in hospital a week and staff nurse did not know my mum had psp or what it was

Mum had been in hospital over a week when I eventually spoke to a staff nurse, having a lovely conversation about why they had done scans on mum because they wanted to find out why she keeps falling. I said it is because of her psp, and said that I had spoken to her Parkinson's nurse also that day. so she said " oh your mum has Parkinson " I said no psp and went on to explain it in depth to her, she had never heard of this and was going to check my mums notes. What a joke, surely they should have known what she has within the first day of her being admitted, flabbergasted.

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  • Unbelievable! Unfortunately it's not. Nothing surprises me any more. How can professionals decide what is best for her if they don't all know what is wrong ? I hope it is soon mutually decided as to what happens when she leaves hospital.

  • Thanks,she has gone back to her home with carers twice a day until they can arrange 4 times a day, personally think she would be better in a care home but she is very unwilling at the moment , take it day by day to see how she gets on at home

  • That is just so awful, just so upsetting on top of everything ️xx

  • Sadly not surprised. Every time my friend goes into hospital or changes wards etc we have to go through the same old story of explaining everything to everyone. There's not a lot of joined up communication!

  • O feel for you. I'm my case my mum got admitted in hospital with psp with a chest infection. She had lost her speech by then and could not communicate. She did not revieve the best care she was nil by mouth and was not fed for a whole day because the nurses were to busy,she was left on a wet mattress for a few hours, I know this because I use to look at her file everytime I was there, eventually I was to scared to leave her and was there mostly all the time. When your love ones are in hospital I think you have to fight for their care. Inform them how you feel and make sure you note everything down. I will pray for your mu. Xx

  • This is not uncommon. Many caregivers run into the same thing. Our local Hospice workers didn't have a clue about PSP until I supplied them with information. They then held a meeting at Hospice offices to go over PSP with all the Hospice workers. Both PSPA in the UK and CurePSP in the USA have excellent information designed just for teaching medical professionals about PSP. I suggest every caregiver pick up this information and pass it along. Jimbo

  • Yeah think I will print lots of stuff off , keep it at hand, etc. thanks

  • margaret 'M HAVNG THE SAME PROBLEM W/MY PCP I WANT HER TO REFER E TO PSP NEUROLOGIST. SHE WANTS T O KOWWHYI DON'T WANT TO SEE MY REGULAR DR, I HAVE TRIED TO TE.LL TELL HER THAT I NEED A DR. THAT WILL BE ABLE TO HELP WITH THE PATIENTS FAMILIES AND C G'S . SO THEY UNDERSTAND WHAT A PSP PATIENT HAS TO IDEAL WITH .MY DAUGHTER IS IN DENIALE. NO MATTER WHAT I SAY TO HER SHE TELLS ME THAT I''M TOO FUSSY. I'M READY TO RUN AWAY FROM HOME BUT ICAN'T EVAN RUN. GOOD LUCK GENAI

  • My mum has a Parkinson's nurse under her wing, as this is similar to Parkinson's ( a little) they have more knowledge of psp, try and see if your gp can sort one out for you via the hospital xx good luck

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