Thank you, Alison.
I was trying to make the point that we needed a LOCAL guide as the situation varies so much across the country.
It is clear many PWP do not know about the self referral policies in their area.
We are only just accessing a range of supportive agencies after nearly 15 years!
GG
I have too agree LOCAL and not only that written but not within a article a clear dedicated list would be more help than anything, i don't know about anyone else but my mind struggles with reading and remembering things other than events.
hi all of you,
the PD nurses are very good on this site just as Karen said. I would urge anyone who does not have their own local nurse to call them. their advice is invaluable and they can help with the self referral issue.
KAREN i am curious now where was you born in England?
BBX
Hi bettyblue
Bristol. Are we twins? X
London Dec 10th 1965 might be lol xx
On reading these posts, I realise how fortunate I am - if having PD can ever be called fortunate! When I went to my GP about a slight tremour in my hand, she immediately referred me to a consultant. This consultant's special interest is PD. Since being diagnosed exactly one year ago, I have seen him once every six months and the PD nurse once every six months, so I see someone every three months. Initially I had a real prob with the medication. The consultant's secretary was immediately reachable and he called me back within 2 hours. The PD nurses are always contactable. They job share and when I leave a message, they always call back that day. A big plus is that I feel both the nurses and the consultant listen to me. I have a wonderfully supportive husband and between the medical staff and him, I don't feel alone. Although I will say that initially, between seeing the consultant first time around and the diagnosis confirmation, I did feel abandoned. Parkinsons UK were superb and helped us through a very difficult patch, even having someone come out to visit us at home, to listen to us and to give practical and sympathetic support. Our local hospital offers limited services but in my instance, judging by reading the posts, I am receiving very good service and support. Long may it continue. It doesn't relieve my anger/dismay and so on at being diagnosed with PD but having the support certainly does relieve me of a lot of unnecessary stress and anxiety. The knowledge that I have people to talk to, to advise, to help is a huge weight off my mind.
Have just read through all the threads on this topic and would like to add my experiences.
Like some others, I was diagnosed by my neurologist and told he would see me in a year, but that the PD nurse would see me in 6 months time. Nothing else was mentioned..... just left to go home and deal with the devastating diagnosis alone. I found Parkinson's UK and this forum by accident. Unfortunately, I did not get on with my PD nurse and found her reports inaccurate and sometimes my medication wasn't even spelt correctly. My neurologist was sarcastic and didn't seem to realise the impact that Parkinson's has on your mental state. To cut a long story short, after 3yrs. and many bad experiences, I changed hospitals.
Before I left though, I did present my PD nurse with a list of useful people and information, including telephone numbers, that would be helpful to give to newly diagnosed patients. I know I would have benefitted from such a leaflet.
It seems it's very hit and miss as to our care, depending on where we live. Thank god for Parkinson's UK.
Twinks.
In early june i had an appointment with the neuro, he said i'll see you in 4 months,our Pd nurse retired in june during the appointment he mentioned making an appointment with the new PD nurse in the interim before his next appointment so I could meet her and bring her up too speed seamlessly with me.
Appointments letters with Neuro are supposed to go out within 6 weeks of the appointment so i was once told, so from june - sept 4 months is unlikely to be 4 months and more likely 6 months, the last one being from 4 months to 9 months.
Neither has happened.
Our support worker has also left, a new one has apparently been appointed, i neither know the name of both new support worker or PD nurse or contact details.
I pay 4 quid each year to be a member of Parkinsons Uk to be kept uptoo date nationally and locally I have received just One magazine in the last year from P uk. other than shopping items through the post in the last few weeks.
Does that Paint a typical picture?.
The only saving grace is a local working age group, where we wonder about each other and the above.
Inclined to Agree..... I read about a multi disciplined team of medical professionals assist me through this journey where are they?
You should be reviewed 6 monthly If not my suggestion is call your Neuro/ PD specialist secretary and tell them you need a med review ASAP.
Do this in a strong firm manner and do not be fobbed of.
take care stay safe bb xx
Hi
I live In Scotland and when i see my neurologist 3 months later i see my PD Nurse and then three months bacK to Neurologist.
I think i must be quite lucky with this.
I can also phone my PD nurse in between if i need to which is good.
Hopefully you get sorted soon.
Cheerio for now x
Well, after 18+ years and the PSN suggesting a referral to the multi disciplinary team some years ago, OH is now on this course soon. Probably too little , too late!!!!!! Earlier intervention might have been beneficial.
For anyone still struggling to be seen by your PD Nurse / Neuro/ PD Specialist.
You can insist on a change of hospitals you have to be very firm and basically put your foot down.
This is how I got myself referred to queens sq in London don't get me wrong the journey is tiresome and a pain in the butt. But seeing that queens sq is the neuro surgery centre of excellent why would I want to go any where else.
It is our rights to have the best medical care around I will not tolerate anything less.
Lincoln County is where I am under for my PD Queens Sq is just for my DBS. I get my reviews 6 monthly and in the meantime anything else occurs I call my specialist sec and ask to see the PD nurse. This year so far I have seen my specialist twice and the PD nurse 3 times.
PD Specialist is Profess Sharma and PD nurse David Smith. (Just in case any of you decide to transfer you care to Lincoln)
Take care & good luck BB. xxx
My GP willingly referred me to a different hospital, when I complained about the treatment I was getting from York. Transferred to Harrogate and so far greatly impressed.
Twinks.
It saddens me when I read of either lack of or poor treatment by PD Nurse Specialists not least because im privileged to have a great team taking good care of me, nothing is too much trouble and if I am suffering a horrible shutdown I ring up and a home visit is arranged if not that day then the next , all visits to me or me to N T G H North Shields, are a pleasure, respectful friendly,staff who are all knowledgeable and have really kept me in the land of the living when depression launches a suprise attack, so if you are unhappy with the help you receive change to another Hospital, do a bit research first and you can be in another standard of care within days.
FEDexlike
