Hi,
Good question Lorna,seems that you ask Ray and another Raydar47 answers.I think all those who have suffered so much should voice their grievances at such events.In fact Ray should be right at the front proudly holding the banner.If it means so much those shouting the loudest should find away no matter what.
ALL THE BEST
TITAN
Silly boy.
T: Still awaiting responses to my queries on 3/7 at 11.38.
Oh dear, I seem to have rattled Titan's cage again.......
Sorry Lorna I was popping in and out of the forum while on Skype to family did not read that the question was for Ray, note to self, read post twice before jumping in.
Radz
Sorry Lorna I was popping in and out of the forum while on Skype to family did not read that the question was for Ray, note to self, read post twice before jumping in.
Radz
Hi Radz.
Re: My email about the Northampton case, this link is to the report in the local press.
Paul Barber was on Cabergoline.
There are several other reports about it if you want to Google around.
http://www.northamptonchron.co.uk/news/local/arsonist_dies_after_prison_fails_him_1_894222
Ray. x
Re: My email about the Northampton case, this link is to the report in the local press.
Paul Barber was on Cabergoline.
There are several other reports about it if you want to Google around.
http://www.northamptonchron.co.uk/news/local/arsonist_dies_after_prison_fails_him_1_894222
Ray. x
hi Lorna,titan,Ray and others
I am now involved with the Parkinson's UK Steering Group referred to on the home page of this website. PUK is running a campaign to raise awareness on this issue. We had our first meeting in London 10 days ago which highlighted a number of concerns. One of the biggest for me being, this problem is not just confined to a lack of knowledge and awareness among a few Neurologists? I was shocked too discover a significant number of PwP don't even have access to a Neurologist. They are prescribed dopamine agonists and other PD medication by Physicians such as Family doctors and Geriatricans etc. Furthermore if we think there is a need to raise awareness among neuro's, then believe me an even greater effort is needed to improve knowledge and raise awareness among other types of physicians who can prescribe DA's.
Once the minutes from the meeting have been produced and the action plan updated, i will ask PUK to publish it on the forum so that everyone is kept informed of what we are doing.
best wishes
bluey
I am now involved with the Parkinson's UK Steering Group referred to on the home page of this website. PUK is running a campaign to raise awareness on this issue. We had our first meeting in London 10 days ago which highlighted a number of concerns. One of the biggest for me being, this problem is not just confined to a lack of knowledge and awareness among a few Neurologists? I was shocked too discover a significant number of PwP don't even have access to a Neurologist. They are prescribed dopamine agonists and other PD medication by Physicians such as Family doctors and Geriatricans etc. Furthermore if we think there is a need to raise awareness among neuro's, then believe me an even greater effort is needed to improve knowledge and raise awareness among other types of physicians who can prescribe DA's.
Once the minutes from the meeting have been produced and the action plan updated, i will ask PUK to publish it on the forum so that everyone is kept informed of what we are doing.
best wishes
bluey
Thanks for both the update and volunteering, Bluey.
As far as I'm aware any qualified doctor can prescribe anything, as soon as they complete med school, but I'm not certain. However, assuming that every single GP doesn't have an in-depth knowledge of every single specialty and condition, let alone an up-to-date understanding of every drug which can be used in that field and the status of current research, one might have presumed purely by using a little common sense that once a GP suspects he might have a possible case of PD in front of him, he'll refer the patient to an experienced Consultant Neurologist specialising in PD.
The trouble is that after years and years of adulation and being feted, many an arrogant and cocky GP starts to believe his own slick image, and concludes that he knows the score, so why bother his busy, overworked consultant colleague? He then (very professionally-looking) logs into Google or somesuch, finds out which PD drug is getting the most publicity lately, slaps it onto a prescription and pompously shows you the door. No explanation, no warnings, nothing.
Thereafter, if you're lucky, you'll get an appointment every 6 months at the Movement Disorder Clinic, and hopefully be seen by a proper PD Nurse, who unfortunately "won't have much time for you today I'm afraid, we're SO busy!"
For my own part I went to the Clinic in 2007, immediately after discovering (by myslf) that the DAs I'd been fed for 7 years were the cause of why I'd been acting crazily all that time. I was seen by a consultant geriatrician who was acting as a locum in Movement Disorders due to staffing problems. To my surprise he knew all about the DA/OCD issue, and took me off them straight away - reversing the previous decisions by the consultant to whom I was assigned. He agreed a new, non-DA drug regime with me (despite protests from my regular two PD nurses), and told me to wait a couple of weeks before starting the new stuff (Sinemet), to allow my body to clear.
Since then I have never been seen by any consultant, from any specialty. That's four years so far. Given that they all knew about the OCD problems I'd been having (at a subsequent visit one of the PD nurses actually produced a copy of our local paper, with a 5-page spread about me - including the whole of the front page - and read it out loud at the nurses' station, laughing), you'd have thought they'd now want to watch me very closely, but no. Couldn't be less interested.
Back to the thread. I guess I was lucky in the beginning to have been seen by a consultant neurologist at all. Oh no, I forgot: I got THAT appointment because I was on BUPA. In that case I guess I was lucky to have my drug regime evaluated and recommended by a proper neurologist. Oh no, I forgot: he put me on Cabergoline for 7 years.
Perhaps I would have been better off staying put with my GP, who was excellent.
Where that leaves us with the current debacle I've no idea. There's no coordination going on in the NHS regarding consultants' responsibilities, that's for sure. Why should we put in a huge effort making consultants better aware if the prescribing is being done by under-qualified (imho) GPs and out-of-specialty locums? Why should we even try to educate GPs who arrogantly ignore advice anyway?
And how do we track down those old-timers like me who are STILL out there taking DAs and suffering serious OCDs without knowing why? People who may have been put on their DAs a decade ago, and to whom no-one's ever returned to warn them of developments since then.
Good luck Bluey! I don't envy you, but admire your courage.
Ray.
As far as I'm aware any qualified doctor can prescribe anything, as soon as they complete med school, but I'm not certain. However, assuming that every single GP doesn't have an in-depth knowledge of every single specialty and condition, let alone an up-to-date understanding of every drug which can be used in that field and the status of current research, one might have presumed purely by using a little common sense that once a GP suspects he might have a possible case of PD in front of him, he'll refer the patient to an experienced Consultant Neurologist specialising in PD.
The trouble is that after years and years of adulation and being feted, many an arrogant and cocky GP starts to believe his own slick image, and concludes that he knows the score, so why bother his busy, overworked consultant colleague? He then (very professionally-looking) logs into Google or somesuch, finds out which PD drug is getting the most publicity lately, slaps it onto a prescription and pompously shows you the door. No explanation, no warnings, nothing.
Thereafter, if you're lucky, you'll get an appointment every 6 months at the Movement Disorder Clinic, and hopefully be seen by a proper PD Nurse, who unfortunately "won't have much time for you today I'm afraid, we're SO busy!"
For my own part I went to the Clinic in 2007, immediately after discovering (by myslf) that the DAs I'd been fed for 7 years were the cause of why I'd been acting crazily all that time. I was seen by a consultant geriatrician who was acting as a locum in Movement Disorders due to staffing problems. To my surprise he knew all about the DA/OCD issue, and took me off them straight away - reversing the previous decisions by the consultant to whom I was assigned. He agreed a new, non-DA drug regime with me (despite protests from my regular two PD nurses), and told me to wait a couple of weeks before starting the new stuff (Sinemet), to allow my body to clear.
Since then I have never been seen by any consultant, from any specialty. That's four years so far. Given that they all knew about the OCD problems I'd been having (at a subsequent visit one of the PD nurses actually produced a copy of our local paper, with a 5-page spread about me - including the whole of the front page - and read it out loud at the nurses' station, laughing), you'd have thought they'd now want to watch me very closely, but no. Couldn't be less interested.
Back to the thread. I guess I was lucky in the beginning to have been seen by a consultant neurologist at all. Oh no, I forgot: I got THAT appointment because I was on BUPA. In that case I guess I was lucky to have my drug regime evaluated and recommended by a proper neurologist. Oh no, I forgot: he put me on Cabergoline for 7 years.
Perhaps I would have been better off staying put with my GP, who was excellent.
Where that leaves us with the current debacle I've no idea. There's no coordination going on in the NHS regarding consultants' responsibilities, that's for sure. Why should we put in a huge effort making consultants better aware if the prescribing is being done by under-qualified (imho) GPs and out-of-specialty locums? Why should we even try to educate GPs who arrogantly ignore advice anyway?
And how do we track down those old-timers like me who are STILL out there taking DAs and suffering serious OCDs without knowing why? People who may have been put on their DAs a decade ago, and to whom no-one's ever returned to warn them of developments since then.
Good luck Bluey! I don't envy you, but admire your courage.
Ray.
Im suprised that our most active posters sometimes have such a narrow window of current information keep up boys [im joking] But read it its a must
July 2011 saw a publication regarding local adult neurology services for the next decade.
The working party of physicians and neurologists from the respective Royal Colleges
It proposes many changes,but identifies a lack of funding to provide core services.
Better organised care for patients with long-term neurological conditions, managed in part using specialist nurses and general practitioners with a special interest in neurology.This is the only real option,but will like everything need funding in brief it will address the fundamental problem of a lack of neurology specialists and national care inequalities
Over the next decade,we will require an increase in consultant UK neurologists from 600 to 880 .The problem in achieving this is funding the training posts
Fact
‘very few neurological in-patients are even seen by a neurologist
The report is available free of charge on the internet
http://www.rcplondon.ac.uk/press-releases/neurology-services-not-meeting-patients%E2%80%99-needs
July 2011 saw a publication regarding local adult neurology services for the next decade.
The working party of physicians and neurologists from the respective Royal Colleges
It proposes many changes,but identifies a lack of funding to provide core services.
Better organised care for patients with long-term neurological conditions, managed in part using specialist nurses and general practitioners with a special interest in neurology.This is the only real option,but will like everything need funding in brief it will address the fundamental problem of a lack of neurology specialists and national care inequalities
Over the next decade,we will require an increase in consultant UK neurologists from 600 to 880 .The problem in achieving this is funding the training posts
Fact
‘very few neurological in-patients are even seen by a neurologist
The report is available free of charge on the internet
http://www.rcplondon.ac.uk/press-releases/neurology-services-not-meeting-patients%E2%80%99-needs
Hi Ray,
You asked for a response to your posting on 3 July 11.38.
Firstly i have made an observation,i have voiced it,as you have voiced yours.Yet you now need me to confirm that which you have voiced.I will try to make it brief.
Well firstly,i am not an imbecile,i do have parkinsons myself.[This post has been edited by moderators because it does not comply with our forum guidelines. You can find the guidelines here: http://www.parkinsons.org.uk/forum-terms-and-conditions/forum-help/forum-user-guidelines.aspx].Two people were involved who clearly understood the process,yes they were as one on that.
answers to 1-4
1.Still odd to me
2.Still unusual
3.False as Wifes eyelashes
4.Guts is what it takes to put yourself where your mouth is.
Everyone can view this forum[edited] I need no evidence to voice an opinion.[edited] Hope this answers your question
all the best
Titan
You asked for a response to your posting on 3 July 11.38.
Firstly i have made an observation,i have voiced it,as you have voiced yours.Yet you now need me to confirm that which you have voiced.I will try to make it brief.
Well firstly,i am not an imbecile,i do have parkinsons myself.[This post has been edited by moderators because it does not comply with our forum guidelines. You can find the guidelines here: http://www.parkinsons.org.uk/forum-terms-and-conditions/forum-help/forum-user-guidelines.aspx].Two people were involved who clearly understood the process,yes they were as one on that.
answers to 1-4
1.Still odd to me
2.Still unusual
3.False as Wifes eyelashes
4.Guts is what it takes to put yourself where your mouth is.
Everyone can view this forum[edited] I need no evidence to voice an opinion.[edited] Hope this answers your question
all the best
Titan
Evening all, just another quick visit,
Is really bad Diarrhea or diarrhoea, depending on how you spell it!
a symptom of coming off DA drugs?
Radz
Is really bad Diarrhea or diarrhoea, depending on how you spell it!
a symptom of coming off DA drugs?
Radz
Titan and Ray,
whether intentional or not, you pair are great entertainment. i thought that one of the points of this site was that we are at least swimming the same direction and the same stroke. You bicker like a married couple.
hey ho.
mrs.t.
whether intentional or not, you pair are great entertainment. i thought that one of the points of this site was that we are at least swimming the same direction and the same stroke. You bicker like a married couple.
hey ho.
mrs.t.
I am interested in the concept of funding for neurology specialists. Given that they are first required to have gained a qualification in medicine (5+ years) then a 2 year Foundation programme or a post-graduate training programme(4 years)
where is the funding injected? Is it for research? For a higher degree?
Funding for nurse specialists makes more sense to me
where is the funding injected? Is it for research? For a higher degree?
Funding for nurse specialists makes more sense to me
mrs.t.
Thanks for your comments,Ray and i tend to do this from time to time.Not Bickering though,just answering Rays request for answers.I gave them,however large chunks were edited for some reason.
I actually said nothing nasty,diden,t swear,diden,t use angry tones.The editing gives the impression that i was abusive.Would like to put this straight.
I actually have the exact copy of what i said saved,and read through it wondering what is going on,when a posting is chopped to bits,making that person look horrible.When in fact he was just voicing an opinion.
All the best
Titan
Thanks for your comments,Ray and i tend to do this from time to time.Not Bickering though,just answering Rays request for answers.I gave them,however large chunks were edited for some reason.
I actually said nothing nasty,diden,t swear,diden,t use angry tones.The editing gives the impression that i was abusive.Would like to put this straight.
I actually have the exact copy of what i said saved,and read through it wondering what is going on,when a posting is chopped to bits,making that person look horrible.When in fact he was just voicing an opinion.
All the best
Titan
Furthermore,
I am no prude,however i do find it ironic that references to drugs(weed),are allowed to stay when valid points of view are not.
Well,its no wonder ive been wandering
All the best
Titan
I am no prude,however i do find it ironic that references to drugs(weed),are allowed to stay when valid points of view are not.
Well,its no wonder ive been wandering
All the best
Titan
Hi Titan, great to hear from you.
I'm sorry I don't have much spare time to devote to Bunter banter, but I've got several pots on the go at once at the moment, and they all need to be carefully monitored. Outcomes are critical to those involved - I'm sure you'll understand.
Freedom of speech is precious, and the forum allows us both as big a stage as we want. With such resources available to us everybody should be perfectly happy.
You with your supporters and lost cause, dragging your torn and muddied flag along the floor defiantly, like the few remaining Lincoln City supporters traipsing down Relegation Road. Me with my Red Devils, trophy aloft, marching steadily forward with our wealth of experience of what OCDs are really like, backed up by scores of true-life cases and catalogue of individual disasters, surrounded by supporting pharmaceutical research and the learned opinions of the medical, legal and scientific worlds.
You argue your theories competently but they remain just theories - however much thought you put into them and however logical they seem to you. We, on the other hand, aren't just playing at it. We've been there, done it and got the T-shirt, collecting survivors along the way, but also witnessing horrors beyond belief.
Take care,
Ray.
I'm sorry I don't have much spare time to devote to Bunter banter, but I've got several pots on the go at once at the moment, and they all need to be carefully monitored. Outcomes are critical to those involved - I'm sure you'll understand.
Freedom of speech is precious, and the forum allows us both as big a stage as we want. With such resources available to us everybody should be perfectly happy.
You with your supporters and lost cause, dragging your torn and muddied flag along the floor defiantly, like the few remaining Lincoln City supporters traipsing down Relegation Road. Me with my Red Devils, trophy aloft, marching steadily forward with our wealth of experience of what OCDs are really like, backed up by scores of true-life cases and catalogue of individual disasters, surrounded by supporting pharmaceutical research and the learned opinions of the medical, legal and scientific worlds.
You argue your theories competently but they remain just theories - however much thought you put into them and however logical they seem to you. We, on the other hand, aren't just playing at it. We've been there, done it and got the T-shirt, collecting survivors along the way, but also witnessing horrors beyond belief.
Take care,
Ray.
Mrs T.
Well done and congratulations!
You are the first to suss out the fact that we are actually Morecambe and Wise reincarnated.
I'm Wise, of course. Titan is just a seaside clown.
Ray.
Well done and congratulations!
You are the first to suss out the fact that we are actually Morecambe and Wise reincarnated.
I'm Wise, of course. Titan is just a seaside clown.
Ray.
Ray,
Every seen "It" Ray.
Every seen "It" Ray.
R and T,
I am somewhat concerned that what we write is edited, by whom and for what purpose? Surely we can be self regulating?
T, I agree: weed ok, opinions not.
What the hell?
And in an age when any nosy git can hack in to any ol' mobile, sorry only those of possible murder victims.
mrs.t.
I am somewhat concerned that what we write is edited, by whom and for what purpose? Surely we can be self regulating?
T, I agree: weed ok, opinions not.
What the hell?
And in an age when any nosy git can hack in to any ol' mobile, sorry only those of possible murder victims.
mrs.t.
Very profound, Titan. Suggest you save your spare energy for your bookie.
Given that you've been winning so consistently for over 20 years I'm amazed he hasn't barred you yet......
Given that you've been winning so consistently for over 20 years I'm amazed he hasn't barred you yet......
well, I will leave this thread , to those with more knowledge & experience & therefore less time to answer Q's from the uneducated