My partner has just been diagnosed and just started medication, he has an app with a consultant early March. We are going armed with questions, but I wanted to ask you guys on here what does the P nurse do and how often do they see you and most importantly do you automatically get assigned one ?
We noticed this was your first post and wanted to welcome you to the community. We would recommend asking your
GP about assembling a Parkinson’s team for your partner. We would also suggest having a look at this section of our website for frequently asked questions, in addition to the feedback our community members will soon provide. Added to this, we have a free and confidential helpline staffed with advisers who are happy to answer any and all questions you and your partner may have. You can reach them on 0808 800 0303.
With our warmest welcome,
Hi…my Husband has had PD for many years now…he was lucky if he saw the PD nurse every year before covid hit. Then he never saw her for over 2.5 yrs,he eventually saw her after literally demanding an appointment with her. To say it was a total waste of his time seeing her would be an understatement. Everything we asked her she just replied to exercise more! She was no help what so ever. We asked about medication, on going changes in his PD, his speech changes and loss of his voice, walking problems etc and she basically was not interested in anything we asked her.That was 15 months ago and he has not even had a letter from her recording the meeting… he has not been sent another appointment either… We were told when my Husband was 1st diagnoised years ago that the PD nurse would be our 1st point of contact for any concerns we had, to telephone or email her.She could deal with medication changes and would have a wealth of advice to offer us if we needed it… Sadly that has not proved to be the case for us. We attend a local PD group and people there are complaining they have the same problems with their PD nurses as we have…having not seen theirs for over 2 plus years. Then others in the group appear to be able to see their nurses without any problems… So I am not sure why there are massive differences?
When things work with PD nurses they appear to work well…
I would be interested in what happens when your partner does get to see the nurse, I went for my first visit last week I did not get in till an hour after my appointment when i did get in think she in in a hurry to catch up on time was in there 5 mins and she said up my tablets dont know why because she had hardly asked how i was feeling , I then listened to her tell me how common PD is, I did get a few questions in but to be honest never got a straight answer I asked her how many times would I get to see her she said in about 6 months handed me a booklet and of I went don’t know if they are all like with anyone else and I didn’t know what to expect, but hope yours give you lots more answers all I can say is push her for your answers good luck
The 1st time my husband actually saw the PD nurse many years ago she was amazing, unfortunately she told us that she was leaving on that 1st appointment and that my husband would be allocated another PD nurse…we waited ages and then had to instigate the appointment ourselves. When we finally got to see this “new” PD nurse we were kept waiting for over an hour( we had the 1st appt of the morning as well).We were sat in a corridor of the local hospital and she walked past us several times so knew we were there!! Then when she did eventually call us in she told us that her cat was ill and spent more than half of the appointment talking about her home life and her ill cat…and that was the start of our journey with her…and unfortunately it has not got any better…we definately will not be pushing for another appointment with her as we feel she has never given any proper advice, help or support from the 1st time we met her…sad times for my Husband as he is the one with PD and does not actually deserve this basic neglect of care…
I have to say since I was diagnosed I have felt I am on my own I have looked up on the internet (but only keeping to NHS site) and Have lot of symptoms, but all anyone want to do is up my tablets, I am thinking of joining my local group that meet every month, I am not sure what I want to be honest I know there is no cure, so we just have to get on with it, but it do seem the professional in PD Doctors Nurses, etc, seem to want to talk and not listen and some times that all I need someone to listen take care
On first diagnosis I was working within the NHS /Community services and I often carried out joint visits with the specialist nurses so that did alter my experience. My neighbour was also diagnosed a few years later and found accessing the PD nurse extremely frustrating. Over the years I have seen consultant once a year and PD nurse within that year, so only two opportunities a year to discuss the good the bad and the ugly which is not a lot I agree. Since a big shake up of services and county boarders changing I will say access is not as straightforward but it is still there. I know how disappointing and angry it feels coming out from an appointment with no answers or the worst being “yes that’s part of the disease and I don’t what we do about it”.
We do have a helpline and i have always received a return call when I’ve rang and left a message.
I have found, or rather did because bless him he passed away last year, that a fellow PD person can be your best support because they will know what you mean with very words because they do too.
Oh and just one more thing …I was so perturbed on one visit and the only answer I kept being given was exercise, exercise, exercise I came out feeling like a complete and utter lazy slob not good at all.
I am afraid I have only a couple of words to say “Really frustrating”
One of the most shocking things I learnt from the forum is that Parkinson’s services are not consistent across the country as your remarks demonstrate all too clearly. The NICE guidelines state that patients with Parkinson’s should be reviewed every six months and I am one of the lucky ones that has had this right from the beginning. I see my consultant and Parkinson’s Nurse once per year six months apart. I can also contact them between appointments if necessary
Again from the forum and as some comments on this thread indicate, it would seem the quality of service offered by the Parkinson’s nurse can be variable. I think it crucial they have a good working relationship with the consultant for the service to be effective and again it would seem this is not always so.
Parkinson’s nurses are a good source of information on local resources and how to manage any general issues that an individual may be experiencing. I don’t know if it is true of them all but certainly some are trained prescribers and can prescribe medication. One of the big problems is that usually it is one person covering a large geographical area and carrying a huge caseload, so contact outside of planned appointments can be slow.
I have a good relationship with mine although since she only sees me once a year for 20-30 minutes I sometimes thinks she forgets the rest of the time I manage myself and do know what I can and can’t do and sometimes it does feel a little patronising to me. She usually recommends I keep a diary of symptoms and I have been telling her for years that I am not a diary person and it wouldn’t work because it’s boring, As has been said above she repeats the repeats the regular exercise mantra despite my having a regular routine and at some point when I suspect she thinks I am not taking it seriously (not true but I don’t want it to rule my life) she will say ‘you do have Parkinson’s you know’ as if I can forget. I am very aware however that I am one of lucky ones and I do appreciate the service I get. Maybe one day we will all get as I do, the basic
minimum service as laid down by NICE at the very least.
Hi SJHN 21
I was diagnosed with PD in July 2022. I have not seen the PD nurse yet and I had to remind my consultant about it.
It is really frustrating!
I think it is important to be proactive and persistent in these cases.
Hi to SJHN21and all who have replied, I have read these posts a couple of times and can see there have been over 250 views with very little replies. I wasn’t sure how to reply particularly as it appears you have been struggling to get some help/support/guidance. I echo what Tot has replied, and consider myself fortunate to have a very supportive PD nurse. As Griff81 has highlighted it is important to be proactive, this may mean following up with a telephone call to your neuro consultant secretary and asking if your details have been passed to to the PD nurse team, mine was automatic, I had a copy of the letter, again this can vary between authorities. My motto, if you don’t ask you don’t get. If you have difficulty getting through try contacting PALS at your local hospital and ask them how to access. I hope this helps and you have some contact in the near future. If intersted please check out creative section, this thread has given me some though so have written a short verse, take care
I find it so hard , that all who have PD do not have help from a PD nurse I am lucky as living in Nottingham we have 2 large hospitals and 4 PD nurses, Jenny is the PD nurse that I see but if I can not get in to see her I don’t mind seeing one of the others. You can always get in contact with them. They are more like friends as they all treat you as though they have known you for years, Having said this we that is us who have PD should put in a complaint to your local MP telling them we need more PD nurse’s BUT WILL MPs LISTEN NO!!! There is one good thing though if you do need help you can always phone Parkinson’s UK they will listen and help
It seems there are more of us with useless consultants and nurses who just want to up the meds even when you’re telling them the side effects are horrendous. We gave up giving Parkinson’s uk monthly due to the neglect of the medical profession the money that’s donated surely they can come up with something other than the gold standard sinemet that’s been around for fifty years. They are not asking enough questions, why is it when we sleep the tremors stop is it that it’s not a lack of dopamine but too much of it when you’re awake, sinemet side effects are so horrible!!