Who Cares & Who Cares


#1

Who Cares & Who Cares

 

From my experience if you live in Brighton, Sussex the answer is nobody to both questions.

 

I was diagnosed about a year ago. At least I think so. The neurologist couldn’t seem to decide and the nurse said if the meds aren’t working then I don’t. And they aren’t, never have, and make me worse.

 

I have tried several meds but now I’m back on the madopar. It didn’t work first time and is even worse this time. I can barely stand or move my feet. Of course the obvious thing would be to stop them. Yes, if I could get someone to see me and change the medication.

 

The GP is the obvious choice but he tells me he knows nothing of the meds I need. There is a Parkinson’s nurse. You will find him at a week long meeting, on holiday, training or sick = NEVER. In every job in the country there is always a replacement, not in this health authority.

 

Two months on from again seeking help again I find there is none. Nobody cares and nobody cares.

 


#2

I find this really odd,i have had pd for 8yrs and my doctor was very understanding,my nero consultants,my pd nurses,and also my pd support worker all fantastic ,i suggest you have a good word with your gp & get a appointment with your nero consultant.I find this really hard to believe,sorry or move to dorset.


#3

Love Dorset. Lived in Corfe Mullen and Puddletown. I'm not prone to lying. The nurse was still sick when I phoned today, two months on. The is no-one detailed to take over. The automatic email suggests the GP or this website.The GP said not to stop the meds and to wait until the nurse is back. The neuro can't see me until Dec 31. In the meantime... My father had Parkinson's and his care was tops. But he didn't live in Brighton


#4

Hi writerken

After 5 fruitless attempts to get a reply box, one appears at last!

I am so sorry that you are having such a difficult time.Gus is right...you need to be clear with your GP that the situation is intolerable and causing you distress and need a referral to someone who is prepared to help.

Could you also ring the helpline..number at the top of the page and get good advice and support from a trained nurse?

Good luck and keep posting.

Love

GG


#5

Sorry if it sounded like i was makeing you out to be lying,your message just makes me angry to see that there is no support for you.Parkinsons uk go out of there way to make sure no one has to face pd on there own.Give them a call you might be surprized.tel no 0808 225 98281 its free helpline. and im sorry let me know how you get on.


#6

ALSO TRY FINDING YOUR LOCAL SUPPORT GROUP. GOGGLE IT!


#7

Done some research for you there meetings brighton & hove are every third saturday of the month at 2.30pm to 4.30pm at bishop hannington church hall, off holmes ave, hove, bn3 7lb. support offiicers jenny wilcox/ gillian marsden tel 0844 225 3609  hope this helps if im right that means this saturday local bus 5a stops outside.


#8

false hope its the 4th saturday  this week sorry.phone them tho hey! what you got to lose


#9

Hi  Writerken

(Great Minds!.)  .If you follow the links from "Support for You"  at the top of this page/Support in your Area/South-East (yes S.E.!!) you will get to the  Brighton and Hove Support Group.  They might have some info. on what is going on regarding the local Parkinsons Nurse.  In my area the PD nurse was promoted resulting in having half the time to see to PD patients for quite a long time and the neuro was mononosyllabic.       I didn't see the PD nurse for several months after dx. and he  "didn't   do reviews"   but fortunately for me I had  responded very well to the Sinemet after some very unpleasant sickness when building up to the required dose  Now we have a new PD nurse (three years on) who does answer the phone. do reviews and doesn't so far seem to forget things like, e.g. physio referrals (twice forgotten)  I also found the PD UK helpline a godsend on the emotional and the practical side the two or three times I contacted them in the first few weeks after dx.     

I shouldn't need to wish you good luck in getting basic managemennt of your condition but alas it does not seem to be as uncommon a situation as it should be.

 

Best wishes

 

 

pipped at the post  - I see Guss has done the necessary

 

 

 

;

 

    


#10

Thank you for the help. I will be able to phone or contact online but sadly I am unable to leave the flat Since taking the meds I can barely cross the room. I also sound drunk In a matter of months I've gone from using a stick for gentle support to my feet superglued to the deck and unable to move without stumbling


#11

Hi writerken.

Really sorry to hear about the problems that you've been having.

Parkinson's UK have Information and Support Workers who can help you sort things out and make phone calls on your behalf etc. They will visit you at home too. I found mine very helpful when I was having problems with my employer a few years ago. 

If you click on 'Support For You'  at the top of this page, then click on 'Information And Support Workers", then 'Contact your local info and support worker'....then there is a link 'search for your nearest info and support worker'. Enter your postcode and it will bring up details of your Info and Support Worker and also your local PD nurse. It gives you an email address for the Info and Support Worker so you can email him / her if you sometimes find it difficult using the phone. And like I said before, they will be happy to visit you at home. 

Hope this helps.

Kathy  smile


#12

Thanks all. I'm pleased I joined. I feel like I might get some help.


#13

this is great everybody replying to you .you must now no alot of people do care.not saying come of your tablets as IM NOT A DOCTOR.but do you feel better when you have stopped them before.i have always been in charge of my meds if they did not agree with me i stoped and asked for different meds, i know its a bit harder for you because you have no one to contact but hope this changes.good luck


#14

My GP has been ill so since I've had Parky I've seen any doc. The interest from them is not there. I do control my meds and won't take stuff that doesn't help. Somehow he convinced me to get to 125 of madopar four times a day. When I told him I wanted off two weeks ago he said I'd get much worse, and there was little point in trying other meds. I can't just stop and I'm not sure he'd perscribe a lower dose.

Today I sent a mail to one of the nurses on here. Fingers crossed, Gus


#15

thats good hopefully a step closer to help! keep us all informed


#16

The nurse phoned. Just chatting helped. She is willing to act as go between. Left messages with neuro. Monday might bring a result.


#17

thats great news,i bet you feel a bit betterlol