My hospital experience…….

It seemed very strange to be going back to the very place I worked for the first time as a patient. I was due to go to Ward25 for 12.30.

The morning had been occupied by speaking at an event in Leeds for the National Institute for Health Research. Fiona O’Neill had emailed asking if I’d talk about patient involvement. It was their first full staff get together since reorganisation and was at the impressive venue of the Leeds City Museum. I’d never spoken to people where half were sat in a gallery very grand.

Dr Jonathan Sheffield (CEO) was up first and spoke about their vision for the next 5 years. They’d come a long way in the last 5 years but the next 5 were going to be very exciting……..- wish I‘d had more chance to stay and chat and meet everyone but hospital called……..and they had ordered a taxi to be ready to whizz me off to the hospital after my talk. It was lovely to see lots of familiar faces.

Dr Jonathan Sheffield opening the event
Dr Jonathan Sheffield opening the event

Thanks to Fiona kindly sorting out the taxi for me I arrived at the hospital in plenty of time and made my way up to the ward. I was keen to see whether the hospital was any better since I’d left…….. If I hadn’t known the hospital there was plenty of help available to find your way about – very good start.
Once I got to the ward I was shown the waiting area. Once called into the patient area, I went through the obligatory questioning. It seems crazy that all my medical records don’t have my medical history…….I can’t remember when I had a stroke or anything else that might be relevant…..The nurse noted I had Alzheimers and I was impressed at least that she didn’t take my word for it when I said I wasn’t allergic to anything. She came back later with a different set of wrist bands to denote an allergy which she’d found in my notes! Gold star…….😊 but why wasn’t everything else in my notes? – I’m sure I must have gone through everything with the Consultant……

There was water on the table but no one told me where the toilets were –me thinks this should have happened as general housekeeping. There were laminated sheets on the table telling me about the ward but nothing about where anything was located. Orientation is so important to any patient but especially to those with dementia.

Because the nurses were all sat at a table close by I did hear my nurse point me out as someone with dementia to everyone through whispers and sideways glances but I didn’t mind – others might have done..
The doctor then came to explain the procedure and once again asked me if I was allergic to anything – once again I said no………..would have been better if she’d read the notes instead of repeating questions that I’d probably get wrong…………maybe read out my previous answers or have them already recorded in my notes…..The same happened once I was in theatre – the nurse was with me then and answered some for me when I looked to her for help. I realise checks have to be made but to rely on a person with dementia for the right answers seems ludicrous…..

Sarah came to pick me up and was waiting for me as I came out of theatre which was nice. The nurse was very good at explaining everything I needed to know and had marked boxes very clearly and given me written instruction so big brownie point there. I’ve just got to find a way of remembering to take them for the next 2 weeks! More alarms!!

All in all my experience as a patient was good. If I was writing their report I’d probably write :

‘Doing ok but could do a lot better’

The procedure was very painful but don’t think the dementia had anything to do with that – ha! 👀

 

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About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

4 thoughts on “My hospital experience…….

  1. My father in law was in hospital 3 years ago on his 90th birthday. We had explained on his behalf that he had dementia and that as a result he suffered dysphasia. A doctor examined him and said “he doesn’t seem to be speaking”. We were a bit taken aback! The repeated questions that are asked by the health professionals, why do they not read their notes before asking them yet again, this is not appropriate for dementia sufferers and reflects badly on the medical staff who are not responding to the information given. As you point out, a dementia sufferer cannot be assumed to be reliable in their answers.

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  2. Hello Wendy,
    Wanted to let you know that this article will be included in the dementia “Symptom Perspectives” monthly links tonight, October 30, 2015
    https://paper.li/f-1408973778

    I would like to thank you for sharing your lived experience. My hope is that these words and projects can become valuable resources for change in relationships, treatment, and policies.
    Much thanks,
    Tru

    Like

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