"Poor care"

Ward 19a St John’s Livingston

I was recently admitted to the ENT ward at St John’s with concerns that I still have not had answers to. This concerns me as I don’t ultimately know what caused my initial symptoms which led to a cascade of traumatic events.

My concerns are as follows -

- I was prescribed IV antibiotics. I took a reaction to my 2nd dose of medication, which was given to me over 30 minutes (the first dose over 3 hours) I have since learned this dose was given too quickly and this is why I had the reaction which was quite painful. It took 1 hour to provide an antihistamine for relief - so glad it wasn’t anaphylaxis and just skin flush, burn, urticaria and itchy throat. NHS Lothian's IV drug administration states this medication should not have been given over 30 minutes. This greatly concerns me.

- There was a delay of a whole shift to administer a medication I was told would greatly help me. However when I did receive this on the night shift, this medication was given too quickly again over 30 minutes when it should be 1 hour minimum with IV fluid support due to the nature of the medication. I questioned this and was dismissed and obviously did not have access to the IV protocol but this medication made me very sick, I was vomiting profusely.

I was denied IV fluids despite vomiting and feeling unwell and not drinking, the doctor dismissed my concerns despite the medication being given too quickly and me feeling unwell. This made me feel unsafe. Again, NHS Lothian IV drug administration states this medication should not be given quicker than 1 hour, so to receive it over 30 minutes and be berated by the nurse for questioning them worries me greatly.

It also states to avoid any concerns give over slow infusion with adequate hydration - I explained I felt dehydrated and wasn’t drinking therefore I don’t deem this to be adequate. No urinalysis was performed or subsequent U&E therefore I am unsure how doctor could be so certain in their dismissal that I did not require further fluids. The staff were aware I have a healthcare background which I feel consistently went against me, however I would always listen to my patients' concerns, especially knowing they also are trained in IV fluid and drug administration. I feel my concerns were invalidated to my detriment.

- A member of staff on night shift was not friendly and made me feel on edge, questioning my symptoms and why I was there. Another on a nightshift was frustrated with me asking about my medications - as an adult I am entitled to be aware of what is happening to me and why.

- I went home on medications and took a severe medicine reaction to one of the medicines (I do not know which). This resulted in severe skin irritation and hives. I was told to continue the medication and call back, which I did as it was worsening. I was then told to cease all meds but take 2 antihistamines 4x per day for one and 2x per day for another. I was given the direct line to the ward and told to call back if worsening symptoms occurred.

I did so the next day and was berated by a doctor that this wasn’t protocol and tried to explain I was given that care pathway to follow. I then spoke to another doctor and was told I really shouldn’t have called this way but I had been given special treatment. I was told it was fine to stop all the previous meds I had went home on as I probably didn’t need to be on them, which felt incredibly frustrating given the horrific reactions I had encountered.

I also was given medications that were not compatible for breastfeeding and thus my breastfeeding journey is over. I am incredibly unhappy that medications I have since been told I probably didn’t need have led me to stop a successful feeding journey - and I feel this needs fed back to your infant feeding team and St John’s. My symptoms continued to worsen to which I attended out of hours at the Royal. Over the course of the next few days I experienced severe symptoms which led to angioedema closing my eyes.

I would like to say that one HCA I encountered was so lovely, as was a domestic. Some of the nurses were mindful of my concerns and kind. They made my situation a bit better.