At my last appointment to my local hospital where i see my PD consultant of which was some 2 years ago . My consultant asked me if i would take part in a survey which they were making which was mainly yappers (young people with pd ) in another hospital some 45 miles away. Now me being 50 and not looking at myself as a young parkinsonian plus having no family transport close to hand & the 45 miles distance, i declined the offer,my consultant was ok about it and fully understood my situation.
Now my normal appointments are once a year, and time was well over a year, we enquired with the secretary of my consultant as to where and when my yearly appointment was, only to be told , since we didnt take the last appointment ( to the 45 mile away research hospital) that we wudnt be needing yearly appointments any more !! and thus crossing me off the list grrrrrr !! how they could do this with PD being a long term illness i really couldnt beleive, we explained the situation to the secretary with her saying that theres no yearly appointments only monthly i was and still am totally baffled.we then contacted my GP explaing again the situation, even he was a little gobsmacked and said he would sort it by writing to my consultant and getting my normal local appointments re attached to me.
2 years have gone by so my wife said one more week and again we shall phone to find out whats happening to my appoitment hence in the post 2 appointment letters came, both from the hospital 45 miles away .....one was dated 27 june but regretting due to unforeseen circumsatnces had to be cancelled and the other dated 4 july. grrrrrrr !! so yet another phone call has to be made to firstly my GP, Then my consultants secetary, then probably the consultant and then the 45 mile away hospital to cancel that appointment geeeeeeez thats going to cost a fortune in phone calls and ofcourse with no wage coming into the house we are loaded "NOT"..... Seems to me they dont like me declining the research hospital appointment and just pushed me to one side. i am bouncing , had a gutsfull, as if my PD isnt enough problems without these people making life harder, my wife wont let me near a phone because she knows ill loose my temper, and the air will be blue, so im hoping these phone calls to be made monday will get all this sorted........Just wondering if any of my fellow parkinsonians have had similar problems ??
P.S. this is my 18 year with PD and when i was a younger parkinsonian i done every research survey available, was guinea pig on more than one occasion also had one of the first "hole in the head wide awake " brain ops back in the early 90s so its not that i havnt done my bit as a yapper but im not up to it these days
This does sound appalling Welshbear. What about sending a copy of this post to all concerned. Don't know if this is a good idea but to me it seems like it would be useful feedback. However I have little or nothing to do with these people yet so others may advise you against this.
Reading your post re appointments is quite a concern as this is happening to my husband since he went into the nursing home and all I get from phone calls is It's on his desk and I will remind him, My husband hasn't seen the consultant since September and when we did see him I was taken aback by the whole meeting which I have to say we haven't had to encounter for several years. My husband and I were part of yappers and he also had the brain operation while awake, I must say it did stop the dyskensia which was a relief after 11years of suffering we got to the stage of not being able to go in the car at all.
I have also found out that the clinic which was so good for us eventually is now going to be changed to just an outpatient one where as it used to be a movement disorder clinic where you would see all the therapists in one go which was so helpful to everyone.
I think it would be a good idea to let national office know and see what they can do about it.It is such a shame as we all worked so hard to get good treatment and it looks as if this is going to be lost, I hope not.
Absolutely disgraceful. Is there no way you can switch to another PD specialist?
I suppose not if the nearest appointment is 45 miles away. I have a friend who has had rheumatoid arthritis (not responsive to any meds.) for over thirty years and now that her lovely specialist retired the new one is completely uninterested in her many r.a. related afflictions, the latest being chronic anaemia. Not even the GP can get a reply to his phone calls. How such people sleep at night is beyond me. I think it would be well worth contacting the helpline at the top of this page as they may well have some ideas. For example a friend of mine who was dx in his early fifties was treated for a good while by a geriatric specialist (I know!!!) with a special interest in PD and in fact found her much more helpful than the "proper" neuro he went to later. It might be better than nothing.
Best of luck
I'd go along with the 45mile treck to the other hospital. Make the appointment, then ask the hospital for transportation you might get a helicopter or an ambulance or a humble taxi. All at the taxpayers expense. Well done the NHS.
Just imagine getting prince William, our future king, being called away from helpin sheep who have fallen off a cliff and being diverted to you to take you to your appointment. Just to get told "keep taking the tablets".
I'd take a packed lunch or even a picnic basket, make a day of it.
Have a meal and send them the bill. (don't go overboard cos they won't pay it).
Our beloved NHS is as brilliant as it is barking mad.
I had the privilege of speaking to four secretaries covering one department, neither of whom could make an appointment, phone me back and tell me how i make an appointment, all this over a three day period. Before trying to put me through to a nurse, failing and giving me the number and telling me to try getting through myself as "they all seem to have gone home an hour early". I finally spoke to a nurse who took a note of my predicament, passed it to a doctor and ten days later sent an appointment out ten days hence.
At my appointment there was a nurse who's job it was to wander up and down the long corridor between the nurses station and the consulting rooms. At one point she came down looked around. Saw my folder, rummaged in her pockets, walked all the way back up, all the way down carrying a pen, something on the front of the file and toddled away again. On the way out I heard her tell a nurse she'd "been on her feet all day".
With all these cutbacks it won't get any better. How much is common sense? They need to employ professional patients or make an 'undercover boss' type program.
Having said all that the care I received when I was in hospital recently was second to none.