New member at a loss


#1

Ok I’ve never posted before but honestly I’m now at a loss as to what go do next. My mom was diagnosed with parkinsons 11 years ago and until 12 months ago was fine, meds kept tremors under control and no other major symptoms. Since the beginning of the year we now have freezing episodes, constipation, constant UTI’s, speech slurring, blurry vision, gastric reflux, dehydration from swallowing issues. She lives on her own, I live 40 miles away, don’t drive and have 5 kids. She has a carer first thing and last thing, but this week she has called the paramedics twice, her vitals are fine but she can’t get out of bed, can barely lift her head and is complaining of burning insides. Her gp isn’t great, the parkinsons consultant told me it was a gp problem and wouldn’t move her appointment from January and her Parkinsons nurses has an answering service I’ve called but apparently it can take them 7 days to get back to you. Any suggestions from anyone at this point I’d be very grateful x


#2

Hi Nicky,

Really sorry to hear this, please do give our helpline a call free on 0808 800 0303 and our advisers will do their best to help.

Best wishes,

Tom


#3

That is tough Nicky. Best of luck with dealing with the medics. Some of them are absolutely amazing and some of them are rubbish. I always praise and thank those who show they are caring people and who do their best, and I make life hard for anyone who lets my mum down. If I was in your situation I’d complain loudly about the quality of care your mum is getting and go above their heads to try and force the NHS to take responsibility. Your mum has rights and they have a duty to care for her. best wishes, Colin


#4

Hi there if you have no idea who to turn to try your local community health Council it’s free and they can access your mams records I used mine when my late dad broke his hip and they kept postponing surgery one call and they operated in a few hours good luck your mam deserves to be treated like a human being not a number
Pete


#5

Nicky, I agree with all the replies you have received. This is really not accceptable, and you may need to do a bit of shouting at someone. Don’t lose heart. i know it will be difficult, but your Mum deserves better traatment and she needs you to agitate for it.

Good luck and my very best wishes.

Audrey - (Knine)


#6

your mum is very lucky to have you


#7

thank the gods she doesnt need to deal with DWP pressures too


#8

I too had the same problem before my db They scanned me then it seemed like they forgot AL about me.It was a couple of months before I got my results because there was "nobody there to send them’ until my husband did soon.screaming and shouting I got a phone call call within a couple of days wby do we have to be rude to peope to get things done


#9

So sorry to hear - and such a huge worry for you when you have so much on your plate already. So often (it seems to me) that various professional pass the buck between themselves - GP to Parkinson’s nurse to Consultant specialist - makes you wonder whether any of them know anything worth knowing. Then we found a lovely lovely GP (as a result of needing an emergency appointment and it was her we saw - complete chance) who decided that if no one else was going to do anything, then she would. There is a place reserved in heaven for the likes of her.
Local authority social care services? District Nurse? Practice nurse. Does she have a local Parkinsons’ support group? - they will know local resources best. There must be someone out there.
I also wonder whether her symptoms are being put down to Parkisnons’ ( a familiar tactic) - but they could of course be related to something else - is that worth exploring?
Hang on in there (as no doubt you will!) - there is help but it can be difficult to find it - especially from a distance.
Pippa