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NHS - It's no Joke

S

Spirit of Eden

Well-Known Member
Messages
50
Dear Soapbox,

I had a phone consultation with a diabetic nurse today (i'm quite new to mealtime insulin).

I opened the conversation quite jovially, explaining that if I ate the same things at the same time every day and took the same amount of insulin I would have this Diabetes thing sorted out no problem. I noticed she didn't laugh too much and as the conversation panned out this is exactly what she wanted me to do :eh: . Yes and "make sure you eat starchy things with each meal"

Explaining that my "Rock 'n' roll" lifestyle was that I work full time, I often have lunchtime meetings, work late, work early, eat with clients, do sport, but not every day, have 3 kids and all that entails, that surely I would be better off working out how much carb was in the meal and adjusting insulin to suit . Oh dear, I'd clearly said the wrong thing.

There seem to be some lazy fixed assumptions about who patients are. I do accept that a low stress consistent lifestyle would be ideal, but that's not possible and I for one refuse to accept that this condition is not going to redefine me. Can you also please accept that I can do some basic maths to work out doses.

OK - thats it ...

On the flip side, my 17 year old who wants to be a Doctor is spending half term in the Cardiology Dept of our local hospital. He has come home yesterday and today exhausted but buzzing with excitement about how great everybody is and how much he has learned. I quite believe him, my thanks to them.

Todays result from the hospital: Diabetes 0 Cardiology 1
 
Hi Spirit of Eden!

I know exactly what you mean! I seem to have hospital Consultant appointmennts, hospital DSN appointments, blood tests at doctor's surgery, eye checks at doctor's surgey, foot checks at doctor's surgery, flu jabs at doctor's surgery all at different times/dates, requiring me to keep taking time off work. I have tried to gather all the hospital ones up and do them at the same time - and they have been amenable to this. The doctor's surgery on the other hand will not hear of me doing this - they told me 'we only do flu jabs in flu jab clinics', 'we only do HbA1cs in diabetes clinics', 'we only do retinopathy screening in eye clinics'. Aaarghhhh! I am one person and all these things are connected to my diabetes care for pity's sake. They just seem to assume diabetics don't work.

As for carb-counting, they seem very reluctant to let type 1.5s do this. They definitely said I couldn't go on a DAFNE course because I'm not full Type 1. I just got on with it and adjusted my doses by trial and error and help from some of the great Type 1s on this forum. To be fair, as soon as my hospital DSN saw my results and food diary, she gave me some really helpful advice and support. Neither the hospital DSN or the consultant were against me carb-counting, they just didn't suggest it to me! The DSN at the GP surgery is a different kettle of fish altogether though - she thinks it's her job to manage my diabetes - I have to keep reminding her that it is MY role to manage MY diabetes, it is HER role to support me in that :roll:

Smidge
 
Right on smidge you tell them, if it works for you keep right on.

There is such a lack of knowledge and agreement between these so-called HCP's.

They really should all be made to study our forums for help.

Superchip
 
I can't begin to understand how you feel, as I have a brilliant relationship with all of my HCP involved in my care. They listen to me, support me, and decisions (except about Statins - grrr) are all agreed.

I think it's so sad when people can't have a HCT that works with them, but I know it happens, I have read it so many times here. All I can really do is say well said Smidge, and hope that things get better for you soon.
 
I personally couldn't go back to fixed carbs/insulin doses and strict meal-times, I like the flexibility of eating where and what I want........and like you it fits into my lifestyle!

Hope your lad succeeds in becoming a doctor Spirit of Eden :thumbup:
 
smidge said:
Hi Spirit of Eden!

I know exactly what you mean! I seem to have hospital Consultant appointmennts, hospital DSN appointments, blood tests at doctor's surgery, eye checks at doctor's surgey, foot checks at doctor's surgery, flu jabs at doctor's surgery all at different times/dates, requiring me to keep taking time off work. I have tried to gather all the hospital ones up and do them at the same time - and they have been amenable to this. The doctor's surgery on the other hand will not hear of me doing this - they told me 'we only do flu jabs in flu jab clinics', 'we only do HbA1cs in diabetes clinics', 'we only do retinopathy screening in eye clinics'. Aaarghhhh! I am one person and all these things are connected to my diabetes care for pity's sake. They just seem to assume diabetics don't work.

As for carb-counting, they seem very reluctant to let type 1.5s do this. They definitely said I couldn't go on a DAFNE course because I'm not full Type 1. I just got on with it and adjusted my doses by trial and error and help from some of the great Type 1s on this forum. To be fair, as soon as my hospital DSN saw my results and food diary, she gave me some really helpful advice and support. Neither the hospital DSN or the consultant were against me carb-counting, they just didn't suggest it to me! The DSN at the GP surgery is a different kettle of fish altogether though - she thinks it's her job to manage my diabetes - I have to keep reminding her that it is MY role to manage MY diabetes, it is HER role to support me in that :roll:

Smidge
Click to expand...

It's almost a full time job in itself being ill and meeting all the appointments at various different hospitals. I have a gynae problem yet I have to attend TWO hospitals for the same thing - one for the ultrasound and clinic appointments but another for the actual operations I've needed and clinic appointments depending which day the consultant is working.

At BOTH hospitals I made sure the consultant made a note that I have diabetes and anaphylaxis yet when I received my appointment for surgery, it was cancelled and the reappointment was scheduled for late afternoon the following day even though I'd been fasting since early morning.

The nurses said quite loudly that there was nothing in my records about the diabetes or the anaphylaxis yet I'd spent 5 days as an inpatient with angioedema/anaphylaxis only a year ago and I've been seen by a general physician there for breathlessness and chronic fatigue.

In fact they were the ONLY times I'd attended that hospital before the gynae issue and my case notes are about 4 pages thick so there must have been something in my notes and I actually witnessed the consultant writing them! It wasn't like they'd have to read reams before finding something.

I'm a Med Sec myself and know for a fact that diabetics go down to surgery first thing, not last so I had to stamp my feet to make sure that happened otherwise I'd have keeled over having to wait til late afternoon. I hated having to speak out in front of a waiting room full of people and I shouldn't have had to do that either. The fact the nurse said there was nothing in my notes to indicate diabetes or anaphylaxis made me feel like a liar and it was really embarrassing.

So on the part of nurses is it laziness and unwillingness to read notes properly, is it stupidity, or just couldn't-care-lessness because they don't really want to be nurses?

I know that nurses in general do an excellent job, but they DO choose to do that job and they DO get paid for doing it, and whilst I appreciate them I don't think we should feel forever grateful to them any more than we feel grateful to those who stock shelves in ASDA or the cleaner who cleans the public toilets at the local shopping centre - to me, they're ALL vital jobs and ALL important jobs. Let's face it if we didn't have cleaners we'd be in hospital a lot more so perhaps we're not grateful enough to some people and too grateful to others because of their job status.

When I looked after my children as their Mum, it was my job to do that and I chose to do it. I expected them to appreciate me but not to be eternally grateful. When I'm a Med Sec I don't expect patients to be grateful for having me or the NHS, I'm being paid to do my job and I do it well. Yet I'm regularly coming across that attitude from NHS workers and I think it stinks to high heaven.
 
Thanks all, that felt much better out then in

I suppose by definition the folk who come on to forums are more motivated to manage their own condition (well said Smidge). The NHS on the other hand deal with everybody and at the moment thats the group I fall into. Given time I'm sure I will get to know the individuals better and vica versa and trust will build. Understandably though the starting point is where it is, sort of catch all and safe but not totally addressing the problem.

I just need my lad to qualify quickly and specialise in Endocrinology and i'll be sorted.

Until then ....
 
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