My husband attended Derritford hospital in Plymouth urology clinic today for a complex catheter change. The medical records were on the desk in the procedure room. The records are quite thick as we’ve had two hospital admissions since 1 October.
I was in a chair by the desk and I noticed the first sheet on the file was my handwritten A4 page I wrote out when he was first admitted to hospital … saying… my name is xxxxxxxx and I have Progressive Supernuclear Palsy… PSP. I can’t talk to you or show any expression but I can understand every thing you say etc … it went on to explain about not being able to swallow very well or move as stiff etc etc
I was so impressed as I’d just left it on the hospital table near his bed in early October when we were discharged.
The staff at todays clinic arranged for my husband to have a room to lie down in while he waited for his appointment and the Registrar that dealt with us had a good idea of my husbands limitations. They were so kind and I knew the staff had read the file including my explanation sheet from comments they made.
We also had hospital transport there and back and it was band on time.
I have to say I’m impressed and grateful to every healthcare person we met today as I felt they looked after us well and took notice of his condition. Back home now… husband fast asleep .. result x
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Sun-flowerwearer
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that’s such a comfort, well done sunflower wearer, both for writing a summary and for sharing a positive post. Derriford and Torbay are our hospitals too so I find it a particular reassurance. Best hugs
that’s good to hear! As others have posted, the frustrations of telling health professionals over & over about psp and its impact on sufferers (in my case, my mum) is exhausting! Your note sounds a great idea & did the trick - well done.
My friends mum died of psp (pneumonia) a few years ago & they live in Devon. She said there was a much wider awareness of psp in the local hospital - even leaflets in the reception about it! Where I am in Surrey we’re generally met with blank faces from nurses/ doctors when we mention it. Although finally mum is under the care of a visiting Parkinson’s nurse who is a psp specialist & that is a huge relief.
I think it’s pot luck .. but I have had community team visits from OT and Salt and GP and they all say they have had other patients with PSP before. There are lots of others that have no idea unless you explain it’s a little like MND and then they have a lightbulb moment. X
I do wonder if psp/ cbd is more common then we’re led to believe. Since I’ve become aware, I know a number of people in my network whose relations are also suffering with it. I usually say it’s a ‘cousin’ of Parkinson’s but I think you’re right it’s also very similar to MND so that might be a better summary explanation 😞
That's great Sun-flowerwearer. When my father in law has any hospital/doctors visits he has trouble speaking and hearing. I always type up an update letter of any more falls or changes he has had since the last visit. The Doctors/Consultants always value this information.
Also, more recently, we were trying to get my father in laws eyes tested from Specsavers home service. Unfortunately they cancelled on the morning they were due to attend saying that because he had already had a eye test over 1 year ago he couldn't have another one. We explained again that he has PSP and of course they don't understand. After much frustration and seeing a similar post about vision changes on the PSPA facebook page, my husband rang the local Specsavers and informed them about our predicament and sent them the poster of the PSPA what to look out for changes of eye health. Of course, that branch has never heard of PSP either but after that they did take it on board and managed to get an appointment arranged. I really do think that with us all going through this awful journey that we have to be the voice and inform/educate other medical professionals. I can't believe that PSPA are celebrating 30 years and so little is known about this disease, along with CBD.
It’s very hard to explain how complex PSP is even to consultants and doctors. I think it’s important to stress it is not Parkinson’s or not even mention Parkinson’s as it tends to drop the seriousness of PSP/CBD down quite dramatically as Parkinson’s can be managed and often people with Parkinson’s live very long and reasonable good lives…. Comparatively . I link it to MND as with all the recent publicity people recognise MnD and it has a similar timeline, it’s equally awful and has no cure and no way to stop the progression.
I have just had same with my husband at bishop Auckland hospital he broke a rib on Christmas Day whilst getting him ready for bed he fell. 2 ambulances and fire engine crews to get him down the stairs. 12 days in hosp everyone on the ward knew about PSP so kind and helpful. Very impressed with nhs so far in our area
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