So frustrating getting help and Advice from PD nurses


#1

My wife was diagnosed about 12 years ago and up until recently the medication originally prescribed worked and she led a pretty normal life. The last 18 months things have deteriorated slightly with a need for medication changes but trying to get hold of a PD nurse is no mean task in itself.
Leave an answer phone message and the lottery of getting a reply begins! Call me selfish but I want help for my wife now, not in up to 5 days time!
Our designated nurse only works Weds/third and Friday. I find myself leaving abrupt messages to gain a quicker response. If only an MP would one day canvass on our front door he/she would get both barrels on the chronic underfunding of the NHS, believe me!
Any contact with the GP involves them just referring us back to Neurology or ME explaining to THEM what the particular medication is for!!
I hate criticising the NHS especially those on the front line but we all want the best for our loved ones.
Anyway, today we start the lottery of contacting the PD nurses again.
Wish us luck.


#2

Hello,

You must be really frustrated trying to get some advice and support, Try the helpline you may get some success there.0808 800 0303
Good luck and hope you get your wife’s medication sorted out soon.
Helen


#3

Thanks BethanKit,
Parkinson’s UK have been brilliant when we have called them. Great advice on many topics and without them we would be lost.
Just these medication adjustments need PD nurse approval and prescription.
We will get there but it is so frustrating!

Regards


#4

welcome to our world my husband has every pd symptom known we have . well did have an uncontactable pd nurse who has now apparently gone sick, messages never responded to doctors shrug and say we tend to leave pd problems to the professionals! medications have in the main been unhelpful, now john has memory probs, anxiety attacks, panic attacks, bouts of heartbreaking crying all his bloods urine heart tests come back negative for issues, thank goodness for parkinsons uk they are a veritable lifesaver with their prompt answering to queries and ability to listen, christine


#5

Christine1948.
That is shocking. When a PD nurse does call back it is though you are a hindrance in asking questions but on a very rare face to face appointment they are all sweetness! I am considering going down the complaints procedure via our local health authorities PALS system. It has worked before but why do you have to shout to get anything done? The NHS is marvellous but is drained by non medical hangers on and governments that are only interested in statistics and not the real facts.
I believe the NHS rely too heavily on Parkinson’s UK and the like but God without them we would all be stuffed!!


#6

Part time and never respond to messages left.

Has anyone seen the advertisements for Parkinsons specialist nurses and the salaries that they receive??


#7

I have been unable to contact the PD nurse for my area. To avoid the 5 month wait for a neurology appointment, I see a private neurologist at my nearest Nuffield hospital. This is more inconvenient than expensive: he charges £160 a visit, which is affordable a couple of times a year, but the Nuffield hospital is a 90 minute drive.

I have had physiotherapy on the NHS, and of course I get my drugs for free, but I pay for chiropody (without which I cannot walk).

My experience of seeking diagnosis of and treatment for PD on the NHS is almost identical to my father’s 25 years ago. National Health Service? I think it would be a good idea.


#8

agree completely, or pd nurse now on extended sick leave. in effect this has no impact on our situation as she was no help at all this just not my opinion but of anyone who had crossed her path. don,t want sympathy, just practical advise and positivity. we know there,s no cure but to be told to shut up because i.m anwering for amy husband who cannot either speak or remember what is happening is neither an example of empathy nor professionalism, ater all all appointment letters ask you to bring along someone who may be able to fill in the gaps.


#9

We did contact Parkinson’s UK and a nurse called us back within 1/2 an hour! Marvellous and the nurse was so helpful with advice. A real dedicated professional who I assume gives up some of her time to help those that need that help.
Thankyou Parkinson’s UK.


#10

OH has now been in hospital for over 12 weeks. PSN is fully aware that they are an inpatient. Have seen her once and that was only because I phoned and asked to speak to her.

Appalling waste of PUK resources. Also the PSN told me to my face that she cannot attend any of our meetings, not even for half an hour twice a year as she is needed in clinic so that,‘she can learn.’ Does PUK appoint nurses with no expertise in the condition ???

nic, so t hat she can learn.’


#11

I find it outrageous that any one feels they Have to pay for treatment and annoys me that the government sets targets for the NHS They must know they cant. stick to them it it just puts more pressure the people we mostly rely on for treatment .

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#12

I have found the response I get from my PD Nurse is much improved since I started communicating with her by e-mail. Gerrard


#13

My husbands “care” if you can call it that is appalling…He saw consultant in July (6 months late so it had been 12 months since his last appt) and got a letter afterwards to say he will next be seen in 12 months…no doubt that appointment will be overdue as well…Parkinsons nurse has had no contact with my husband for over a year! Messages left on answer machine go unanswered…my husbands PD has been deteriorating quite rapidly in the last few months. He will not give up and continues to work full time. (He has cut down his hours slightly)…
Today I recieved a letter from PDUK asking for a donation to help fund their research? I am really cross because the money is obviously not going to help to provide more services for the actual people with the PD…where are all the PD nurses and consultants? We need to be able to access regular appointments and have reliable nurses…who actually understand what everyday life issues are for the PD suffer and their families…


#14

Hi @Babesbrown,

First of all, I am so sorry to hear that your husband has not been seen by a consultant for such a long period of time, especially as his health has deteriorated in the process. My thoughts go out to you both and I understand your frustration with receiving a letter about donations from us in light of the information you’ve shared. I just want to reassure you that we definitely listen to people like yourself so that we can drive improvements in Parkinson’s care services as well as use the generous donations we receive to fund our research.

I’d highly recommend that you contact our helpline service and speak to one of our advisers about this. They have extensive knowledge in this area and can arrange for a Parkinson’s nurse to contact you within 24 hours . Please give them a call on 0808 800 0303 as soon as possible so that we can provide you with more support on this. We’re open from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email [email protected].

I hope you find this helpful.

Best wishes,
Reah


#15

You’re lucky to have a means for direct contact. We can only contact the PD Service via a central call agency and have to justify why we want to contact the nurse. I always feel as if I’m regarded as a nuisance. I had expected a bit more advice and moral support especially as I do not have a partner/support person. It took 18 months to get an initial appointment and I now have an annual review meeting (which is the basic requirement of the service level agreement).
My nurse is a non-prescribing nurse so problems and changes have to be reviewed via the nurse, the prescribing nurse, the GP and the consultant!
The recent/current problems with availability of Sinemet 12.5/50 and not being able to fulfil the prescription has been seen as my problem. Fortunately my GP responded to my request for a separate prescription for the alternative - Sinemet 25/100 (also in short supply) - so when I found a supply I had a prescription ready to use. I’m hoping things get better in the New Year as I seem to have done nothing other than trail round different Pharmacies for the last few weeks and getting really stressed.


#16

I do feel lucky when I read what obstacles you have to overcome in order to contact a PD Professional Nurse. I obtained my PD Nurse’s e-mail address in a face to face meeting. Are you not able to do the same? Since doing that, I have found that she responds to any issues I may raise within 48 hours. Regarding the difficulty you have encountered obtaining Sinemet, have you considered changing to another levodopa? I take Co-Careldopa which I believe is the same as Sinemet and I have never encountered any problems with supply. Gerrard


#17

As the person who started this Status it has been distressing to see we are not in the same boat. We have had one visit from our NHS PD nurse back in August. Her answer to the questions and problems we raised with her was to send us a load of leaflets!
Since that visit my wife’s medication needs tweaking as she is having regular “off” moments before her next dose is due. 3 weeks have passed and no response from the message left as of today!
We have recently changed to a different GP at our local surgery who is taking a much more active role in helping my wife. She has asked the Neurolgy team to contact us but even though PD does not stop for Xmas they have made no attempt to help my wife to have a more comfortable Xmas!
I need to add that Parkinsons UK have been fantastic. My wife called the helpline who arranged for a nurse to give us a call and within a few hours they called and suggested what may work.
This year my wife has had a cataract done and a breast cancer scare which the NHS were absolutely fantastic in dealing with.
I WILL get my wife seen as I am like a dog with a bone when it comes to my loved ones but why does shouting and banging desks have to be the way to get yourself heard? It doesn’t help my wife getting stressed and it certainly isn’t helping me!
Anyway, merry Xmas and here’s to healthy and happy New Year to you all. X x x


#18

Hi Reah,
Having re-read the comments on this thread I am somewhat confused as to the comments about Parkinsons UK employing the Parkinsons nurses out in the community. I know that PUK have Parkinsons nurses available on the helplines but surely the NHS employs those who see PWP face to face out in the communities. Apologies for a silly question but I am getting muddled. (often happens lately!)
Rose


#19

Hi Roro,

Thanks for getting in touch with your query. You are right- all Parkinson’s nurses are employed by the NHS. We have some information on Parksinon’s nurses here, if you’d like to read more: https://www.parkinsons.org.uk/information-and-support/parkinsons-nurses

I will pass your question along to Reah so she’s aware that you have been in touch.

Best wishes for a lovely Christmas :slight_smile:
Min
Moderation team.


#20

Thank you for replying so quickly and clarifying. I wish you all a lovely peaceful Christmas xx