I am sorry that fewer than 500 signatures were received for a
petition to parliament about the restriction some PD sufferes have to 28 day repeat prescriptions but as I have only just navigated myself to this topic and having posted my reply in the wrong place and not being able to find/search for the topic I have copied and pasted below my comments
I feel sure that another go and posting it under as many topic areas as possible might get better results at a later date.
I am subject to the 28 day rule but fortunately I am well ahead with stocks of meds.but it wouldn't do to let on that I have a reserve of more than 5 days tabs.which I am informed they think is adequate with the consequent totally unnecessary recurrent upset that would cause if the chemist was out of stock.
I am amazed to find out that we could not raise 500 signatures between us. I know for a fact that I had at least 20 friends sign, none of whom are members of this forum.
We are in the position now of crossing our fingers that a precription will be available tomorrow because the date that it would be due is December 28th, designated a Bank Holiday.
Added to thst is, the pharmacy regularly has to order it in for the next day, despite it being a regular request.
Surely this could be taken up with the society and when they send out their literature/magazine, enclose a form to be returned to support the efforts that suwils went to.
I am quite speechless.
We are in the position now of crossing our fingers that a precription will be available tomorrow because the date that it would be due is December 28th, designated a Bank Holiday.
Added to thst is, the pharmacy regularly has to order it in for the next day, despite it being a regular request.
Surely this could be taken up with the society and when they send out their literature/magazine, enclose a form to be returned to support the efforts that suwils went to.
I am quite speechless.
Well,the response,(non),to my post of 6 hours ago speaks volumes as to the support on here for suwils petition.
No wonder we could not gather 500 signatures in the alloted time!
Hope that you all feel very pleased with you apathetic response.
OK administrator, you can delete my tirade now, I really don't care.
Suwils made the ultimate effort and I think I supported that to the best of my abillity. If the rest of the posting members cannot do the same, then why are they on this forum?
No wonder we could not gather 500 signatures in the alloted time!
Hope that you all feel very pleased with you apathetic response.
OK administrator, you can delete my tirade now, I really don't care.
Suwils made the ultimate effort and I think I supported that to the best of my abillity. If the rest of the posting members cannot do the same, then why are they on this forum?
Hi Benji,
Pity you so upset Christmas Week. There is a point that you have completely overlooked not all of us live in the UK.
Happy Christmas
Tulip
Pity you so upset Christmas Week. There is a point that you have completely overlooked not all of us live in the UK.
Happy Christmas
Tulip
Maybe Tulip, but the link was not limited to UK responses, as far as I know.
Anyone can access a posted link, can't they?
Anyone can access a posted link, can't they?
Hi EileenPatricia and Benji,
I am afraid I must have had my head buried in the sand, for I did not know there was a petition to reject the inappropriate 28 day rule for repeat prescriptions.
I have been disqualified from driving on the assessment by the DVLA and hence the government, that I have a 'progressive neurological condition'.
This surely contradicts not only the reasoning behind the 28 day rule, but also that we are still required to pay prescription charges, as is the present case, in the first place!
I am sure that many people with PD like me, are astounded that they haven't known about the petition and acted to support the motion.
I can only apologize for my ineptitude!
Regards, Cecily.
I am afraid I must have had my head buried in the sand, for I did not know there was a petition to reject the inappropriate 28 day rule for repeat prescriptions.
I have been disqualified from driving on the assessment by the DVLA and hence the government, that I have a 'progressive neurological condition'.
This surely contradicts not only the reasoning behind the 28 day rule, but also that we are still required to pay prescription charges, as is the present case, in the first place!
I am sure that many people with PD like me, are astounded that they haven't known about the petition and acted to support the motion.
I can only apologize for my ineptitude!
Regards, Cecily.
Benji,
How many people did you expect to log on, read your post, and have time to consider it properly and respond appropriately during a 6-hour period between 4.30pm anf 10.30pm UK time on a Tuesday 3 days before Christmas?!
And why do you assume that everyone will see the issue as cut and dried as you do, and that the only reason they're not signing up is apathy?
I certainly WAS aware of the petition, but gave my reasons for not signing up as soon as it started. These were:
1. Doctors have been asked by the government via guidelines to help cashflow (and pharmacy stockholdings) by only prescribing 28 days' supply at a time, where possible. This guideline is NOT an instruction, though, and GPs can ignore it if they wish. In my opinion there is absolutely NO way any government would rescind this guideline, and increase short-term costs, just before an election. Such a petition/campaign would - at the moment, if not always - fall by the wayside.
2. EVERY single GP, if he/she has the gumption. can prescribe for longer periods if they believe it appropriate. In my area I'd say about 30% are happy to prescribe 3 months' worth at a time, so at a personal level it's not a problem for me. All you need to do is be a bit more assertive with your own doctor, i.e. become a right pain in the backside until he/she relents and gives you the increased amount. I'll bet those patients who shout loudest get what they want, if they put their mind to it!
How many people did you expect to log on, read your post, and have time to consider it properly and respond appropriately during a 6-hour period between 4.30pm anf 10.30pm UK time on a Tuesday 3 days before Christmas?!
And why do you assume that everyone will see the issue as cut and dried as you do, and that the only reason they're not signing up is apathy?
I certainly WAS aware of the petition, but gave my reasons for not signing up as soon as it started. These were:
1. Doctors have been asked by the government via guidelines to help cashflow (and pharmacy stockholdings) by only prescribing 28 days' supply at a time, where possible. This guideline is NOT an instruction, though, and GPs can ignore it if they wish. In my opinion there is absolutely NO way any government would rescind this guideline, and increase short-term costs, just before an election. Such a petition/campaign would - at the moment, if not always - fall by the wayside.
2. EVERY single GP, if he/she has the gumption. can prescribe for longer periods if they believe it appropriate. In my area I'd say about 30% are happy to prescribe 3 months' worth at a time, so at a personal level it's not a problem for me. All you need to do is be a bit more assertive with your own doctor, i.e. become a right pain in the backside until he/she relents and gives you the increased amount. I'll bet those patients who shout loudest get what they want, if they put their mind to it!
Hi guys,
With regards to the repeat prescriptions once i get a prescriptions from my neurologist be it at one , two , three or six monthly intervals i can call to my pharmacy at any time and collect whatever i need I have absolutely no problems whatever.
I was a little upset tonight did any of you see the late news where the lady was requesting PD suffers to donate their brain to science to aid a cure for PD, I don't know why but I just felt in despair for a short time.
Tulip
With regards to the repeat prescriptions once i get a prescriptions from my neurologist be it at one , two , three or six monthly intervals i can call to my pharmacy at any time and collect whatever i need I have absolutely no problems whatever.
I was a little upset tonight did any of you see the late news where the lady was requesting PD suffers to donate their brain to science to aid a cure for PD, I don't know why but I just felt in despair for a short time.
Tulip
To put it simply, there are hundreds of thousands of patients out there with expensive repeat prescriptions for all sorts of woes. If the government were to implement a petition enabling all of them to stockpile drugs for many months ahead it would cost the country billions - no chance!
But if individually we nag our GPs enough, human nature says they'll eventually sign the damned paperwork, just to get us out of their hair! Maybe that's not fair, but neither is being one of the chosen few with PD.........
But if individually we nag our GPs enough, human nature says they'll eventually sign the damned paperwork, just to get us out of their hair! Maybe that's not fair, but neither is being one of the chosen few with PD.........
I saw it Tulip, but reacted differently. I thought it was great that at last our existence is being raised at a high profile level, and that the number of brain donors on file has shot up tenfold over the last year.
Don't despair!
Don't despair!
Hi Rene,
I am sorry to have to tell you but we are not the chosen few, sadly 10,000 annually are diagnosed with PD. I find this figure staggering. There must be a reason for it. I firmly believe that geopathic stress plays a big role in our well being.
Tulip
I am sorry to have to tell you but we are not the chosen few, sadly 10,000 annually are diagnosed with PD. I find this figure staggering. There must be a reason for it. I firmly believe that geopathic stress plays a big role in our well being.
Tulip
The lady on the TV, by the way, was famous actress (and cake maker) Jane Asher, who would be an excellent figurehead for us, in much the same way that Joanna Lumley supported the Ghurkas' cause.
(Do you remember the 1960s, when Jane was Paul McCartney's girlfriend, and her brother Peter - now a record producer - was half of the "Peter & Gordon" duo??!)
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(Do you remember the 1960s, when Jane was Paul McCartney's girlfriend, and her brother Peter - now a record producer - was half of the "Peter & Gordon" duo??!)
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Yes, I think they said there were 200,000 sufferers in the UK, increasing by 10,000 p.a. Joe Public isn't aware of this though - I think the PDS does a pretty poor job in raising our profile. We need some WHAM, BAM shock/horror campaigns out there.
Sorry renee ,
I can't say i do , I was born in 1959. I know we had no TV until I was about 10 years old so we were not very well informed about actors etc.
Tulip
I can't say i do , I was born in 1959. I know we had no TV until I was about 10 years old so we were not very well informed about actors etc.
Tulip
Gosh I'm getting old! I was born in 1950, so I'll be 60 next July. I was diagnosed in 2000, when I was 50.
I grew up 12 miles north of the centre of London, though, so I was always up to date on showbiz and the like.
Ho hum.....
I grew up 12 miles north of the centre of London, though, so I was always up to date on showbiz and the like.
Ho hum.....
I was never much into actors I just love music though - I think thats where all my energy went - I am singing one of BEYONCE songs tomorrow night at a show - I HAVE SOME CHEEK 
See you on next year's X Factor then.........
think i deviated from the REPEAT PRESCRIPTION arguement, sorry
If Susan Boyle can do it , why not us?
Hi Renaissance/Peter,
I wonder whether the PDS and/or NHS have got their numbers wrong! We are told that our numbers increase by 10,000 per year, but the total number of PD sufferers maintains at 120,000 per year. That means we must be dying off at the same rate as being diagnosed!
Regards, Cecily.
I wonder whether the PDS and/or NHS have got their numbers wrong! We are told that our numbers increase by 10,000 per year, but the total number of PD sufferers maintains at 120,000 per year. That means we must be dying off at the same rate as being diagnosed!
Regards, Cecily.