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ANother vital No 10 petition but not telno related (Read 6,411 times)
Barbara
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ANother vital No 10 petition but not telno related
Aug 3rd, 2009 at 11:43am
 
Hi, I do hope everyone will allow me to post this request relating to another No 10 petition.  This one is NOT related to telephone numbers but is of vital importance to the health of literally millions of people.  I have been made aware that the govt is planning to require pharmacists, from January 2010, to sustitute generic drugs for branded without telling either the patient or prescribing doctor   While this may be ok in some if not most caes, there are certain conditions where such actions can be life-destroying, if not fatal, one of these being epilepsy where even the minutest change (eg the colouring used in the coating of a tablet) can be enough to trigger breakthrough seizures in a significant percentage of sufferers.  I know this because my youngest son has suffered from epilepsy since the age of 5 (he is now nearly 23) and this has been something of a battle over the years and has been won in that anti-epileptic drugs have been excluded from previous generic substitution requirements and even NICE guidelines exempt them.  However, it seems this may no be the case after January 2010 UNLESSS a further exemption is put in place.   Seizures can be fatal (my son nearly died from a severe one two years ago) and, at the very least, a single seizure will cost sufferers their driving licences (unles notcurnal) and thus possibly job, home, family.

For this reason, I am begging all forum members and visitors to the site to sign the Downing Street petition, the link is available from the Epilepsy Action website but this is the link I have taken (although I know sometimes this does not work):
http://petitions.number10.gov.uk/epilepsygenerics ;  I will be so grateful if you can support this, there are already nearly 7,000 signatures.  I hope you accept my reasons for posting this here.

Thank you all
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redant
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Re: ANother vital No 10 petition but not telno rel
Reply #1 - Aug 3rd, 2009 at 2:42pm
 
The link works OK-signed.
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SilentCallsVictim
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Re: ANother vital No 10 petition but not telno rel
Reply #2 - Aug 4th, 2009 at 12:17am
 
Is it possible to post a link to the new regulations themselves. If they amount to the denial of a physician's right to have a prescription dispensed as it is specified, then this is surely a serious matter that the BMA and others will be heavily involved in.

The case for preventing the substitution of alternatives that the prescribing physician knows to be unsuitable, be it for treatement of epilepsy or any other condition, seems crystal clear. (There could be an argument for a similar rule to cover the saynoto0870 database!)

The links on the Epilepsy Action website do not however point to such a proposal nor to a clear discrepancy with NICE guidelines. Some clue about the extent to which the pharmacutical industry is involved in this campaign would be helpful, to ensure that a signature would not be used to support its obvious opposition to generic prescribing.
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Barbara
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Re: ANother vital No 10 petition but not telno rel
Reply #3 - Aug 4th, 2009 at 9:52am
 
I can't provide a link to the specific regulations, there was however apparently an article in The Telegraph or Sunday Telegraph in the last few days (sorry I can't be more specific but this is how I originally became aware of the issue as my elderly father told me about it out of concern for hsi grandson, I am trying to track it down but could not find it on the website yesterday).  This has been an issue for some years, I had a dispute with our surgery about 12 years ago as they gave my son a mix of generic & branded medication at one dispensing, I had to be very firm and draw reference to statistics provided by Epilepsy Action, then the British Epilepsy Association.  The petition, if you look at it on the No 10 website, was started by someone on behalf of the Joint Epilepsy Council.  The dispenser at our surgery was unaware of the new proposals and quite shocked by the idea.

It should also be remembered, as we discovered four years ago, that a GP can overrule a consultant in terms of medication (ie your consultant -expert - can say that one needs X dosage of a particular medication but a GP - generalist with perhaps very limited knowledge of your condition - can disregard this and neither you as the patient nor your consultant can override the GP) and this too is most unsatisfactory.

I would certainly not think the pharmaceutical industry is involved in this particular petition, the argument is not that branded should always be used rather than generic but that the patient should be guaranteed continuity of what they have ie if they already use generic, always use generic as a switch to branded can be equally damaging, it is thechange which is significant.   There are already a number of issues regarding foreign manufacture and parallel importation of medication which in itself has led to medical problems.   As I said, this is not just about epilepsy although that it how I became aware of it.  Of course the proposals would save very little when one considers the additional costs of treating those made ill by a switch of medication and perhaps becoming unemployed/homeless.

Am having problems with the window, text is disappearing out of the box so will end here.   Does anyone know why this happens after about 1000+ characters???
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SilentCallsVictim
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Re: ANother vital No 10 petition but not telno rel
Reply #4 - Aug 4th, 2009 at 12:41pm
 
Barbara wrote on Aug 4th, 2009 at 9:52am:
...
Am having problems with the window, text is disappearing out of the box so will end here.   Does anyone know why this happens after about 1000+ characters???

I too have started having this problem, since moving onto IE8. I imagined that it was the sort of thing one has to expect with any downgrade to a later version of software these days.

There are two sides to the generic/branded issue. Clearly where money can be saved with no loss of benefit or dis-benefit then it is to be supported, as the pharmacutical industry does need money for research, but not for excessive profit. Penny pinching at the cost of effective treatment, or especially at the cost of causing bad side-effects, cannot ever be supported.

The issue of how physicians, be they GPs or specialists, prescribe, and how they are directed or incentivised to do so, is also an important issue.

Before I sign a petition criticising, and urging reconsideration of, an apparently stupid decision, I would want something a little stronger than a possible reference in a newspaper article to suggest that such a decision has been made. (There are quite enough actual bad decisions to attack without possibly wasting energy on mythical ones.)  I have enquired of the Department of Health and will post any useful information that comes back.

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SilentCallsVictim
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Re: ANother vital No 10 petition but not telno rel
Reply #5 - Aug 7th, 2009 at 10:23pm
 
SilentCallsVictim wrote on Aug 4th, 2009 at 12:41pm:
I have enquired of the Department of Health and will post any useful information that comes back.

I now have some information, helpfully picked out for me by a helpful agent on the DH helpline.

I quote below from what I am assured is the only relevant document covering these proposals that is published at this time. More detailed proposals may well be published in due course. The following quote is from 7.6 (ii) on page 20 of The Pharmaceutical Price Regulation Scheme 2009. (This covers a period of five years.)

Quote:
Subject to discussion with affected parties, the Department will introduce generic substitution in primary care. This will enable pharmacists and other dispensers to fulfil a prescription for a branded medicine by dispensing an equivalent generic medicine. Provision will be made to allow the prescriber to opt out of substitution where, in their clinical judgement, it is appropriate for the patient to receive a specific branded medicine. In these circumstances, the named brand must be dispensed. Provision may also be made to exclude certain categories of medicines for clinical reasons in the interests of patient safety.

The earliest date for the implementation of generic substitution it set to be January 2010.


The petition is simply a means of canvassing support for the exclusion of particular categories. Provision is already made for this, and it would seem unlikely that the view of NICE would not be considered in determining which categories are to be treated in this way. It is far too soon to allege that the particular drugs in question are not to be subject to this exemption. There is however no reason why well-organised interest groups could not canvass support for their particular case.

One hopes that the exemptions will be properly drawn so that the benefits of generic substitution may be gained where this is appropriate. The leading members of the pharmaceutical industry will doubtless be campaigning for as many exemptions as possible.


Most important perhaps is the provision for the prescriber to opt out of substitution. This is where the responsibility should lie. If the prescriber is perhaps unaware that a suitable generic substitute is available then it is fair for them to prescribe by name, but leave it open to the dispensing pharmacist to make a substitution if one is available. If they are unwilling for a substitution to be made then they must carry the responsibility to indicate this.

For the scheme to work, it is vital for prescribers to be aware of when substitution is not appropriate, so that whole categories of drugs do not have to be covered by exemptions simply to prevent inappropriate substitution in a few necessary cases.


I hope that the needs of sufferers from epilepsy and their carers will be properly met, and do not believe that they have yet been overlooked. The petition will help to ensure that this does not happen. I also hope that the same care will be taken in respect of sufferers from all other conditions, especially those without powerful lobby groups to argue their case.

As always, all manner of problems will emerge with the implementation, but I will leave speculation about this to those who are better aware of the relevant procedures.


Barbara is to be thanked for generously stating that epilepsy is but one of perhaps many conditions where there is a case for exemption.

It could be seen as odd that neither the petition, nor the information on the JEC website, makes any reference to the highly relevant provisions in the proposal. This would have perhaps enabled an explanation as to how they may be unsatisfactory in nature and why the drugs in question are unlikely to be covered by an exemption to be provided. If the petition had said “there are to be exemptions, please ensure that the following groups of drugs are on that list and that this provision is not dropped” it would have attracted far fewer signatures and generated far less possibly unnecessary concern.

(If there is any serious reason to believe that these fairly obvious and sensible provisions are likely not to be part of the scheme when it is implemented, then I would be happy to withdraw these remarks. At the time of writing I am not aware of any.)


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