Poor Support From Diabetic Specialists

[Jjoshh]

Hello!

I was diagnosed with Type 1 diabetes in October 2014 and since my diagnosis I feel I have had very little and inadequate support to manage my condition.

Over the last 3-4 years I have self taught myself everything to do with managing my condition and carb counting etc but I'm not 100% I'm doing it right. My bloods are all over the place.

I have had the same diabetic nurse (who I see every 3 months) and my consultant (who I see every 12) but I don't feel like they listen to my concerns...

Over the last 6 months I have been really struggling and deflated about dealing with this on my own for so long. It feels like such a burden and it's making me care less about my bloods. (I said this to my nurse today but I wasn't taken seriously).

Do others feel like they're not getting enough help? Who do I raise my concerns with?

Any help would be appreciated!

Cheers
Josh

 

[leahkian]

Josh there are a lot of diabetics who are just like you, with diabetes rising and not enough nurses and doctors to cope with the demand. I went to the same diabetes center for nearly 30 years but the last 5 were not good, i was rushed in to see a doctor 5 mins of him saying do this and do that. I got a insulin pump and they could not get my control right, they even took me in to hospital to see if they could sort it but i told them that when i go home it will be different. I got that sick i told them to take the pump back, at the time my renal function was 20% so i new that i was nearing going on the transplant list. So i went on line to look at the place that any transplant would be done and also looked at the diabetic consultants who would be part of the team. I found one and asked my GP to refer me to see the consultant and 2 weeks later i went to see him, the hospital i was under sent him a A4 sheet of paper even though i had been diabetic for 28 years. I started talking to him and it felt for the first time in years that he was listening to me, i had been in a hour and he said come back next week. When i got home my parents asked how it went and i had a smile on my face my mother was in tears as she had not seen me smile for such a long time. When i went the next week he had seen all my notes and said lets get this pump sorted but this was not him telling me what to do it was both of us trying to get it right. On my 4th visit we had the pump under control so he asked me did i want to go back to my local hospital i told him no so i went to see him after that, he gave me hope and pushed for a kidney and pancreas transplant for me. When i went to see him once he told me that my old hospital had said i was a difficult person. I have to travel 25 mins to see him where my local hospital was 5 mins away, why not look at other hospitals or tell the nurse that you need more help.

 

[Barbara_morgan]

Hi jjoshh I have recently been diagnosed with type 2 in July this year you are not alone in feeling the professionals die eticnurses advisers are not listening to you I feel the same they don’t want to answer any questions
And can not be bothered listening to any. Thing. You say I found it best just to nod and smile at them and make like you. Agree with them then I go on line for any advice or help it may seem mean of mto waste their time but it’s better than arguing with them good luck jjobhh don’t give up on your self you will learn a lot in time .babs. Lol.

 

[Diakat]

Hi @Jjoshh
Unfortunately many feel like this, some clinics are better than others. You could ask to see a different nurse as I have found some to be more helpful than others.
For carb counting, take a look here
https://www.bertieonline.org.uk/
Also take a look at the Type 1 stars are us thread on this site, as well as random chat there are comments on real life numbers and some tips for managing them.

 

[DCUKMod]

@Jjoshh - You could request a change of clinic, but to be truthful, there's no real way of knowing if somewhere else would be any different. Of course, we can go by others' recommendations, but then I feel sure we all want and/or need slightly different things from those tasked with supporting us. Diabetes is such a personal thing.

To be honest, next you see your Nurse, or Consultant if he's next, it could be worthwhile just telling them exactly what you've told us, and explain you are fearful of burnout. (There's a long thread on diabetes burnout on the forum is you want to do some reading.)

Do you feel it's the "what to do" that you're missing out on or the emtional/psychological support, which is so important to us all in these things?

Before you go to your next meeting, it could be very worthwhile having a decent think about things and try to clarify in your own mind what it is you feel you lack, so that should your Nurse/Doc ask, "Well, what is it you would like us to do or to provide?" that you have at least some pointers for them. They may feel they're doing their best for you, but the steer you could perhaps give them might just help.

Diabetes can be a relentless condition, never mind when and if you you also feel its a solo journey. Good luck with it all.

 

[JMK1954]

I have also had the experience of seeing the same doctor at a hospital clinic for about 5 years, but finding that she didn't listen to what I said, and repeatedly gave me advice which made things worse, not better if I followed it. You can contact your hospital's PALS service and ask not to see your current doctor again, if you are sure that this is what you want. Are you sure that your current doctor understands what you are saying ? Could that be the problem ? What sort of concerns are you having ?
I have been type 1 for 54 years and I know that I have found doctors and nurses who varied dramatically in their usefulness to me. If they are not useful, you need to change them.

 

[kitedoc]

Thank you @JMK1954,
With a lesser time on insulin of 51 years, I agree with your experience.
I am reminded of a Chinese word I saw, written in original form, and its interpretation was Ears, Eyes, Heart and Undivided Attention - and the word - To Listen.
I read a study many years ago and apologise for not recalling the reference, however the main point it made was:
a doctor, by not interrupting the patient's speaking in the initial 30 to 60 seconds of the doctor-patient consultation, gained much better rapport and information, and the patient was better satisfied than if the doctor cut the patient off in less time.
Over the years I have found that a pretty good yardstick (um, meter rule) for the calibre of a health professional.
The other 'plus' behaviours were:
- a humility couched in professional behaviour and self-humour, that is, a willingness to admit that they were human, did not take themselves too seriously but stood by their standards of behaviour and respect ;
- had a good sense of humour and applied it expeditiously
- ability to paraphrase what I had said, in order to check that they understood what I was trying to impart;
- an ability to accept and tolerate uncertainty, sometimes a diagnosis seemed straight-forward but they were prepared to question and be flexible if things did not make sense or I felt they did not
- explained how they had reached a diagnosis and what they thought were the best treatment options
- were prepared to adapt explanation and education into a form, language which I could relate to
- were wholistic in their appreciation of how emotions, belief systems, relationships impact on a person's sensibilities and health
I appreciate no-one is perfect and that with the pressures of time etc each consultation etc may not be fully satisfactory but:
I would give a doctor 3 to 5 visits to see if they would shape up to my expectations - It was not a matter of whether the doctor or I was in the 'wrong', it was a matter of, would the relationship work?
Of course I did not always have the option of 'firing' a doctor (Ha! or him/her 'firing' me). I learnt to endure a 'bad match', and try to actually ask challenging questions as a means to 'draw them out', not to be smart. I would describe how a hypo felt to me, for their information, as I still find most doctors do not really know beyond what a textbook says.
I 'fought' to find a level playing field of some sort, a level of mutual respect no matter how difficult it was to do but found that if things were still unsatisfactory, beyond 3, visits maybe 5 - I would object.
I now have a great GP, endocrinologist and other specialists but through paying in the private Aussie health system.
I know that is not in every person's ability to do.
I wish every patient could:
give a health professional a little room to prove (or disprove) themselves.,
assert their right to be listened to, have a support person present if that would help
give notes to their doctor/dsn of records (like BSLS, CGM readings etc) and insist they are incorporated in their health record,
even request to read their own health record and write in it ( the right to do so may need clarification but a refusal to allow such seems like an insult and denial of patient rights to my mind - If a doctor/nurse has not recorded what you have told them should you not have a right to question that and write in the record?)
maintain their dignity, use their rights wisely (including complaint processes where appropriate, support groups), this website's knowledge base of respondents.

 

[Robinredbreast]

Hello!

I was diagnosed with Type 1 diabetes in October 2014 and since my diagnosis I feel I have had very little and inadequate support to manage my condition.

Over the last 3-4 years I have self taught myself everything to do with managing my condition and carb counting etc but I'm not 100% I'm doing it right. My bloods are all over the place.

I have had the same diabetic nurse (who I see every 3 months) and my consultant (who I see every 12) but I don't feel like they listen to my concerns...

Over the last 6 months I have been really struggling and deflated about dealing with this on my own for so long. It feels like such a burden and it's making me care less about my bloods. (I said this to my nurse today but I wasn't taken seriously).

Do others feel like they're not getting enough help? Who do I raise my concerns with?

Any help would be appreciated!

Cheers
Josh

Hi Josh, sorry to read you are finding it rough going. Diabetes consultants tend to put us all in the same box, but we are all not the same in out management. Also, be perfectly honest and tell them how you are feeling, write things down that you would like to say, be assertive, but calm and definitely in control. Ask questions, try to get proper answer's, if we don't tell medical professional's how we feel, how they or the diabetes is affecting us, tell them they are listening to you if we don't, then things will never change. We are individual's, with individual needs!

Take care, I hope things will get better for you.

 

[rosco 2]

kitedoc, I agree with every word of your post. Josh, what can i say? Amongst the professions there are people who are just not up to listening, assume they have nothing to learn and regard a patient who requires more information and support as a pest or a threat to their doctor status. Sadly that is a fact. I regard each of us as the guardian of their own health but I recognise that there are individuals who do not have the capacity or capability to take on the professions allied to medicine. Good on you for ensuring you get what you need.

 

[Juicyj]

Hello @Jjoshh Sorry to hear about your experience, it's not very common to hear this but it is disappointing to hear when another t1 is not getting the support they need.

Firstly i'm going to say well done to you for taking the bull by the horns and managing this yourself and getting clued up, however there is only so much you can do and then you need the back up of your team to help with education or insulin advice.

My advice is to get you to contact your team again and ask for another appointment to ask them again for more support, write stuff down. You also need to ask them about getting onto the Dose Adjustment for Normal Eating course which is an excellent resource for type 1 diabetics, the course reviews your insulin doses and recommendations during the course can be made which will improve your management, you would also need to complete this course if you wish to be considered for an insulin pump at a later date too, so it does help to get onto it. BERTIE is a good online resource also as mentioned earlier.

I have also learnt over the years that it's the loudest that get heard first when struggling, so don't give up or give in, just shout extra loud and make sure your team hear you, best wishes J