. Who do you listen to? I raise the issue about the duplication but get told its just the way it is. It's quite exasperating

So if I do go private, will I be able to see a specific Doctor?
My thinking is that if I can find someone who comes recommended and is competent it'll be worth every penny.

Thanks again

Stuart

From my point of view, the Endocrinologist is the 'expert' or as close as you're likely to get to one. Your GP is (by definition) a "jack of all trades" and whilst some may have a good understanding of diabetes it would be wrong to expect that all of them will be the same.

There's a problem in my area as neither the hospital or the GP disclose blood test results to each other and it sounds as though you may be in a similar situation. When I get the results of the hosptital tests, I have to take a copy to my GP if I want it on record. So I go with the flow for the duplication of tests, and feel it's best to keep both parties in your camp as you don't know when you might need them. If you work it right, you can get your A1c checked at least a couple of times per year. If your appointments are right on top of each other, can you reschedule one of them?

As for seeing a specific doctor in private care, you are really only limited by how far you are willing to travel and what you can afford. If you have a private hospital in your area, give them a call (or look at their website) and find out which doctors run clinics there.
 

TerriH

Active Member
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34
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Insulin
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Noise, hooligan drivers and most of all rude, selfish and totally inconsiderate people.
So sorry to read about your troubles, Doctor Potford. The NHS has never been one of the best for diabetics. The Retinopathy screening ground to a halt at the beginning of the pandemic and has only just restarted here in Wales so I went to a local optician and paid £10 extra for a "deep" screening which can at least pick out any problems.
In my personal experience if the retinopathy is mild or has only just started, the sooner it is treated the better but I would not advise any treatment which involves injections into the eyes. I have seen the procedure and it is horrendous.
Good luck and get treatment a.s.a.p.
 

Struma

Well-Known Member
Messages
536
Type of diabetes
LADA
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Other
Retinal photography has continued in my area of EofE, with perhaps 2 months behind usual schedule. I'm really grateful for this.