Parkinson uk nurse…

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Hi Scunny,

I see this is your first post, and the forum does take some getting used to, so prevail and try again to post what you wanted to say, please.

You have actually opened up a thread for me that I wanted to start so hope that you won't mind if I hijack it as I have been in contact with Admin. as I can't , for some reason,  start a new topic.

Are you happy with your PNS or not?

My OH has now been in hospital for just over 2 weeks. There IS a PSN based at that hospital. The day after  they were admitted I had reason to call the PSN at the clinic they attend to say that I could not discuss  the tweaks in their medication, as arranged, as they were in hospital.I fully expected that they would contact our local PSN to tell them that my OH was in the local hospital.15 days and NO contact!!! Frankly, I am disgusted.

I suggested some time ago that our local PSN attend, maybe twice a year for an hour or so, our branch meetings to, informally address little concerns that did not require an appointment for a home visit, which, in my experience, with them being on leave, being at a conference, is usually 3 weeks or so later.

Further disgusted to have the PSN say that our meetings clashed with their clinic attendance AND, even more  disgusted for the PSN to say that, the consultant wanted them to learn. Do they not have any training or expertise on their appointment, seems not??Now I do see the need for PSN's to sit on on appointments with those newly diagnosed and those who have a problem    with their medication needing adjustment BUT, SITTING IN ON EVERY APPOINTMMENT?? why?

In the 20 years since diagnosis, we have rarely  needed a PSN, and have not experienced this until recently,sitting in on every consultation.

I ask why PSN's are not out there, in the community, doing what I and others, expect of them??

Our local PSN  has been in our area now for a year. Not one phone call in that time to see how OH is but they are full on when it comes to attending some of our fund raiisng events.
 

Maybe PUK can advise me of the job description of PSN's. Should they make contact with PWP in their area maybe twice a year and should they attend branch meetings at all?

If their remit is neither of the above, then or branch will seriously consider any further donations to extend the PSN's network.

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Over to you PUK.

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Hi Benji,

I'm really sorry that you are so disappointed with your Parkinson's nurse. You can find out more about what they do and what their remit is here: https://www.parkinsons.org.uk/information-and-support/parkinsons-nurses

Have you been in touch with your local adviser? They can be a huge source of help. Please have a look here if you haven't contacted yours yet: https://www.parkinsons.org.uk/information-and-support/helpline-and-local-advisers

It would be very helpful if you could ring the helpline to discuss the issues you have been having with your Parkinson's nurse. As you know, you can access Parkinson's nurses on the helpline, but it might also be very useful to explore what can be done to improve the service you have been receiving from yours and look at alternative sources of help.

Best wishes,

Mara (Moderation team) 

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My husband hasnt  seen a PD nurse for over a year....despite leaving messages on her voicemail asking her to contact us.

She was copied into a letter in April from the consultant asking her to contact us....

I saw the PD local advisor a few weeks ago at a group and mentioned it to her,she said she would email the nurse.....

We saw the consultant again in October and again mentioned we hadnt seen the PD nurse...she was again copied into the letter we recieved back from the visit asking her to contact us...

Well.last week we finally got an appointment for December..over 15months since we saw a PD nurse..at the bottom if the letter in capital letters it stated "If you have seen your consultant recently please ring to cancel this appointment and reschedule for another time"..!!!!! She has obviously received the copy of the letter from the consultant so knows we saw him in October.

BUT there is no way we are cancelling this appointment as its taken over a year to get it.....

Feeling sadly let down by the system......

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BB,

Sorry to read not much progress on PD  nurse situation.  I really hope you are able to sort things out with the pd nurse in December and before leaving the appt you will have booked your next appt.

Fingers crossed BB, good luck and take care. x

 

 

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Morning TeeHee..

Thanks for your reply.

At the moment both myself and my Husband are very despondent with the whole PD situatuon.When my husband was diagnoised by the consultant, the GP admitted to us afterwards that he had probably misdiagnosed him for 4/5 years...it was frozen shoulder,trapped nerve etc etc.because he was only 55 when the symptons started.He was to young for the PD diagnoisis.....this happens so many times I now know.So my husband is probably 6years + down the line with PD now.

Then we were told about the amazing support and help available to both of us....face to face help not phone line help! Sadly that hasnt materialized for us.

At the moment my husband is really angry about the PD nurse and the way he is being treated, basically having to complain to get an appointment. We are not the complaining sort of people normally just get on with things.

He is saying he cant be bothered to see her as he may say something to her, but its me who is saying we will see her and we are not going to reschedule the appointment on principal.....surely anyone with PD has enough stress in their lives without the "professionals" adding to that...we are both working still and my husband is pushing himself daily to carry on as he has a very manual job. I know he is deteriorating before my eyes.... Maybe to the PD nurse he is just a name on a list.....

Thats the way the system is making us feel...

I will let you know how the appointment goes...not holding out any hope of another appointment booked on the day though....

Sorry if this sounds like a rant but its just the frustration of it all and not meant to be a moan....

Thanks for your reply.

Denise 

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Denise,

It's not a rant just you releasing all that frustration and its good for you.

I was diagnosed with PD aged 46 , a few months away from my PD 10 yr anniversary.  I am changing my pd nurse as no support , etc... I will have to travel a bit more but I am hopeful this will help. Is this an option for you?

I discussed this with my GP who agreed and did the paperwork, awaiting next appt details.  I like you  have problems getting an appt. and when I do see her its a negative experience. I am not convinced caring, supportive are words in her vocabulary I feel she is cold and dismissive.

 I think she may be an NHS android /robot in the guise of a female and have to resist checking the back of her neck for wires or a plug socket. 

My little burst of frustration BB, but am thinking of you and keep us updated. 

Xxxx

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Seems it is not only us that are having problems with PSN's. Thanks for your posts, babesbrown and TeeHee.

 

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OH now home for 8 weeks after 101 days in hospital. No visit whilst an inpatient from the PSN since before Christmas or since discharge from hospital.

Indirectly we have heard that the absence will be a long one. Why has nobody contacted us with an alternative contact.

We are also in limbo with regard to a consultant. Our consultant of many years is not in our local health board area BUT, one has been appointed for our LHB but has no knowledge of the many past years of history. Continuity is very important.( Whilst in hospital many doctors wanted to change medication, almost on a daily basis. They didn’t understand that one bad day did not warrant a change/review of meds.)

However, getting to the appointment would be a nightmare and impossible. We can however, see a Dr at our local hospital, the one whose care was less than exemplary whilst OH was an inpatient, who increased and added new meds, which had no benefit or improvement, and who also missed a problem that has now resulted in an urgent referral for a CT scan after I expressed my concern for months.

Between the devil and the…

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I think that it is a common problem. I had about 2 phone calls and 1 clinic appointment when our community nurse started ?4 years ago. Then nothing. I don’t think there are enough of the them and the job description seem to vary between areas.