Lack of pd nurses


#1
were have all the pd nurses gone too ,i was dx in 2004 when i was 3 ,huge shock to me ,and cus i was young did not no nothinabout pd at all never herd of it really ,so i blubbered all the way home ,i was then givern a pd nurse ,and she was a wonderful lady always on the other end of the mobile ,and then bang in 2008 she moved to london to further her carer and since then we keep getting told we will get a replacement ,but my god how long is a pigging pice of string cus we still a waitin ,and i dunna no about u when u really need a medical person to speak too theres never one around ,bit like a police man :smile:

#2
:laughing:age ment to say 34 ,not 3:smile:

#3
Totally agree with you Ali,its really not fair.I really don't know what i would have done without this site over the last 4 months.The only place i could turn to was here for advice and support.Have been a bit down with things being quiet on here recently.
All the best
Titan

#4
well it not gonna be quite on here no more titan, people need these kinda sites and all the rubbish thats been goin on has to stop and get back to a proper site for people with pd and for others who are concerned about family members with pd ,cus thats wots it all about .:smile:

#5
It seems to be a lottery as to where you live and which consultant you see. I have now been diagnosed with MSA and need to see a PD nurse inbetween the consultant which is at 6 monthly intervals or longer.It is a battle but I wont surrender

#6
There was no PD nurse when I was diagnosed and subsequently we had one for two seconds.... I saw her twice before she left. On the second occasion she gave us 3/4 hr of her time and told us to ask as much as we could before she left.They never replaced her. Apparently the post was funded by a charity for two years then after that the post was dropped. Another source said they couldn't find anyone to qualified to replace her. I saw a neuro physio twice before she also left. As far as I know she's not been replaced either. Who knows. Although I have a good GP I get all my help online but it's scarey.

#7
We had a nurse until recently, when she retired, now the PCT are saying they have to make budget cuts and they do not want to replace her. Someone here mentioned that a charity had put up the money for two years to get a nurse in their area. That would probably be Parkinson's UK - under its old name.
In our area the branch worked very hard at fund raising to put a large sum of money together - i think head office matched the amount too - so there was enough to get a nurse and pay the costs for two years. The deal was that the NHS would then take on responsibility and continue to pay the salary - so disppointing that they want to stop spending - are we second class citizens or something?.

and they say theres no such thing as a post code lottery...

anyone else facing this situation? will be talking to PCT and any background will be useful.

#8
Similar situation in my area except that the shortfall is due to the fact that the PD nurse was promoted to encompass a range of neurological conditions and now has only about two days for PD where he was pushed to help everyone who asked when he was full time PD nurse. Like yours he was also put in post for two years by the Parkinsons Org. helped by fund raising by the local PD groups and they are not best pleased. When I was first dx 18 months ago I knew about this and he said they were expecting to get an assistant for him. The second time I spoke to him he denied having said this. He is speaking on the role of the PD nurse at the World PD Congress in Glasgow!!!

#9
I believe the whole of East Yorkshire, including North Humberside and the City of Hull, is covered by 2 PD nurses, 1 of whom is about to retire.

#10
Morning all,

I live in Liverpool and it's much the same here. I've never seen a PD nurse. I've recently changed my neuro and I asked if I could be introduced to the PD nurse. They took me to another room and introduced me to a nurse but during our conversation she told me that she was the OT and was also covering the job of PD nurse cos there wasn't one, bless her but it soon became apparent that she knew very little about PD in terms of treatment or symptoms so .... pop went my hopes.

Hospitals have specialist nurses for all sorts of conditions why are we the poor relations?

#11
Morning all,
when i was dx ,i found out has much as i could and through the pd website was told there was a pd nurse in my area ( cumbria) ,then the following week saw my gp and i was put in touch .to be on the phone for advice and talk to helps a great deal ,when a probelm arose with a pd drug, next day i was put on another.
i agree with everybody there should be more pd nurses out there for people to access and find out about pd drugs, nuro appointments etc,or just someone to talk can really can make a difference.very concern this is a wide country probelm and alot more needs to be done.all my knowledge about pd has come from self-help digging on the internet and forum.:smile:

#12
Hi Glenchass.

I've just sent you a private message.

Take care.


Kathy

#13
Hi.

I live in Warrington, Cheshire, and when I was first diagnosed in February 2007 I was told that there was no PD nurse in my area. However, my neurologist referred me to a PD nurse team at the Walton Centre For Neurology and Neurosurgery in Fazakerley, Liverpool. They have been very helpful to me, and one of them even came and visited me at home when I was diagnosed, as it was difficult for me to get there.

Since then, I have phoned them occasionally about issues which have arisen regarding my meds, and I have always found them to be helpful and informative. They are sometimes difficult to get hold of, but if you leave a message, they always ring you back.

Recently I have discovered that we now have a PD nurse in Warrington, who has apparently been in post since January this year! I only found this out by chance, through talking to my PD Information and Support Worker, who I had contacted about another matter. The Warringtn PD nurse visited me at home recently.....she was very helpful and gave me some advice about medication. She is also helping me sort out an issue with my referral to a different neurologist. She does clinics at various health centres in Warrington, so in future I can make an appointment to see her at whichever one is convenient for me.

So.....for once, I guess I am lucky! PD nurses are usually friendly, helpful, nd they often know more than the neurologists about PD meds. And they are certainly more approachable than most neuros!

Anyone who has been told previously that there is no PD nurse in your area....it's worth checking again, in case they have sneaked one in without you knowing, like they did in my area!


Kathy :smile:

#14
Thanks for that.I've recently been looking into that for my husband.