URGENT request : Make a submission to the Scottish government re: harm done, dependance and withdrawal. You don't even have to be from Scotland.

[nz11]

I am breaking the rules of this site but wonder if we can keep this here until 14 feb when it closes.

 

I believe this is an unbelievably important submission. It is an urgent invitation to please make a submission if you feel you have been harmed in anyway by these drugs.

 

Lets all submission dump on these people so they get the message and a glimpse of the numbers harmed. 

 

Also my feeling is this is important, for if we can get just one government to say hey we got a huge problem here something isn't right -we got serious dependance and withdrawal issues and we gonna stop the harm, then that could well set a precedent for other petitions to other governments .

 

It doesn't have to be long you could even just copy and paste your intro first post and tweak it slightly for getting the message of harm across. 

 

Please tell them about your problems taking and withdrawing from antidepressants and/or benzos. Send by email to petitions@parliament.scot and quote PE01651 in the subject heading. Keep to a maximum of 3 sides of A4 and you can't name for legal reasons any doctor you have consulted. Tell them if you wish to remain anonymous. We need the numbers to help convince the committee members we are not isolated cases. You have until mid February. Thank you one and all.  

 

One again this is not a time to talk about history this is the time to make history.

Thankyou so much in advance.

NZ11

 

Lets not leave it till the last day.

 

 

On 28/01/2018 at 1:11 PM, Vanora said:

In case people have missed this I'd like to ask again if any of you might want to submit something for our petition on Prescribed Drug Dependence and Withdrawal currently awaiting its third consideration at the Scottish Parliament. You don't even have to be from Scotland. By clicking on the link below you can read some of the previous submissions but be warned many of them are quite harrowing.

 

http://www.parliament.scot/GettingInvolved/Petitions/PE01651   

 

 

Edited March 3, 2018 by ChessieCat
fixed up glitched text

[nz11]

submission done

nz11

[Vanora]

Big thank you to nz11 for spreading the word about our petition. I think the committee members and even the clerks who deal with our submissions are genuinely moved by what they have read, we are having an impact. As nz11 says this doesn't have to be more than a few paragraphs but don't spare them how terrible it is.

 

It will take them about a week to acknowledge your email as the amount of clerks they have to deal with this is quite small. Be aware that because of data protection you can't name people such as doctors unless of course you have their permission. In fact if you know of any doctors/psychiatrists willing to give us some backing that would be fantastic too. So far Professor John Read, Prof David Healy, and Dr Terry Lynch are among the more notable names to have contributed. You have until the 15th of February and I want to thank everyone who feels able to help advance our cause, they can't say they weren't informed of the harms of antidepressants and benzos.

   

[Martina23]

I will write there also when I get up from the bath :-)

[Martina23]

Thank you Vanora for great work!

[nz11]

That would be great Martina.

This is an opportunity to be heard we have the ear of a government.

So far in 12 hours according to this thread we have just one person who feels they have been harmed. 

Is everyone else happy with their doctor caused plight idk . I for one am not! 

 

Remember Law 101 'silence is not acceptance' so lets not be silent.

Also Law 101 something about a snail in a beer bottle i recall....oh yeah 'every customer is owed a duty of care' 

Lets bring it to their attention that the duty of care has been totally absent. 

 

[HAa]

How can I support - I sure would like to. 

 

[Martina23]

I submitted my contribution. I didnt precisely mention the doctor but I placed there the example of control study which was made by financially dependent doctor.  It was  not possible to explain it other. I asked them to keep it anonymous so hopefully they will not misuse it, and when yes, I think, it was necessary to tell the truth, how we can tell the truth when we can  not name anything, say anything etc. The criminals they have always more rights. So lets see. The history was done. My contribution is on their table.

[Vanora]

1 hour ago, HAa said:

How can I support - I sure would like to. 

 

 

All you need do HAa is to tell your story; how it came about you were prescribed the drug, the side effects you experienced and any other drugs prescribed, and also the difficulties you had trying to withdraw. Did you for example get any help or not from a doctor or psychiatrist, just the whole works really. Once written send via email to petitions@parliament.scot and quote PE01651 in the subject heading. You are restricted to 3 sides of A4 but don't hold back in detailing the hell of withdrawal. Tell them if you wish to remain anonymous and remember you cannot name for legal reasons any doctors you may have consulted unless you have their permission which would require a separate email from them.

 

You can read for yourself previous submissions at this link but you should be warned that many are a distressing read:  http://www.parliament.scot/GettingInvolved/Petitions/PE01651  

 

Thank you HAa, your support is much appreciated.

 

[Vanora]

1 hour ago, Martina23 said:

I submitted my contribution. I didnt precisely mention the doctor but I placed there the example of control study which was made by financially dependent doctor.  It was  not possible to explain it other. I asked them to keep it anonymous so hopefully they will not misuse it, and when yes, I think, it was necessary to tell the truth, how we can tell the truth when we can  not name anything, say anything etc. The criminals they have always more rights. So lets see. The history was done. My contribution is on their table.

 

Thank you so much Martina23 it sounds completely relevant, supporting evidence is very welcome. I think I can assure you that your anonymity is safe with the clerks of the petitions committee. Unfortunately we have to abide with the rule of the law, no way round it I'm afraid but by providing your submission you are doing your part in bringing us all that bit closer to calling time on the injustice of prescription drug dependence and withdrawal. Wouldn't it be good if we were part of a turning point in history. We can but hope.  

 

[Kristine]

I'm working on my submission.  Will let you know when ive emailed it. K 

[Vanora]

1 hour ago, Martina23 said:

I submitted my contribution. I didnt precisely mention the doctor but I placed there the example of control study which was made by financially dependent doctor.  It was  not possible to explain it other. I asked them to keep it anonymous so hopefully they will not misuse it, and when yes, I think, it was necessary to tell the truth, how we can tell the truth when we can  not name anything, say anything etc. The criminals they have always more rights. So lets see. The history was done. My contribution is on their table.

 

Sorry about this Martina23 but the penny has dropped, you're talking about the anonymity of the doctor behind the control study right? It isn't necessary to keep that anonymous it's more the prescribing doctor I'm talking about, it's the danger of being sued! A number of us have provided supporting evidence by using references to pieces of research, that's definitely ok. I hope I've cleared that up for you.

[Vanora]

25 minutes ago, Kristine said:

I'm working on my submission.  Will let you know when ive emailed it. K 

 

👍 Fantastic K.

[nz11]

4 hours ago, Martina23 said:

submitted my contribution.

You're the best Martina

[nz11]

2 hours ago, Kristine said:

I'm working on my submission.  Will let you know when ive emailed it.

 

Thankyou K

 

[nz11]

Sorry people we have been moved off the leader board.

This is now a repeat of vanoras thread so maybe it should be merged.

 

Every submission is gold. 

nz11

 

[HAa]

How to submit? Practical where do I do it. Is there a link?

[Vanora]

7 minutes ago, HAa said:

How to submit? Practical where do I do it. Is there a link?

 

It's quite easy HAa. Write out your submission as an email and send to petitions@parliament.scot and quote PE01651 in the subject heading. Good luck and if you have any problems let me know.

[nz11]

Send by email to :

petitions@parliament.scot and quote PE01651 in the subject heading.

 

Keep to a maximum of 3 sides of A4 and you can't name for legal reasons any doctor you have consulted. Tell them if you wish to remain anonymous

 

Put your story onto a word document and then email as an attachment to the above email address.

[nz11]

oh Vanora you just bet me to post oh well . They say things have to be repeated several times to get the message across.

 

 

[Vanora]

👍 You did a far better job of putting things across than me nz. 

[nz11]

You're doing a great job too Vanora.

[Vanora]

Hi data17,  First off I want to say thank you for signing our petition and yes, gobsmacked is a good description of how most of us felt. Antipsychotics are obviously the drugs you have the most issues with but I note you were also taking diazepam at one stage. Our campaign's focus is on antidepressants and benzodiazepines merely because they form the majority of our experiences but polypharmacy is often the norm. I was briefly prescribed Seroquel in antidepressant withdrawal and I'm so very glad that it was short term. Perhaps you might write highlighting more the benzo side of things if you felt it relevant. Our concern is that people have informed consent. Joanna Moncrieff makes the point that antipsychotics are sometimes useful in acute situations but not so much in the long-term. Knowledge makes all the difference and GPs I've found are pretty ignorant though my own introduction to antidepressants actually came about through psychiatry.  Good to hear you that you are getting appropriate help from your doctor data17, as I'm sure you are aware this isn't unfortunately, a universal experience among antipsychotic users but I wish you the best of luck with your withdrawal.

 

The points you make about the national helpline are very valid and I agree the more complex cases would require the input from medical sources knowledgeable about withdrawal. That I suppose is the crux of the matter, we need knowledgeable people and that has to mean including the prescribed drug community who are experts through experience and that's what we would be pressing for. The helpline and website would only be the first port of call, we would hope that people would then be directed to local support services. As you say the problem is the funding for such services. REST is one of the few withdrawal charities in the whole of the UK and it's set to lose its funding, I think this tells you the kind of reluctance on the part of government to help prescribed drug dependence. In Scotland the situation is even more dire, I can't think of anything resembling the likes of REST or Barry Haslam's Oldham Tranx which was originally for benzo users but now deals with as many seeking help with antidepressants. There is however a second reason behind our petition, we aim to get recognition for the long-term harms of these drugs and increase the awareness among politicians and the public for their lack of efficacy.

 

If you think you could submit something for our petition that would be very welcome data17, every single submission could help start the ball rolling towards getting a helpline but that would be just the beginning.            

[nz11]

Bump

just wanted this back in the no.1 spot.

[Vanora]

3 hours ago, data17 said:

 

Thank-you Vanora for your reply. I have been thinking this over, re-read the petition and associated documents, read the Scottish Govt's 10 year strategy for mental health.

 

Regarding my benzo use, it was largely intermittent and I was made aware of the dangers of dependence, so I would say there was informed consent. When I did end up dependent anyway (because of a gap in other services), it was noted after a couple of years and I was not forced to stop, but allowed to taper as I wanted. I would say there is pretty good awareness of the dangers of benzos, especially by the younger doctors. My withdrawal was certainly much worse than expected. Without BenzoBuddies I would have concluded that I was someone who needed these meds, but I didn't taper to a very low dose as recommended. 

However, from reading the transcript of the discussion on Jan 18th, benzo dependence was acknowledged straight off, and I don't think this is such a big problem.

 

I think the real issue here is antidepressants.

The pdoc adviser dismissed there is any problem beyond mild "discontinuation" - denying that tolerance exists, when I've read here of people having to increase doses or swap meds due to "poop out"; then reluctantly conceded he believes peoples "descriptions" of their experiences are sincere ( he's come across nutters like this in his psych clinic); then says that it would be impossible to study the extent of the problem because there's a spectrum of experiences.

 

I don't have anything to add to what people have already said, but I am watching this closely.  

 

No doubt given our staggering numbers of antidepressant prescriptions this issue is rapidly overtaking the benzo problem but I think the benzodiazepine scandal has never really gone away as much as I would like to think it had data17. I actually think the victims deserve a public inquiry and people like Barry Haslam have been campaigning for this for nearly 30 years, every successive government have done nothing other than make sympathetic noises. I've got some data from the BMA on UK prescribing patterns for benzos so that you get a better picture of what is actually going on.

 

- there were 12 million benzodiazepine prescriptions in 2015, costing over £50 million

- there has been an increase in very long-term (over 100 days) benzodiazepine prescribing, but no change (or a slight decline) in the proportion of benzodiazepine prescribing periods that were just over 30 days

- the number of 16-80 year old patients taking benzos and Z-drugs over the long-term (more than one year) is 0.69% - when applied to nationwide patient numbers this projects that there are between 265,000 and 295,000 patients taking benzodiazepines or Z-drugs over the long-term in the UK

- 35% of all patients taking benzodiazepines or Z-drugs are taking these drugs long-term - at least 12 times longer than the BNF (British National Formulary) recommendation of 2-4 weeks

 

Of course this represents a significant drop from the 300 million benzo prescriptions issued between 1960 and 1977 (at the time the CRM claimed that only 28 people were dependent on these drugs!) but neither is it negligible. 

 

I wrote to the Scottish government about my concerns about the long-term prescribing of benzos, this is what they had to say: "Medical student teaching now emphasises that benzodiazepines have an important place in treatment but should not be overused or continued indefinitely. They can, however, be highly effective in treating a variety of conditions including anxiety disorders. Sometimes an active decision is made to maintain a patient on them." There is nothing about this statement that leads me to believe they have any understanding of benzo tolerance.

 

The Dept of Health back in 2011 commissioned 2 reports into prescribed tranquillisers one from the National Addiction Centre and the other from the National Treatment Agency and a certain Prof John Strang co-authored the NAC report but he failed to report pharma interests such as Genus/Brittania which manufactures Ativan and Clonmel Healthcare which manufactures Zopiclone and Zoplpidem. (He wasn't the only one involved who had pharma links). One of the co-investigators in a current project looking into the long-term prescribing of dependence forming medicines is, would you believe, Prof John Strang!

 

Wyeth the original manufacturer of Ativan provided no warnings over the risk of dependence until 1988 even though it knew about the problem in 1972. Bear in mind that my mother was prescribed this drug in the 1990s and was probably taken off cold turkey without my knowledge in a nursing home. Doctors it would seem are still not keeping to the 2-4 week CSM guidelines issued in 1988. As for benzo tapering advice I had to give my present GP - a man probably in his early 40s - the Heather Ashton Protocol, he had never heard of her and I suspect he isn't just an isolated case. I wonder how patients have been switched over from benzos to an antidepressant or had an antidepressant added. 

 

If you want hear an incredible example of downright ignorance and denial take a listen to this 2011 BBC Radio 4 programme where Dr Clare Gerada a former Chair of the Royal College of General Practitioners downplays benzo withdrawal. Her psychiatrist husband Prof Sir Simon Wessely, former president of the Royal College of Psychiatrists likes to talk about the "under treatment" of depression. You can probably tell where he is on the SSRIs. 

 

http://www.bbc.co.uk/programmes/b012wxxw  

 

As for Dr John Mitchell's take on antidepressant prescribing, he is a prime example of the medical profession, and psychiatry in particular, downplaying a massive problem. Sound familiar? 

 

 

 

 

 

 

  

  

[mammaP]

Thanks for posting NZ, I've pinned it to the top until Feb 14. My psychiatric nightmare started in Scotland so I will be joining in. 

[Vanora]

3 hours ago, mammaP said:

Thanks for posting NZ, I've pinned it to the top until Feb 14. My psychiatric nightmare started in Scotland so I will be joining in. 

 

Thank you for allowing nz11's post to remain pinned to the top until the final day for submissions which is actually the 15th February. My psychiatric hell began and ended in Scotland so you have my sympathies. Lets hope we get to see the beginning of change in Scotland mammaP, something positive from out of the nightmare 

[mammaP]

After many drugs and experiments it was decided that I was 'treatment resistant'.  I was sectioned a few times and had lots of ECT because I was getting worse despite treatment.  That started in '94.  About 2 or 3 years ago I found a paper written by my psychiatrist in Scotland calling for voluntary euthanasia or assisted suicide for patients suffering from treatment resistant depression. There is a link on this site somewhere. Back then I would have been up for it! It makes me shudder o think of it. 

[powerback]

22 minutes ago, mammaP said:

After many drugs and experiments it was decided that I was 'treatment resistant'.  I was sectioned a few times and had lots of ECT because I was getting worse despite treatment.  That started in '94.  About 2 or 3 years ago I found a paper written by my psychiatrist in Scotland calling for voluntary euthanasia or assisted suicide for patients suffering from treatment resistant depression. There is a link on this site somewhere. Back then I would have been up for it! It makes me shudder o think of it. 

Yikes MP ,psychiatry is up there with a despicable history like the catholic church ,lets just hope we are on the downward curve of the psychiatry  power  also .

[Martina23]

5 hours ago, Vanora said:

 

No doubt given our staggering numbers of antidepressant prescriptions this issue is rapidly overtaking the benzo problem but I think the benzodiazepine scandal has never really gone away as much as I would like to think it had data17. I actually think the victims deserve a public inquiry and people like Barry Haslam have been campaigning for this for nearly 30 years, every successive government have done nothing other than make sympathetic noises. I've got some data from the BMA on UK prescribing patterns for benzos so that you get a better picture of what is actually going on.

 

- there were 12 million benzodiazepine prescriptions in 2015, costing over £50 million

- there has been an increase in very long-term (over 100 days) benzodiazepine prescribing, but no change (or a slight decline) in the proportion of benzodiazepine prescribing periods that were just over 30 days

- the number of 16-80 year old patients taking benzos and Z-drugs over the long-term (more than one year) is 0.69% - when applied to nationwide patient numbers this projects that there are between 265,000 and 295,000 patients taking benzodiazepines or Z-drugs over the long-term in the UK

- 35% of all patients taking benzodiazepines or Z-drugs are taking these drugs long-term - at least 12 times longer than the BNF (British National Formulary) recommendation of 2-4 weeks

 

Of course this represents a significant drop from the 300 million benzo prescriptions issued between 1960 and 1977 (at the time the CRM claimed that only 28 people were dependent on these drugs!) but neither is it negligible. 

 

I wrote to the Scottish government about my concerns about the long-term prescribing of benzos, this is what they had to say: "Medical student teaching now emphasises that benzodiazepines have an important place in treatment but should not be overused or continued indefinitely. They can, however, be highly effective in treating a variety of conditions including anxiety disorders. Sometimes an active decision is made to maintain a patient on them." There is nothing about this statement that leads me to believe they have any understanding of benzo tolerance.

 

The Dept of Health back in 2011 commissioned 2 reports into prescribed tranquillisers one from the National Addiction Centre and the other from the National Treatment Agency and a certain Prof John Strang co-authored the NAC report but he failed to report pharma interests such as Genus/Brittania which manufactures Ativan and Clonmel Healthcare which manufactures Zopiclone and Zoplpidem. (He wasn't the only one involved who had pharma links). One of the co-investigators in a current project looking into the long-term prescribing of dependence forming medicines is, would you believe, Prof John Strang!

 

Wyeth the original manufacturer of Ativan provided no warnings over the risk of dependence until 1988 even though it knew about the problem in 1972. Bear in mind that my mother was prescribed this drug in the 1990s and was probably taken off cold turkey without my knowledge in a nursing home. Doctors it would seem are still not keeping to the 2-4 week CSM guidelines issued in 1988. As for benzo tapering advice I had to give my present GP - a man probably in his early 40s - the Heather Ashton Protocol, he had never heard of her and I suspect he isn't just an isolated case. I wonder how patients have been switched over from benzos to an antidepressant or had an antidepressant added. 

 

If you want hear an incredible example of downright ignorance and denial take a listen to this 2011 BBC Radio 4 programme where Dr Clare Gerada a former Chair of the Royal College of General Practitioners downplays benzo withdrawal. Her psychiatrist husband Prof Sir Simon Wessely, former president of the Royal College of Psychiatrists likes to talk about the "under treatment" of depression. You can probably tell where he is on the SSRIs. 

 

http://www.bbc.co.uk/programmes/b012wxxw  

 

As for Dr John Mitchell's take on antidepressant prescribing, he is a prime example of the medical profession, and psychiatry in particular, downplaying a massive problem. Sound familiar? 

 

 

 

 

 

 

  

  

Vanora, this makes me so depressed this ignorance. That they say that "hm, sometimes benzos are effective long term", no problem that the people will get addicted, they dont even understand the level of suffering they are bringing to the people and the worst is by such ignorance from the side of government it is even hard to sue.

 

By such ignorance it makes me feel to give it up and not to try to show them which deceit these drugs are. They will understand it when they get poisoned themselves.

 

[Vanora]

1 hour ago, mammaP said:

After many drugs and experiments it was decided that I was 'treatment resistant'.  I was sectioned a few times and had lots of ECT because I was getting worse despite treatment.  That started in '94.  About 2 or 3 years ago I found a paper written by my psychiatrist in Scotland calling for voluntary euthanasia or assisted suicide for patients suffering from treatment resistant depression. There is a link on this site somewhere. Back then I would have been up for it! It makes me shudder o think of it. 

 

Dear Lord mammaP, that's horrendous and very sinister coming from a shrink, how many might actually be in withdrawal like you. Wow! I came close to being sectioned myself and ECT was mentioned but I managed to dodge the bullet. They were talking about sending me to Dundee at one stage, there they have advanced interventions for severe mental health disorders and mostly that means neurosurgery like vagus nerve stimulation. It's weird isn't it, at a time of universal toxic chemical psychiatry we also have procedures that wouldn't be out of place in the dark ages.      

[Vanora]

1 hour ago, Martina23 said:

Vanora, this makes me so depressed this ignorance. That they say that "hm, sometimes benzos are effective long term", no problem that the people will get addicted, they dont even understand the level of suffering they are bringing to the people and the worst is by such ignorance from the side of government it is even hard to sue.

 

By such ignorance it makes me feel to give it up and not to try to show them which deceit these drugs are. They will understand it when they get poisoned themselves.

 

 

Yeah, it makes me depressed as well Martina23. Benzos have been around since the early 60s and still there is ignorance at the very highest levels of government, it beggars belief. But you know government advisers from within psychiatry - and how many of them are linked to pharma - influence policy on what gets prescribed and they have little concern for acknowledging patient experience, people like us don't appear on their radar. I'd have quite a few doctors, psychiatrists and a fair few politicians take a benzo combined with an antidepressant and maybe even an antipsychotic like Seroquel for about a year and then have them follow official tapering guidelines and see how they get on. That would be interesting. 

 

We can't give up Martina23, there are lots more potential victims waiting down the line, little kids on psych drugs. I can't bear to think about it.  

[nz11]

Hooray we are permanently bumped to the top ....

[nz11]

Hooray also cos got a local survivor a non sa member to submit a story.....we are getting the job done Vanora little by little. 

[Vanora]

Thanks nz brilliant work, glad to see you're spreading the word beyond the forum. The work is being done little by little with every submission.

 

If you have sent your story to the petition clerks but as yet you haven't had an acknowledgement after about a week or you don't see your story published on the petition's website please email the clerks and ask them about it. We want the evidence to mount up!

 

http://www.parliament.scot/GettingInvolved/Petitions/PE01651     

[nz11]

91 submissions

Its going to be over 100