"No concern about what's important to me"

About: Western General Hospital / General Medicine

(as the patient),

I have had type 1 diabetes for 35 years. Same HbA1c since I can recall. Always good control. Same weight since I finished school, always active and lean build. So, because of that, I no longer let the NHS weigh me or test my HbA1c because it's always the same. I have no problems with my control, and it's not what I'm interested in measuring.

My health care team are consistently openly frustrated and annoyed about this. One time a nurse would not let me see a doctor unless I let her take my blood. The doctor was so annoyed that I felt uncomfortable so to give myself some peace from them, I agreed to test. They took my blood and evidently lost the results so that a was pointless.

I go and see them again, they are annoyed again, so in an attempt to get them to stop getting annoyed at the irrelevant and to focus on why I was actually there (address kidney function issues) I agreed again to give blood, which I did, and again they lost the results. Now they are blaming me, claiming that I never actually gave blood and that my refusal to give blood is a problem.

I've become better at ignoring all of their patronising and offensive behaviours and I write down what I need out of each appointment and stay focussed on getting that addressed. I've managed to do that, but each appointment is made so awful because the health care providers show no concern about what's important to me.

I said to my Dr that I need help to maintain good kidney function. He said he couldn't do anything for me because I refuse to do anything (he meant I don't give my blood or get weighed). I said to him that I do a lot: firstly, I'm here! Secondly, I reminded him the strict diet changes I've made to reduce protein in my diet, thirdly I reminded him that I've consistently taken the non-pharmaceutical treatments that were indicated to help kidney function, and finally I reminded him that although I won't consent to some blood tests I have done all the blood tests for kidney function and they've shown that the care I'm taking is working and my kidney function is improving. I was calm with him and said to him to please stay focussed on helping me sort my kidneys out but I left feeling defeated.

I hate seeing people who are paid to do things to my diabetes.

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Response from Customer Relations and Feedback Team, NHS Lothian

Dear Jaketakescare

Firstly I would like to apologise for the delay in responding and I am extremely sorry to read about your experience.

You clearly have had discussions with the nurses and doctors in the clinic regarding your concerns. However, if you feel the Customer Relations and Feedback Team can contact the Clinical Management Team with your concerns then please contact us on 0131 536 3370, email craft@nhslothian.scot.nhs.uk or write to Waverley Gate, 2-4 Waterloo Place, Edinburgh, EH1 3EG.

Thank you for taking the time to provide your feedback and I will ensure this is brought to the attention of the Clinical Management Team.