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Type 1 Need Some Advice?!?!

A

Alex_B

Well-Known Member
Messages
168
Type of diabetes
Type 1
Treatment type
Insulin
I went to the hospital on Tuesday 7th August, mainly A&E. To say the least, they made my fear of hospitals 10x worse since my diagnosis and week-stay in hospital 2 1/2 years ago.

Firstly, I had to wait 4 hours to see a "GP" (someone who clearly did not know what they were talking about), they tested my ketones in urine, which turned out bad, but not blood ketones. They told everyone I had DKA, distressed me to the point my mental health came into play and I was harming myself. They panicked all the doctors and nurses, for no reason whatsoever, because when they checked the ketones in my blood 3-4 minutes after the urine example, it was 0.5. I heard them in the back saying "they don't have any signs of DKA".

Not one doctor or nurse, tried to calm me down, tried to de-distress me. Which could of easily been done with talking to me about my hobbies and stuff, which is what 'experienced' people of that profession have done before and has worked. They also told the nurse infront of all the people in A&E that I had "mental health issues and was really upset" so loudly that everyone turned to look at me. This has broken the confidentiality agreement that they have in place. They did not even go into another room to say it. (Which made me become even more distressed). They lied to me and told me that I could go for a cigarette once they have done my blood and got me settled into a room. (They also put me in a room, isolated me from everyone else because I was distressed, which I do not think was right).

I don't want to have to make a complaint, but I want some advice on what I should do before I make that decision.. Do I have a claim to make or not? I've emailed my diabetes nurse, which she will probably take their side.

I am now refusing to go to the hospital or doctors because they have made my fear a lot worse. I have an appointment 13th August and 16th August, which I am scared that I will have anxiety attacks the night before and the morning before I go. Because of this I will probably never step into a hospital or doctors surgery ever again after these dates, because of what has happened!
 
Hi Alex_B, Unfortunately the nightmare A&Es are a feature of most countries, Australia, UK etc. BUT, one toad does not make a plague. Over the 51 years of being on insulin I have seen quite a range of A&Es and what strikes me is:
Tone and demeanour of A&E staff depends on who is overall head of the Unit and who is the senior staff in charge of that shift. -
a good leader will keep his/her staff in line, ensure respectful regard for patients and that protocols for management are followed (e.g. check for urinary ketones and if positive, check blood for ketones and glucose AND then for blood acidity before considering a DKA diagnosis). And busyness or whatever is no excuse for breaching confidentiality.
You have every right to request to talk to head of Unit, or senior in charge of the shift about your concerns whilst in A&E - ( not to a poor chump who has been delegated to do 'damage control") - also delaying tactics may occur ( he/she is too busy with emergencies etc) but given the length of a shift and how much time one spends in an A&E that is not an excuse that will suffice for long. (And everyone needs a meal break or toilet break after all !!)
You have every right to request to see contemporaneously what is recorded in your health record AND to request to write in those notes - a medico-legal mantra I have heard taught to staff is "If it is not written down, it did not happen". That leaves the patient is a very disadvantaged position as far as the 'truth' is concerned. Do not let the 'we only have electronic records with access for staff only' malarky deter you. As in the point above, if a written request by you in the notes to see the Head of Unit or senior in charge is in the notes it cannot be denied or lied about that such a request was never made.
You have every right to lodge a complaint about the way you were treated - the problem is often it comes down to your word against their's, but being able to write in the notes at the time, or having a support person there to witness what happened, what was said etc helps you and may keep staff behaviour better in line. Whether you can legally record what was said on a mobile phone etc without their permission is a legal issue which may vary from country to country, State to State etc. And often in the complaint process you may be offered the opportunity to provide suggestions of how things might be improved.
You have a right to later view the clinical record of your A&E visit and any summary which may have been sent to your GP and to request an alteration to those records - whilst that may not always provide the correction you desire, a record of your protest will need to be recorded, along with what you wish corrected. That can be referred to in future if need be.
Please consider going to your GP and DSN with a list of your concerns about what happened. You need people to understand your side of the story and any GP/DSN with a sense of fairness, openness and concern for his/her patients will understand that A&E departments are not perfect and that any patient might react as you did in similar circumstances. You need your GP and DSN on side in this. Thinking you will not be supported is understandable but defeatist - you need them.
In the future you may not always be able to decline being sent to A&E - you may be unconscious or your life is in danger. Better to find ways to prevent a similar episode occurring, whether that is by having an alternative A&E to go to etc, or ironing out the problems with appropriate help, counselling etc. E.G. a letter with summary of your health conditions, your concerns with A&E behaviour addressed by your GP to head of Unit and endorsed in your clinical record may make for a better experience.
Best Wishes for a way forward !
 
Hi @Alex_B Sounds like you went through an assault course on that trip, how did you end up there ?

I know you have a dislike for hospitals and understandably, they are are intimidating places. Sadly the doctors and nurses are not specialists and as you will find your knowledge is very often better than theirs, they practice general medicine which covers many areas and the treatment of type 1 is a specialist area which can only be reviewed with any confidence by a specialist consultant, so needless to say I am not surprised you had this experience.

Please do not let this experience put your off seeing a specialist Diabetes consultant or nurse though, you need support so seeing the right people is important for your well being.
 
@Juicyj It's more of the fact that 1) Said I had mental health issues infront of all the people in A&E, that's a breach of the confidentiality, 2) Told me I had DKA, distressed me further and then told I had no signs of DKA. Got an email back from my diabetes nurse and surprise surprise shes sticking up for them :( Thought these people were suppose to be on my side, I don't think I will be returning to the doctors surgery or hospital for a very long time after the appointments I have next week!
 
I agree that saying this in public was not professional and stating you had DKA was incorrect, my point is that you cannot let episodes like this affect your care so saying you won’t visit the doctor or hospital is not going to serve you any favours at all. Put yourself first hun and let this go, your health is much more important.

Seeing a specialist Diabetes consultant is your priority, I don’t take any notice of what i’m told by anyone other than my diabetic nurse or my consultant regarding my diabetes, i’ve learnt over the 6 years i’ve had this that they are the only people I trust and I don’t trust anyone else, they are my go to team when I need anything t1 related.
 
It is worth writing to PALS about this, if only to try and prevent this from happening to you or someone else in the future. The best approach is to avoid criticisms or insults and write down the facts of exactly what happened, in chronological order, explaining how you felt at each stage.
 
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