What should I expect from my pd nurse - I haven't heard from her since last summer , and then it was only an unhelpful voicemail message in response to a request for help. At this point I gave up and have never contacted again . Should they not regularly make contact , offer support , occasional visit?
I don't think I'm alone in feeling that the support offered to PD suffers is below par . Like a lot of others I was told I had a life changing condition and then dispatch with a prescription and told to make an appointment in six months - my only option was to look on the Internet for information – thank god for this website !
I know the feeling! My local pd nurse is very good IF one can get hold of her. Parttime job. If I phone, I have to leave a message, she never answers a call, she calls back, supposedly within 2 days, but will only leave a message if one has a personalised answer phone which I don't. I have seen her only once, last autumn, and have another appointment this coming autumn. Her roleincludes giving advice about meds etc., but she is just too busy to be of use at the time you need it.
But, my consultant, who was initially rather unhelpful, has recently started to take more interest. I saw him once at very beginning of this horrible journey, then next time I had an appointment I only saw his registrar who admitted he didn't know much about PD. The following time it was a different registrar who said on concluding our meeting, that he didn't expect to see me again as he was applying for another post! I then had my one and only appointment with the PD nurse and mentioned the ineffectual registrars. She must have pulled a string somewhere as since then I have been seen by my actual consultant twice! He even organised a DAT scan, after saying at first I could not have one for about 2 years, it was all "wait and see" stuff! And I have hissecretary's email address - this is like gold dust - she gives him my message and replies to me so I am not left wondering. So, communication has improved - just wish I had too!
I was diagnosed by the Neuro on oct 1st in his letter he says i will 'review in 4 months', i take that is a appointment with him too see how i am doing but alas here we are in mid april and i haven't seen him, i have seen my PD Nurse twice since october and due too again in Aug(the appointment with her came though 2 days following in the post), and on my last appointment with her i asked about a appointment with him, "will he make the appointment" i asked, "i am sure he will he is busy" she said. that was march.
I have tried contacting the Neuro in the past, there is a number but it just rings and rings and no one ever answers, and if you go too the switchboard too make a attempt too make a appointment it goes too his secretary who only works two days a week and that always just rings with no answer. i am told hospital policy is too only make a appointment with the Neuro within six weeks of a space in case the Neuro goes on Holiday.
My PD Nurse did stress i can contact her at anytime day or night and i do have a number for her but i wont ring unless its the last straw.
with the Neuro It makes it look like a case of "we'll contact you rather than you contact us", i have my diagnosis and pills which i pick up from the Gp surgery.
Why is it like this? Surely at diagnosis arrangements should be put in place for an appt wit a pd nurse, a physio, a nuitritionist, a support worker and anyone else who can offer help. I keep being told there is a multi disciplined team to offer support .....BUT WHERE ARE THEY???
With all we hear about the NHS being under pressure,Perhaps it is,or theres no money? for such things, it's a bit like a visit too A&E diagnose an stabilise in 4 moves , we've been seen, we've got the diagnosis, we've got the pills, we're out the door.
My GP said they'll be lots of support, my pd nurse said i'll ref you too a physio, will they write i asked?, no they call in the first instance they'll have your details she said, i'm still waiting for that call. Perhaps after the election with them all promising billions.
Ite may not be the same everywhere but where I live, (East Lancs) PWP can self refer for physio and podiatry. It might be worth checking with your hospital.
if we can ''self refer'' why didn't i know that ??. and as moon and stars said "I keep being told there is a multi disciplined team to offer support .....BUT WHERE ARE THEY???", what else are we supposed too "self refer" too??.
And if we are supposed too ''self refer" for what ever ailment do we have too spend the session explaining ourselves and PD??. if i self refer for a physio will i see someone dedicated too PD or someone more used too seeing a slipped disk and a sunday morning football injury?. surely that is where the neuro or pd nurse steps in too get us too the right person via referral.
I think PUK should really look into the benefits, or not, that PSN provide to those with Parkinsons. So much money has been raised to fund these positions, so much publicity when an area has a PSN appointed, that it beggars belief that it seems that they are not functioning in our best interest.
Surely a telephone call 2 or 3 times a year is not too much to ask, to see how things are, which may even prevent an emergency phone call and visit. Even requesting a visit can take weeks.
Should they be sitting in on every clinic appointment, unless the patient has asked for that to happen? OR, could their time be better spent out in the community supporting PWP that need them??? before a crisis happens?
I received an appt to see PD nurse before I'd been diagnosed which at the time was a bit of a shock and I couldn't really understand this . I cancelled the appt . It was on my birthday .i then received a phone call from her to ask why I'd cancelled at 830 in the morning .i was trying to get my daughter off to school . This threw me as my daughter had little idea at this point and I thought she could have phoned later . When I first met her she gave me the diagnosis as my results had actually been sent to wrong Gp . Someone I had never been registered with . I felt it wasn't explained well . I wasn't sure what the scan result meant . I also felt the nurse was quite blasé about it all . She said she would see me in four months time it was nearly eight . No follow up phone call in that time . Just a hello and how are you would have meant a lot . I was really struggling and I felt like I had been left to get on with it . I worked in palliative care for ten years . We had training in the breaking of bad news and did do follow up phone calls and visits in the community . I asked if the PD nurse had got any literature on PD at my appt and she said no ring PUK ?? . There is no working age support group in my area yet there are several of us apparently .why ?? Surely the PD nurse should have set one up . They are clinical nurse specialists and I'm sorry if it sounds harsh but their wages reflect this .
the pd nurses on this site are fab. They work six days a week and cover evenings. You ring in leave your name and phone number. The nurse will then ring you that day or the next. On the three occasions I have rang I found them very helpful. The first time I was on the phone talking for an hour, there is no limit to how often you ring
sea angler would it be worth ring the hospital and see I there is a booking centre for appointments. Where I live in Wales there is one. I had not had an appointment like you so rang them and said name of neuro and the fact she wished to see me - I booked then and there. Have done this twice. What I find is in clinic they say what they will do but don't follow up. I found secretary unhelpful
I agree, Sea Angler, the multi disciplinary team doesn't seem to exist. Each hospital trust is different and it seems to be left to the PWP to find out what is available but it shouldn't be that way. When I was diagnosed I was told nothing about Parkinson's, I had to find information via the Internet, but not everybody has Internet access.
I was fortunate that I was referred to physio by my neuro at diagnosis and consequently told I could self refer in future if I needed to. My local hospital has a rehab physio section catering for people with long term conditions, but not specifically Parkinson's. The last physio I saw asked if I would always need to take medication!
For 10 years we only had contact with the neuro and GP.
We had no idea we could get help from other sources.
What I would like to see for newly diagnosed PWP is a leaflet outlining contact details of PDUK ,and local contact details ,plus how they can help, and referral procedures for:
neuro
physio
speech therapy
local PD group
expert patient programme
counselling
I am sure others can suggest more sources of help.
So many of just have to stumble around finding help (or not) as best we can.
When I got dx I seen pd nurse just weeks after and she told me how to get in touch pdsw seen by nero every six months can get hold of pd nurse easy maybe it goes on where you live
My Initials year of birth and first name thought I had a new twin almost then as you even use Kind Regards the only give away is I live in England found the whole thing rather intriguing at first.
yes very odd, nope not twins you are too glam:). But I was born in England!!!
has anyone got any tips re the horrible feeling when medication wears off, headaches and dizziness and anxiety
one minute I feel ok ish and managing and then the depths of despair. Finding evenings really hard, I vibrate, feel restless and unwell. I have also started to feel like this when I wake up, I feel as though I am on a boat. Think medication needs reviewing
in the day when I feel more ok I can walk six miles - odd
Parkinson's and you, which is our guide for people new to the condition, lists all the health and social care professionals that should be involved in a person's care and how they can help. It also gives details on how your GP, specialist or Parkinson's nurse can make referrals to these professionals and that, in some areas, you can refer yourself.
Unfortunately, we can't give specific details on referral procedures in local areas, because they, and the services available, vary across the UK. But we do give details on how you can get in touch with your local information and support worker, who can provide information, and links to, your local services.
I hope this is helpful. If you have any more queries about resources please do get in touch at [email protected]
