I Want a Lawyer for my Diabetes

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

So English endocrinologist Partha Kar asked on twitter if self-administration of insulin is always appropriate.

It got me thinking, when ISN’T it appropriate? It seems to me that when you’re diagnosed with diabetes you get some fairly rudimentary education and then you’re sent home to calculate dosage and administer a potentially lethal drug.  Multiple times a day, day-in-day out we do this.

So where do health care professionals get off declaring us incompetent to do this and denying us our basic rights when we are inpatients in hospital?Sure, if you’re unconscious or otherwise incapacitated then you will need help-but self-management should be the default position.  Seems like common sense but anecdotes abound of patients being coerced out of their pumps, being denied insulin despite extremely high sugar levels and all sorts of other horrors.  It’s not just anecdotes either, studies of diabetes management  of diabetic inpatients are alarming.

The National Diabetes Inpatient Audit (NaDIA) found that, in a five-day period, more than 60 people with diabetes developed diabetic ketoacidosis (DKA), which results from a severe shortage of insulin. … Even a single case of DKA developing in hospital is unacceptable because it suggests that insulin has been withheld from that person for some time. The fact that this is regularly happening raises serious questions about the ability of hospitals to provide even the most basic level of diabetes care….

The report also found that the majority of hospitals in the survey made medication errors, with more than a third of inpatients experiencing a medication error during the period of the study.”  A good summary of the findings can be found here. UK National Diabetes Inpatient Audit

Death trap for diabetics?
Death trap for diabetics?

This is crazy, amongst people with diabetes the word is to have a secret stash of insulin and food with you in hospital so that you can save yourself from the incompetency. If diabetes professionals worried half as much about the incompetency of their generalist colleagues as they did about wrestling control over insulin and food from people with diabetes, hospitals might be a safer place.

I’d like some legal advice, what are my rights here? Surely, if I want to I should be able to self-manage my diabetes UNLESS I am legally declared incompetent.  So if I want my pump during surgery then I shouldn’t have to fight for it.  I and 1000s of other people with diabetes shouldn’t have to fear being killed by medical incompetency or negligence.

My thoughts on this are still forming but why can’t we have something like a diabetes care directive, that details our total daily dose, correction logarithms and carb ratio for use if we are unconscious or declared legally incompetent by the Public Trustee. Failing this our right to manage our diabetes should be respected.

What do you think? What has been your experience?

10 thoughts on “I Want a Lawyer for my Diabetes

  1. Good topic 🙂 I’ve only been in hospital twice (for longer than just the day) with diabetes. Once when I was diagnosed & once with DKA & both times I was a child and quite ignorant about what my exact needs were. However, now, years later, I couldn’t imagine being anywhere (including in the ‘care’ of hospital), allowing or trusting anyone else to manage my diabetes, including during a surgery. It’s your body and your life. And regardless of their financial or insurance related risks, it is your life they could potentially be playing with and like you mentioned, they don’t always get it right. Who could know you better than you?…

    In my mind, the only times self-administration would perhaps not be appropriate, would be related to young age or a lack of consciousness and/or mental awareness / ability.

  2. Mine was locked in a drawer and I was given jelly and ice cream and my levels were sky high. I was pretty upset and couldn’t get anywhere with the ward. I ended up calling the hospital from my bed and getting the hospital dietician in my room. She came nearly every day for a week.

    Then I got my pump. I said no, I’m not taking it off. Once I proved I had good control they left me alone. Whenever the nurse walked in I’dhave my sugar levels ready to tell them. They loved it. One less job of hauling out the glucose machine. Of course that’s if you’re well enough to assist yourself.

    Not many people in hospitals know how to use a pump (in my experience) so they’re happy to leave you alone with it.

    Most people don’t want to cause trouble but I think you could end up extending your stay if your sugars are out of control. I’m not rude, just assertive and persistent.

    Kim

    1. I agree, it seems people in hospitals are scared of the pump. I was asked by a resident I think it was “Why did they put you on that?”-so much wrong with that question. I just don’t think it should be necessary to go into battle when you’re in hospital and there are many situations where it just might not be possible.

  3. You are so right! My 15 year old son has t1 and we have had two non diabetes related emergency hospital visits recently. The first one required an operation and we had to really stand our ground to avoid a full dose of fast acting insulin being given on an empty stomach by the anaesthetist. We have a great educator who is keen to work with anyone in the hospital in these situations but they don’t call her.
    She did follow up with staff involved and on our second visit, we got an apology and I was told the at we were in charge and they would take the lead from us in the management of his diabetes. Big improvement, yes, but could have been avoided had there been a database in place.
    After the first op,by a weird coincidence, we were in kids’ ward next to a mum of a tiny tot with typeI with a broken arm who was exhausted from standing her ground over the management of her child’s diabetes. Emergency hospital visits are stressful enough without adding this on. It’s just not good enough!

    1. Some medical doctors have no idea!! I have been diabetic for over 20 years and in the last couple of years I have had a couple of episodes of DKA, one requiring an insulin infusion. I said from the start I will do my own blood sugars and ketones checks and my blood sugar machine and insulin pumps stays with me until I get reconnect to it. The nurses where fine with that. You have to be an adovocate for yourself. Thank god there is an amazing diabetes educator at the hospital and saw me at these times which helped and reassured me.
      My career I am a nurse on a medical ward anytime that we get a or with type one I aim to allow them to manger it, if they can. Keeps them independent with the management of the disease. The hardest bit is getting the doctors to listen to there needs and requirements!!!!

    2. At least you got a response but it shouldn’t have been necessary. I really feel that D educators at least, if not endos should have to review all inpatients who are on insulin. This just isn’t good enough the way things are at the moment.

  4. Dare I say it but most hospitals and HCPs deal with T2D (90% of all cases of diabetes). T1D is in the minority (10%) so we are hardly ever in hospital and when we are, the staff are typically unused to dealing with T1D. Education is necessary but I also blame the media whose constant lumping of T2D in with T1D, has over the years affected everyone including the average health professional, especially those who are not dealing with T1D on a daily basis.

    1. Yes,I agree Gina-all adults must have type 2 right? I don’t blame the media for the misinformation and lack of distinction between type 1 and 2, but I do blame crap health campaigns from organisations that should know better and the stigmatising of diabetes.

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