I believe that Parkinson's UK should get together with a few neurologists and come up with a list of medications, and rules for their prescription, so that family doctors can make decisions themselves and only request assistance when they are out of their depth.
Peter,
You are correct, the wait is too long to see a Neurologist, the 4 month appointment is turning into 9 months and still no appointment date, as the Neuro is moon lighting in 'research'(it says so on his nhs profile) where the big $$$$ are, and i heard last time i went too see the PD nurse, a h.c.a say to another h.c.a attending to the appointments ''he doesn't want too patient appointments anymore''. well what about those waiting for an appointment?.
Confucious said " a man who chases two rabbits catches neither", but no doubt he catches 2 pay packets??.
Recently it was asked what are and should be the priorities for P.UK? one of the Top replies on facebook was more ''specialist parkinsons nurses'' and ''more access', they are the back bone of our care and thank god i have one and appointments with one, because quite frankly the rest sucks big time as a care package is non existent.
G.p's? i wouldn't trust them to stir the tea.
I hadn't seen my neurologist for 18 months, before my last appointment! I'm supposed to see him once a year. In the end I emailed his secretary, saying I felt neglected and hey presto, an appointment came through for the following week!
All surgeries should have one doctor who has at least attended a course about Parkinson's, given that several of their patients are likely to have it until they die.
Good idea about GP taking a course
I suspect GPs would not have time for a course and it would be an onerous task to keep up with developments. However, a web resource might be of help.
Peter.
Martini,
Unfortunately there are no rules when it comes to prescribing P meds. It's hit and miss as every PWP presents with different symptoms and reacts differently to all the various meds.available.
Our now retired GP told us that most GP's don't see enough PWP to even contemplate prescribing meds, OR to be experts on the condition ,and I agree with him. He said that he would go along with whatever our neurologist prescribed or suggested, and that is what we have done for 18 years. We trundled along with that in place for many years BUT things have changed recently.
It annoys me now when variations of meds, sent by letter from our neuro to the surgery, require the GP to ...............'review the meds', resulting in a delay in getting the prescription filled. I think that is a cost exercise and not any altruistic response by the GP, in any way. Perhaps the surgery is just trying to keep me, as a carer, fit, by making me trudge to the surgery or pharmacy every day for a week or more, which has happened frequently of late, to get what my OH requires
GP's, my OH never sees one so they are not au fait with his needs. Our neurologist IS!
A web resource would be rather like the faiiled NHS emergency number, IMO.
Hi Benji,
On reflection, you are probably right.
Peter.
This morning I received a call from my GP, asking if I would be wiling to help her out.
Apparently, our local hospital has asked if she would hold some tutorials for 4th.year Medical students wanting to study neurology. The Neurology dept. at the hospital is too busy and understaffed to accommodate these tutorials for the students.
Of course I jumped at the chance and will be going along to my surgery in March to meet them. Not only am I willing to talk to the students about Parkinson's, but also I shall be picking their brains about what they are taught of our condition. I see this as a great opportunity to inform my doctor and future doctors about some of the issues we face.
I mentioned in an earlier post, that doctors need to know more about Parkinson's..........so I'll be telling them!!!
Twinks.
Excellent Twinks. More of this is needed, IMO.
I agree with Martini's original view that best practice guidelines for prescribing for PD would be useful. I would take it one step further, and let trained PwP working together with GPs, and with the help of the guidelines, decide on drug regimens. Consultants would still be used for difficult cases, especially those concerning a possible change of diagnosis.
It's all very well having a world class neurologist, but he/she is pretty useless if you can't get to see them.
PD lends itself to patient involvement because it lasts for so many years; giving us plenty of time to get up to speed.
John
totally with you all on this, you wait forever for an appointment, get started on a new regime of medication, only to find out within a fortnight that its unsuitable for you, then you're back on the band wagon, waiting for another 6 months to try again. i really don't think non PD sufferers can in anyway relate to how desperate this bl***y disease makes you feel !!
Quick update. I've helped out with 2 tutorials at my doctor's surgery now. Each time, there were 4 fourth year neurology students attending, plus my GP. Before I went into the room, my GP told me not to mention my condition. She wanted the students to ask me questions and make their own diagnosis. I have no tremor and no real visible signs of Parkinson's, to the casual observer and I was amazed at how long it took them to diagnose my condition. They then examined me and did some classic tests for PD and asked me loads of questions. Fortunately I'd written a sheet about my journey with Parkinson's so far, which they found interesting. I also supplied information about the different stages and medications, plus several leaflets and booklets from PDUK. ( Once a teacher, always a teacher, I'm afraid!! )
I am so willing to do this, as my GP gets an update and information on my condition as well. She also gets to hear my thoughts about having Parkinson's, which I normally never get time to talk to her about, at my 10min. appointments. My services are required again in September, apparently, so I'll be going again.
I end these sessions, by asking them to consider specialising in Parkinson's as there is such a shortage of doctors in this field. One response I got was, 'Oh no, we'd be terribly overworked then' . That's students for you!!
All the best to everyone.
Twinks.
Thats sounds like a good game too play Twinks , we could all go to our local Gp surgery and Play 'whats up with you'?? with the non aware of Parkinsons, lol
Hahaha.......I like your thinking!
Hellos
i've been reading your posts and find what you have to say, is very interesting.
I don't think I get to see my consultant for as long as I would like to. I wait for six months.at a time and when I do get called in, I have to tell my story to one of the registrars who I've never met before.
He considers all I have told him then he says that he thinks we should keep things how they are and see how. I've managed for the last six months.
Hi Casie,
That must be so frustrating, seeing someone different each time. Is there a PD nurse who can get to know you and provide some consistency? We need continuity and trust in the experts who deal with our condition. I recently changed hospitals for that very reason. Perhaps joining a local support group might help. Unfortunately we are left to do our own research into what is out there and find out what Parkinson's means.
Make your voice heard and good luck.
Twinks.
Hi Twinks
Many thanks for your comments. Your right. You do have to speak out. I just feel that it is so disappointing to have felt really terrible for a greater part of the previous 6 months but come away looking forward to what lies ahead in the 6 months to come - not.
I've had PD for 16 years and it "sure ain't getting any better!".
There is a Specialist PD Nurse but my husband usually speaks to her about any changes in meds, etc. As he has taken over talking to her more than I do, I don't feel she is there 'for me'.
That might sound a little childish but that's how I feel.
Anyway - I've bought us a chocolate cream cake for tea. I'll have to wait until later to worry about it.
All the best.
Casie
