Annoyed at the NHS and don’t know what to do

[TypeZero.]

Just a brief background

Diagnosed: 20/04/2020
Eye condition revealed: 20/08/2020
Referral initiation: 03/09/2020

1) So I had an eye condition revealed in August, 2)during this time I moved to a different city in a different county.
3) I signed up to a GP ASAP then was referred at the start of September,
4) I finally get an appointment for 20th October but just today I received a random call when I was at work from a diabetes consultant,
5) I thought it was a 5 min chat before the appointment on the 20th October but what the hospital has done is actually cancel the appointment on the 20th and rebooked me in for a phone call
6) So it was a very very brief phone call and I didn’t really say much to the consultant and now I don’t know what to do

On the system it shows that I’ve had an appointment but I didn’t get the care I need. I’m fed up because it took a month and a half just to get an appointment and now they’ve cancelled and converted into a 5 min call. If I knew that was the appointment I would’ve gone into much more detail but they didn’t tell me I was so confused. They also changed my doctor aswell, initially booked with a female doctor but in the morning a man called me. I only realised he was a consultant when I came home and found a letter saying my appointment has been cancelled and rebooked, I called the NHS referral service and they said the appointment was today 9:20. I told the male doctor that I had an appointment in a little over a week so he didn’t think to go in detail either.

I don’t know what to do. Please give me advice. I’ve been waiting weeks and weeks for a diabetic eye condition to be checked. I’m low-key considering not injecting any insulin to put myself in DKA so I can receive some medical attention. I’m nearly 6 months into my diagnosis and only had 1 appointment with a consultant and a few phone calls with a dietician and the 5 min chat with the male doctor I mentioned above. I’m 100% sure I’m supposed to have more regular appointments because when I was in London I had been booked for an appointment every month and sometimes double booked to have 2 appointments on top of each other but these had to be cancelled due to my relocation

 

[ert]

I'm sorry you're having a difficult time getting an appointment. A lot of diabetics have eye images taken by an optometrist. Would this be something applicable to you for your condition? The images would be sent to your GP and Specialist.

 

[TypeZero.]

I'm sorry you're having a difficult time getting an appointment. A lot of diabetics have eye images taken by an optometrist? Would this be something applicable to you for your condition? The images would be sent to your GP and Specialist.

Already had the screening with an optometrist

“Some haemorrhage within macula” and also apparently I need to be further examined as it wasn’t entirely clear. Something called a slit lamp biomicroscopy but this was from my London hospital and just when I was going to have this done I moved to another city

 

[Mr_Pot]

Already had the screening with an optometrist

“Some haemorrhage within macula” and also apparently I need to be further examined as it wasn’t entirely clear. Something called a slit lamp biomicroscopy but this was from my London hospital and just when I was going to have this done I moved to another city

I had a slit lamp test at Specsavers. In my case because I had persistant floaters. The test involved having dilation drops and then a hand held microscope examination while illuminating the back of the eye with a very bright light. The light has a thin vertical beam (slit) so they can move it across the back of the eye and examine areas in detail. There is no photography involved but no doubt they would refer you to a hospital if they find anything serious enough.

 

[ert]

Already had the screening with an optometrist

“Some haemorrhage within macula” and also apparently I need to be further examined as it wasn’t entirely clear. Something called a slit lamp biomicroscopy but this was from my London hospital and just when I was going to have this done I moved to another city

Could you get a GP referral to an ophthalmologist, another specialist, as it may not be caused by diabetes?

 

[lessci]

Make a formal complaint via the practice manager (GP) and PALS (patient liaison service) hospital

 

[DCUKMod]

@TypeZero - In terms of your way forward, in your shoes, I would make a call tomorrow, to the hospital, and ask to speak to the consultant's secretary. She (or he) is the gatekeeper to the consultant. I would explain as you did here that you were expecting to have an appointment in a weeks time, and in your world, the call today was unexpected and caught you unprepared.

Initially, I wouldn't go on the attack, I'd go for a line of something like, "I'm left feeling a bit bewildered and don't understand what was achieved on the appointment, but more importantly living with a condition you don't understand, and of which don't understand the implications has caused enormous stress. I would then ask for a doctor to call me to discuss things.

Coincidentally, I made such a call today, although my call relates to some blood results following a hospital appointment (by phone). I've already had one call back for results, but one test takes about 4 weeks to come back, therefore needs another call. They've been very good.

Whatever you do though, don't stop your insulin. If you end up in DKA, that would be dealt with and you would be discharged for follow up. I would be utterly astonished if they did anything else - particularly a the moment.

That would be my approach - going for taking the secretary along with you on a sympathy basis, rather than her her/him on the defensive for her/his boss.

 

[DCUKMod]

Have you had any joy with your quest, @TypeZero. ?

 

[TypeZero.]

Have you had any joy with your quest, @TypeZero. ?

Hi,

Thanks all for your suggestions. I’ve managed to call the diabetic nurse hotline and told everything, they reassured me I would have follow up appointments and they’ve put my eye condition on the system, I’ve managed to get them to change my insulin by just asking for a different insulin over the phone and now that my eye condition is on the system it can finally get some attention.

Now that I have a diabetic team looking after me I can just relax and find the best way to manage my diabetes. The diabetic team are talking about “getting it right from the start including the best insulins and treatment methods” so I’m quite satisfied with that.

 

[DCUKMod]

Hi,

Thanks all for your suggestions. I’ve managed to call the diabetic nurse hotline and told everything, they reassured me I would have follow up appointments and they’ve put my eye condition on the system, I’ve managed to get them to change my insulin by just asking for a different insulin over the phone and now that my eye condition is on the system it can finally get some attention.

Now that I have a diabetic team looking after me I can just relax and find the best way to manage my diabetes. The diabetic team are talking about “getting it right from the start including the best insulins and treatment methods” so I’m quite satisfied with that.

I'm so glad you have found a way forward you feel comfortable with. Speaking generally, I have usually found it better to negotiate with, and take people along with you on these things. Going head-on can just lead to more frustration, conflict and barriers going up.

The one thing I play in my head, on loop, when I have a bigmedical frustration going on is to remind myself, I'm more likely to need them than they need me, anytime in the future.

I would hate to find myself in a rel bind, medically, and find I'm having to deal with someone I have alienated in the past.

Of course sometimes that requires gargantuan self control.

Fingers crossed your team follow through.