"The voice for dementia and your loved ones"

About: Leicester Royal Infirmary / Accident and emergency

(as a relative),

My lovely mum who was diagnosed with vascular dementia 3 years ago, a unassuming little lady who has looked after everyone else all her life. Frail but coping along with my sister and I to keep her in her own home taking the burden off society as best we can we work continually to support her no matter what.

However we find as daughters we are not fighting dementia but the very systems in place to help people. GP, hospitals, where's the support network where is the empathy where is it highlighted in hospitals that our loved ones can't speak for themselves.

We were in A@E last weekend, having waited 6 hours for an ambulance whereby my poor mum laid on a floor at home, unwell and confused. We then endured a 11 hour wait to be assessed and placed on a ward. In this time we were judged as daughters, processed in a corridor, and left. No food or drinks for a frail poorly lady, surrounded by Saturday night drunks and fighters attached to police handcuffs.

I found myself scratching around tables, cubicles nooks and crannies in search of the most simple of things like fluids! Not ft is but mum who was clearly in shock. A lady 85 who manages her garden, washing, ironing, checking, thrown into a world not conducive for dementia no matter how progressed.

After 16 hours of pure hell we found ourselves repeating ourselves each time we were passed on and passed on, despite writing up an A4 essay on arrival. But the most frustrating and distressing and on any interaction with the hospital is explaining that she has dementia.

Why is there not something in place to quickly highlight to staff that mum is confused?  She wears brightly a red wrist band to show she has an allergy.  Why can't our poor loved ones who unfortunately cannot speak for themselves not have a band to highlight dementia? We didn't dare to leave her side even to go to the toilet.

I have no complaints about those poor nurses, it beggars belief how they manage in such chaos.

After such an ordeal mum was admitted, thank god you say, we have help to save our mum, but no 48 hours later sent her home. Staff said they had been phoning me for two days, only to find they have phoned another number! Having not treated her correctly, they then sent her home poorly, yet declared fit.

Days later, we found ourselves back in A&E, after an emergency GP states that he cannot believe my mum is sent home on a medicine known not to work on such conditions, why? Well I intend to find out why.

My mum spent all afternoon and night in A&E going through the same nightmare. No food, drinks, no one to help take to the toilet, we were on our own, I found myself scouting for food for a very poorly little lady who has lost her dignity, and two very tired, distraught and broken daughters desperate for help.

We left our mum in A&E having been told no beds and already being there 6 hours. Heartbreaking leaving that little lady, lost, stressed and in her dementia world. I cried all the way home. I despair that now none will know she has dementia! Nothing on her body to indicate this, no one having time to read notes. I found myself calling at 4:30 to see if she's still alive.

Please someone look at dementia patients in hospital. Look at wrist band, which is a simple thing that could make such a difference.

And please who ever gave our mum a hospital survey to complete, for god sake, look at the notes. Asking her if she has had a good stay when she can't remember 3 mins ago is bloody ridiculous!

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Response from University Hospitals of Leicester NHS Trust

Dear Metzie,

We are really disappointed to hear about your recent experiences in A&E at the Royal Infirmary and are sorry to hear how distressed your mother was.

We would like to look into your concerns, so if you are happy to do so please contact our ESM Complaints Department: ESMComplaintsMailbox@uhl-tr.nhs.uk, with your mother's name, address, date of birth and hospital number, and we'll investigate this further.

Thank you for taking the time to post your comment. Your feedback is important to us and will help us to improve our service.

Kind regards,

Dr Mandar Marathe

Consultant & Interim Head of Service for Emergency Medicine

Leicester's Hospitals