If you could change 1 thing about your health care...

Status
Not open for further replies.
To actually have a DPN in the surgery and not an outdated PN.
Better healthcare for the whole of Scotland where I am based.
To have a place for a blether and to know your not alone in being diabetic T1 of T2 in all areas.
I'm going to look into starting one in my area as there is none.
 
More correct information when I was diagnosed. I also resent being labelled as non-compliant because I refused to immediately go onto medication. I had to be very definite and resolute about getting a chance to try diet and exercise formy disorder. It would also be nice if my success could be acknowledged rather than "that should not have happened and it won't last". Thank goodness for this forum.
 
@happydog do you have the same nurse as me 😉
I refused all medication and have had that was a fluke which really annoyed me as this "diet" is ongoing for life not a fad like she thought cheeky mare.
 
To have my records available at all hospitals. Lots of us attend multiple hospitals and the time wasted getting info from one to another is enormous. it would also save us giving two armfuls of blood - one should be enough.

When you have multiple conditions, you have multiple consultants, none of whom know what the others are doing and when you are 'just' the patient you are often regarded as not understanding what's going on. Yet one consultant tells me that I'm the only expert on my whole condition.

I am lucky enough to have achieved an NHS funded pump and CGM. The pump/cgm deals with the root problem rather than firefighting. Many more people would benefit from this.
 
I would have liked to be given more info at diagnosis. I would have liked to have had a plan for which screenings and treatment I would be getting and any other relevant information.

Personally I felt like it was just your fat,your lazy,your diabetic,you won't change it and that's that. Take some pills and we will see you in three months.

It was this website and people with experience that made me realize diabetes is what you make of it and diagnosis can even be a positive turning point in your life and health.
 
Amity Island said:
Even more ashamed if all I could offer was a meeting in 4 months time!
Click to expand...

If that's all the current state of play in the NHS can manage, then that is what we're stuck with - and that ain't the nurse's fault - so it's sad that any of us should blame her and think SHE should feel ashamed. I think her (and thousands like her) must have the lowest morale it's possible to have - and I'm extremely angry that it's got to this state.

And yet more of us voted Conservative than anything else - again - so we're all stuck with it now with very little chance of seeing it change, any time in the foreseeable future, as far as I can judge.
 
Depends what it is really - I mean if I have a prob I can ring my DSN and she can probably sort it.

If my husband has some prob regarding his prostate cancer outcome, ditto. And because his blood tests have been low and stable for a while, one of his 6 monthly appointments will henceforth be with the Nurse-led 'virtual' clinic - ie over the phone. If his level starts going up again I imagine they will revert to real appointments PDQ with someone higher up the food chain - but as it's a new system the hospital are trying out, none of us know at the moment.
 
Better communication. What's wrong with sending an automated telephone message, email, letter or text saying 'your test results show everything's OK, come back in 6/12/24 months'. The default position in the NHS seems to be 'we'll call you if there's a problem'. This is not the right way to do things. It leads to a lot of stress while your waiting for that non-message, and there's always a worry that a message was not delivered.
 
To stop being told/hearing there is no need for type 2 diabetics using Metformin or diet & exercise alone to control/manage their conditions by self monitoring their blood glucose levels...to stop hearing the standard mantra from NICE...local CCG's..& the NHS that blood glucose testing does not offer a significant advantage in blood sugar control or quality of life for type 2 diabetes patients who are not treated with insulin...or dependant on hypoglycaemic medication...to stop hearing 'No I cannot prescribe you a meter & testing strips' from GP's/DSN's...to stop hearing 'there is no scientific evidence/data to support home testing for type 2 diabetics in the those circumstances'...disappointingly that response was even quoted by DUK in their latest campaign on the provision/restriction of home testing strips/kits...to ask why there has been no effective study undertaken on that issue...or perhaps that's just me being fussy?
 
Stefan Diabetes UK said:
If you could change one thing about your health care, what would it be?
Click to expand...

I would like to be asked "how are you"? Not how's your diabetes, how are your sugars, how's your sight/ feet/kidney function etc. Diabetes is systemic and I'd just like a bit more of an holistic approach to my care.

I can't remember ever being asked how I am in all the decades and it matters enormously when living with diabetes. I realise the appointment time is short and asking about my various damaged parts is important but so is my well being. I'm the one dealing with the daily management and complications whilst trying my best to get in range blood results but I'm not a computer screen of test results and even a nod to that would improve matters so much for me.
 
Flower said:
I would like to be asked "how are you"? Not how's your diabetes, how are your sugars, how's your sight/ feet/kidney function etc. Diabetes is systemic and I'd just like a bit more of an holistic approach to my care.

I can't remember ever being asked how I am in all the decades and it matters enormously when living with diabetes. I realise the appointment time is short and asking about my various damaged parts is important but so is my well being. I'm the one dealing with the daily management and complications whilst trying my best to get in range blood results but I'm not a computer screen of test results and even a nod to that would improve matters so much for me.
Click to expand...
Well said Flower. We are all different but after 51 years I do know a bit. There are some wonderful NHS staff but they are not all. 😉
 
Amity Island said:
I'd just like to see some health care! The current level of care in the UK is totally unacceptable, it really is atrocious. If your lucky, you might be able to have a telephone call with a nurse (not a consultant), I mean, who came up with treatment or care by telephone? It really does begger belief. How can you be cared for by telephone? You need to see the patient, be face to face, be able to see and contact each other, see your notes and diabetic logs with the readings, timings, ketones, basals, corrections, foods, carbs, ratios, over days and weeks to be able to have any chance of getting the right advice. Telephones are ok for trivial conversation, but for a type 1 diabetic in need of possibly urgent answers and help, telephone care is not care at all. If i'd have spent years trainig as a nurse, I'd be ashamed if all I did was offer telephone care! Even more ashamed if all I could offer was a meeting in 4 months time!
Click to expand...

And yet more of us voted Conservative than anything else - again - so we're all stuck with it now with very little chance of seeing it change, any time in the foreseeable future, as far as I can judge.[/QUOTE]

Amity Island said:
Hi Jenny,
I agree with you there, it isn't necesserily their fault they haven't the time to care for people in person, but neither is it the patients. It must be a difficult place to be, when all your training is being put to use on a telephone handset. Heartbreaking really that it's come to this. I never thought I'd ever see "care" being provided over the telephone....
Click to expand...

That's a big part of the problem Amity Island...the assumption that we're stuck with it...we're not...many of us accept it... assuming doctor/nurse knows best...there's nothing we can do about it...some health care professionals work incredibly hard...others do not...standard in any professional body...nurses...doctors...lawyers...engineers and so on...some are better than others...more committed...I make sure I get what I need to keep my diabetes well managed (most of the time well managed)...I have spoken to my GP & the DSN about anything I have been unhappy with...written to them...ensured I have a face to face appointment when I need it...it has been hard work...sometimes exhausting...but it has been productive...I now have a better relationship with my local practice...and GP...more of us need to challenge the shortfall/malaise...call it what you will...in the treatment of diabetes & diabetes care...unless we do that things will not change...if we sit back & say 'oh well there's nothing we can do about it'...again...nothing will change...things are changing albeit slowly...we need to keep up momentum that's all.
 
Grief Flower!! - I have NEVER had a consultant, nurse, GP or even 'vampire' who hasn't asked me how I was as I walked through the door and sat down.

If I got anyone like that - and that person mattered to me (like a new GP or new consultant or DSN that I'm going to need to be empathetic and want to feel I can trust) I'd say 'Hang on a minute, think we've missed something' stand up, walk out and then come straight back in saying 'Good morning Dr Bloggs - pleased to meet you, how are you today?' - and add 'Now, your turn!'

It happened with a student once - and my consultant and nurse were observing - my participation was all arranged but none of us knew he had no bedside manner, so my reaction was ad lib LOL He was OK actually - he was quite warm and approachable and showed promise - just he was so nervous bless him.
 
Amity Island said:
That's a big part of the problem Amity Island...the assumption that we're stuck with it...we're not...many of us accept it... assuming doctor/nurse knows best...there's nothing we can do about it...some health care professionals work incredibly hard...others do not...standard in any professional body...nurses...doctors...lawyers...engineers and so on...some are better than others...more committed...I make sure I get what I need to keep my diabetes well managed (most of the time well managed)...I have spoken to my GP & the DSN about anything I have been unhappy with...written to them...ensured I have a face to face appointment when I need it...it has been hard work...sometimes exhausting...but it has been productive...I now have a better relationship with my local practice...and GP...more of us need to challenge the shortfall/malaise...call it what you will...in the treatment of diabetes & diabetes care...unless we do that things will not change...if we sit back & say 'oh well there's nothing we can do about it'...again...nothing will change...things are changing albeit slowly...we need to keep up momentum that's all.
Click to expand...
Hi Bubbsie, you know, i've never needed any assitance from the diabetes team for over 20 years, only a few weeks back I asked for some help, and all you get is, huffs and puffs down the phone, dangerous advice, terrible attitude, followed by a few quick words of "advice". I've seen my gp about this and he has sent them a letter asking for a second opinion on this. It really shouldn't be like this, why do we have to go into battle at a time when we are at our most vulnerable for services we pay for?[/QUOTE]
 
Last edited:
I'd change the nurse at my new health centre.🙄 LOL. Straight out of a Monty Python sketch. Used needles go in the rubbish, apparently; I don't need to test before driving; and she couldn't understand why I wanted to set the time and date on my 'new' glucose meter (no box, no finger-pricker or lancets, no instructions and it was sticky). :confused:
 
Bloden said:
I'd change the nurse at my new health centre.🙄 LOL. Straight out of a Monty Python sketch. Used needles go in the rubbish, apparently; I don't need to test before driving; and she couldn't understand why I wanted to set the time and date on my 'new' glucose meter (no box, no finger-pricker or lancets, no instructions and it was sticky). :confused:
Click to expand...
Ewwwwwwwwww...it was sticky Bloden...wherever had it been😱😱😱.
 
Bubbsie said:
Hi Bubbsie, you know, i've never needed any assitance from the diabetes team for over 20 years, only a few weeks back I asked for some help, and all you get is, huffs and puffs down the phone, dangerous advice, terrible attitude, followed by a few quick words of "advice". I've seen my gp about this and he has sent them a letter asking for a second opinion on this. It really shouldn't be like this, why do we have to go into battle at a time when we are at our most vulnerable for services we pay for?
Click to expand...
[/QUOTE]
Again...it's because they are used to patients just accepting it AL...I had hardly any contact with the NHS...I had a GP...fortunately I rarely needed to see her...and on occasion I was happy to have a telephone consultation...for minor matters...then suddenly last June became quite ill...a number of health issues...one of which was diabetes...had great treatment for everything but my diabetes...I was appalled by the lack of care...you have diabetes...here's a prescription...off you go...I decided not to accept that...have had real battles with my GP & DSN at my practice...now I have a good working relationship with him...I refuse to see the DSN for any diabetes care...anything I am unhappy with always goes in writing...that way we can all be clear about who said what to whom...you might want to consider putting your concerns in writing...outline what you are unhappy with...detail what you need...if you've managed your condition for 20 years with little input necessary from your health care team...then it's shabby treatment indeed...you need to be persistent...it does take a lot of energy...you have to be 'pig headed'...sometimes the thought of it is daunting...but...once you see a response...it's worth it...I can't give you any advice on the health issues you have...no experience of type 1...shockingly ignorant of it TBH...but...if there's anything else you need help with...let me know.
 
Amity Island said:
Again...it's because they are used to patients just accepting it AL...I had hardly any contact with the NHS...I had a GP...fortunately I rarely needed to see her...and on occasion I was happy to have a telephone consultation...for minor matters...then suddenly last June became quite ill...a number of health issues...one of which was diabetes...had great treatment for everything but my diabetes...I was appalled by the lack of care...you have diabetes...here's a prescription...off you go...I decided not to accept that...have had real battles with my GP & DSN at my practice...now I have a good working relationship with him...I refuse to see the DSN for any diabetes care...anything I am unhappy with always goes in writing...that way we can all be clear about who said what to whom...you might want to consider putting your concerns in writing...outline what you are unhappy with...detail what you need...if you've managed your condition for 20 years with little input necessary from your health care team...then it's shabby treatment indeed...you need to be persistent...it does take a lot of energy...you have to be 'pig headed'...sometimes the thought of it is daunting...but...once you see a response...it's worth it...I can't give you any advice on the health issues you have...no experience of type 1...shockingly ignorant of it TBH...but...if there's anything else you need help with...let me know.
Click to expand...
Hi Bubbsie, Thanks very much for your reply, "nice" to know it's just as bad wherever you live! Thanks. You know I came to this conclusion years ago about people/professions......not such thing as a bad builder or a bad Dr or a bad dentist, it's a bad attitiude thats the problem, it wouldn't matter what these people did for a living, they'd do it badly.[/QUOTE]
Absolutely!
 
pottersusan said:
When you have multiple conditions, you have multiple consultants, none of whom know what the others are doing and when you are 'just' the patient you are often regarded as not understanding what's going on.
Click to expand...
Absolutely - and sometimes you end up playing piggy in the middle, having to explain to one consultant why you can't do what they want because the consultant on your other condition told you it would be harmful for you, and instead of either accepting this or contacting your other consultant about it, they blame you!
 
Status
Not open for further replies.
Back
Top