Morning to you all....just wondering how often do you see your PD nurse?
We were told in the beginning by the consultant it would be every 6 months to be seen by him and every 6 months to see PD nurse. So we saw someone every 3 months.
We were seen by the consultant at 8 months obviously we realise they are busy so were not unduly worried about that.
We saw PD nurse last November nearly 10 months ago so not seen or heard from her since..despite leaving messages on her phone. She was copied into the consultants letter.
Things are changing rapidly with my Husband but cant even get a GP appt until August 18th......
Feeling very much at a loss and quite let down by the lack of support, ,wondering if this is normal? We are in Wiltshire are other Counties the same?
We were told in the beginning about all the support around but sadly we dont seem to be able to find it....I know we can ring the PD helplines but its not the same as having someone in the same room so they can see what is actually changing......
Hope you all have a lovely weekend and thankyou in advance for any help or advice you can offer us x
I live in Scotland and I am extremely lucky with both the PD nurse and the movement disorder specialist I am under.
We can phone them whenever we feel we have to and if no reply they both phone back usually the same day and at the latest the following day.
After discussing the reason for phoning,if this is not resolved by the phone call you get an appointment usually within 2 or 3 weeks.
The health board for the area have to make cut backs due to financial difficulties so realise things may change here.
Hope you get some replies from folk in England.Is there a PD support worker for your area or someone similar who could get some answers for you,sorry I can't be of more help.
It's unfortunate you're not getting the support from your PD nurse that you should.
I'm in greater London and although I get the usual 3 seconds with the consultant every 6 months, I can see the nurse more often. I leave a message and maybe see her every couple of months.
I would definitely bring it up with the GP and see if they can find out what's going on.
Do you have a local adviser where you are? I'm really sorry to hear that you're feeling so unsupported, that's not fair. It could be that the nurse is just extremely busy and works a large area, but I don't know that.
There is a PD advisor in the area who I have actually met. She is very nice and always gets back to me.
There is a local support group here around here which I did go too a few times,everyone was a lot older than us but very friendly. I found they all talked about the stages they were at and medications etc...not really what I was hoping for so I have not been for a while. One thing I noticed was that they all seemed to be able to see or speak to the PD nurse ad hock.
It did make me wonder if thats why we are not able to get an appointment ourselves,the PD nurse is obviously busy and maybe because we dont "pester"we are overlooked?
We both appreciate that the NHS is overstretched but do worry where we will be when things get really bad......
Hi Babesbrown, hope you feeling ok as not being able to get to see your pd nurse not great.
I live in North East Derbyshire, I see a Doctor who specialises in movement disorders every 6 months, but he has 700 patients and in a part time post, I call him Dr Bond 700.
Parky nurse also part time 2 days a week 700 patients and does home visits large rural area.
However see gp regular, well 3 of them now just to ensure get an appt. feel a bit like you at times, does not help.
All I can say is thinking of you, not much help but sending a cyber hug xx
I live in SE Kent and, for the first year of my diagnosis, I didn't really see my nurse as regularly as I would have liked and for a time I felt quite unsupported and alone. However, since my condition deteriorated and my doctor contacted my neurologist on my behalf, she has been in contact a lot more and will generally respond quickly to an email. My nurse is brilliant but she covers such a large geographical area that I can completely understand why appointments can be somewhat sporadic.
I certainly would recommend taking the initiative and getting in touch with your nurse rather than waiting for her to make contact with you - especially if she has to cover a large area.
Yes taking the initiative is always a good idea. I do I ring the hospitals that are covered by both my movement specialist and nurse. I leave numerous messages and sometimes to no avail.as I am sure they have their answer machines at breaking point and a pile of messages that they can never answer on a part time working basis.
I do not have the luxury of seeing a neurologist and contacting staff by email is deemed not to be secure enough.
Initiative too right, I made a complaint about the system asking for email option to be made available as other pd folks in my area waiting sometimes 4 or 5 mths for a response.
It is a different standard of care dependant on where you live, and not simply a case of using ones initiative.
I make use of gp's they prescribe pd drugs and am encouraged to do so.
I am happy you feel supported and are able to contact medical staff by email, this is not the case for all of us. Some areas may not even have a pd nurse.
I certainly don't regard a twice yearly appointment with a consultant a "luxury".
I am aware that sadly the level of care does vary across the country which is why I made the point about chasing and keep chasing - even more important if you live in an area where the Health Authority is really under the cosh.
Regarding feeling supported - it was only through my GP hounding the consultant and informing him of my mental state due to the ropinirole affecting me badly that I started to get any support. I email my nurse because I prefer to email as I have trouble using the phone due to my impaired cognition and being able to process information quickly.
When we have phoned them, not very often, it's usually an answer phone message, often with the fact that they,'are on a course', 'at a conference,' 'on holiday.' When you do eventually get a phone back it's an appointment in 3 weeks or so.Far too late for intervention when you have phoned because you are in crisis because of something new.
What annoys me even more is that in the last year we have had a new PSN and, because she has to be in clinic on the very day that our branch meets, she can never attend, or has made no effort to tell the consultant that, maybe attending our meeting, once in a while,would be good to resolve small issues, before they became greater issues. And the best of all that this PSN said, 'well, I have to attend clinic because the consultant needs me to learn!! 'There was me under the delusion that PSN's were just that; specialists, to some extent on the condition, NOT learning on the job.
However, our PSN, in the last year has been only too happy to attend our PAW event, free Christmas lunch, and free tickets to our branch's fundraising events. Perks of the job, seem to come before actually doing the job.
