On Sunday my husband, who is in a care home, was taken to hospital with suspected Cellulitis. It looked like he might be admitted. Although he has had many trips to A&E because of falls, he has never been admitted before. So I was rushing around trying to find a PSP fact sheet to take in so that the staff would understand his condition better. I couldn’t find anything from the pspa but did find something from the American version, so quickly filled it in and took it with me. The staff found it useful and they did read it.
My question is, do the PSPA have a fact sheet or something to fill in to take with the patient to hospital? It wasn’t until Sunday that I realised how important this was. Luckily my husband wasn’t kept in, but I would like to be better prepared in the future.
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Redjune1
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I don’t think the PSPA have a simple sheet other than the business size cards they give out saying I have Progressive Supranuclear Palsy which effects ….
I wrote out by hand on an A4 sheet and put it in a plastic wallet the same thing in bigger writing but added things like
My name is xxxxx
I have progressive supernuclear Palsy which is a degenerative brain disease and it’s a bit like MND…
I can understand you but I cannot respond quickly and I can’t speak so please let me use my spelling board to answer you
Please ring my wife or speak to my wife for any decisions or information.. phone numbers xxxx
I eat level 5 foods but I need hand feeding please and I need help to drink too
That sort of info
It was left on his hospital table and I know they read it. I also left the PSP booklet for medical professionals on the table too
The fact sheet I wrote is now the first page of his hospital record file
Hope that helps x
And try and be in hospital with him a lot as you need to remind staff all the time and watch what they are doing
Forgetting to offer him a drink was the biggest problem as he couldn’t ask
Hi, I've been similar position when husband had to go to A&E and paramedics asked me for info and overnight bag in case of admission. I had ready a My Care Passport for my husband. Each hospital trust have one and you can find on their website, fill in and print to have ready it covers much key info, who I am, key contacts, medical professionals involved in care, medications, sections to cover such as eating communication etc. I have additionally put an emergency bag together with key toiletries and pj's ready to add medication, glasses phone etc and picked up and have on my to do list Sunflower wearers suggestion of a front key info sheet as I think this is most likely to be read especially in a busy A&E but said that all the staff involved in my husbands care did take time to ask about psp. I suppose a key thing is to remember to keep such info updated as things change
This post and replies have been so helpful so thank you to you all. My husband has PSP and I worry about if he is ever admitted to hospital. I now have the advice and information I need to 'arm' myself with. it is surprising how many health professionals have never heard of PSP even though it is a rare condition. This is priority on my list of jobs today. Thank you.
The PSPA Asociacion has published a document entitled "A guide to PSP & CBD for General Practitioners" that can be very useful for your phisicyan. If you are interested in this document, you can request it by sending an email to:
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