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JamesMoore

Petition calling for tapering kits in the UK

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JamesMoore

Hi all, I'm new to the forums here but, like many of you, I am struggling to withdraw from my medication (in my case Mirtazapine). I feel so strongly about this that I believe that the Pharmaceutical companies should assist users who want to stop or reduce their medications.

 

I have created a petition at Change.org and I would be really grateful if you would visit the petition, sign it and make your friends, families and/or co-workers aware of it too. The more we get this issue recognised and discussed, the greater the chance that we can get the help we need.

 

The petition has so far had the support of a few charities including Mind and also by Dr. Ben Goldacre.

 

Thanks and my best wishes to anyone struggling with anti-depressant withdrawal.

 

James

 

https://www.change.org/p/secretary-of-state-for-health-jeremy-hunt-make-pharmaceutical-firms-help-users-who-want-to-stop-taking-anxiety-depression-drugs

 

 

 

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Junglechicken

James,

 

I have signed this petition.

 

This is such a good idea, thank you.

 

JC

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Terry4949

James I have also signed this position , even if they don't do anything at least it opens the door to a few more people who aren't away of any problems , good idea

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Terry4949

plus I would like to add , Dr . Ben goldacre is one of the good guys , and acknowledges the problems with these medications

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scallywag

This is brilliant James. Thanks for starting the petition and for posting it here.

 

If you haven't already, you might want to post it in the UK threads in the Relationships forum.

 

Colchester & Essex

Southwest UK

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Terry4949

I wish these were available when I was withdrawing from Effexor , the only thing is I wonder if the kits will do 10% drops as advices here or will they just drop in larger amounts , anyway it's a start and at least they acknowledge the fact that they need to withdraw slower and by smaller amounts

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JamesMoore

Hi All, thank you so much for your suggestions and help so far, I am really grateful.

 

@scallywag - thanks for the links to the local groups that's really useful

@altostrata - really interesting to hear that something similar happens in the Netherlands already, I am hopeful that we can make some progress elsewhere by raising awareness of the issue but this certainly shows that the approach works.

@junglechicken, @terry4949 thanks for the signatures.

 

Please raise awareness of the petition if you can or feel free to suggest other groups/users that I could promote the petition with.

 

Best wishes

 

James

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Altostrata

It's an excellent idea, JamesMoore. I hope you go far with it. There's an MP who's very interested in psychiatric drug issues, I don't remember his name, but you might contact him. I believe his daughter died in some drug-related incident.

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JamesMoore

Hey all, thank you so much for the positive feedback and for the support, I am very grateful.

 

I have put together a web site to accompany the petition, if any of you were interested in having a look it is here...

 

http://www.jfmoore.co.uk

 

Thanks again.

 

James

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CJAJ16

Hello Everyone,

 

I'm not sure if this has been posted before but whilst doing further research this evening I came across this petition.

 

James Moore has a wonderful vision and is trying to achieve the following...

 

We want the Pharmaceutical manufacturers to produce “drug tapering kits” which provide the most commonly prescribed medications in decreasing doses over a period of time.

We need tapering kits to help the millions of users of psychoactive pharmaceutical drugs because:

Many tablets are only available in increments that are so large that they are useless for gradual lowering (tapering) of the dose.

Liquid forms for some medications are available but tend to be hugely expensive and therefore the NHS will not provide them.

Pill cutting is, at best, a hit and miss affair.

Many doctors and psychiatrists confuse the symptoms of withdrawal with a return of the symptoms that the tablet was originally prescribed for.

These kits would save a significant amount of time for General Practitioners, Psychiatrists and Community Mental Health teams.

These kits would help users of psychiatric medications stop taking them safely and in a controlled fashion, giving them control over their drug intake.

The pharmaceutical companies are already set up to manufacture massive quantities of these drugs, therefore it cannot be a huge additional cost to manufacture tablets of decreasing dosages. At most this is likely to be a tiny fraction of a percentage of profit but would win a huge amount of public confidence that the Pharmaceutical firms have their customers safety at heart.

 

He has initiated a petition for the Secretary of State for Health, Jeremy Hunt, which I feel we all should sign. It's too late for many of us but I know you'll all agree with me that such support and guidance would have made tapering and withdrawal a easier journey. If it helps one person to not experience the hell I've been through it's worth it!

 

Please sign and read more here...

 

https://www.change.org/p/secretary-of-state-for-health-jeremy-hunt-make-pharmaceutical-firms-help-users-who-want-to-stop-taking-anxiety-depression-drugs?lang=en-GB

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CJAJ16

Hi James

Admin moved my above post into this thread. I came across your website last and excitedly posted the above in a new thread, not realising you were here and had started one already.

 

I just want to thank you for all you're doing, I think you're ideas are wonderful and I pray you get all the signatures you need to take this all the way. It is too late for me but this could be life changing for so many!

I've sent the link to everyone I can. Thank you again! ????

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Vigor

Hey James,

 

I am sorry for the situation you are in, just understand you are in good company here. I signed your petition. I hope this goes through - not only could it help you - but countless others. This is something that should have been in development decades ago. 

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JamesMoore

Hi all, I just wanted to say thank you for your support and feedback so far and also for signing the petition. Also I wanted to update you progress so far. The petition is doing well and I've had support from Dr. Chris van Tulleken (the doctor who gave up drugs) as well as Dr. Ben Goldacre and Beverley Callard. Interestingly a number of psychiatrists and doctors have also signed and I have had really good feedback from a number of mental health professionals.

 

My next step is to start to raise awareness of this issue with Government and I already have a few contacts that I am making use of.

 

There are a couple of excellent facebook groups that I wanted to recommend that you look at, there are lots of like minded people on these groups who are keen to share their stories. Both these groups are closed so you would have to ask the admin to join but it's well worth it. I am sure that some of you are already members but if not, please consider joining.

 

https://www.facebook.com/groups/1797744060445923/?ref=bookmarks

 

https://www.facebook.com/groups/204732929546136/?ref=bookmarks

 

Lastly, I have been updating my own website to include more information, if you get the chance, I'd love to get some feedback as the most important comments come from those who,have experienced these issues first hand.

 

Www.jfmoore.co.uk

 

So, sorry for the rambling, but thanks to all of you for taking the time to contribute to the petition.

 

All the best

 

James

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JamesMoore

@CJAJ16 I don't feel worthy of such high praise but thank you so much, your feedback adds to my resolve to get something done for all those suffering in silence.

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nz11

 This is something that should have been in development decades ago. 

Exactly.

Thanks again James you are an inspiration and definitely praise worthy.

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CJAJ16

@JamesMoore

Thank you for the wonderful update! You're doing a fabulous job and getting the support from such recognised and respected professionals!

At the start of my journey into the hell that is withdrawal I asked "isn't there anything we can do!? Shouldn't more be done to make ppl aware and help sufferers?" And you're pushing forward and answering those questions which is why I feel so inspired and excited by all you're doing!! I check the petition page daily and feel so happy to see that number rising everyday!

I will eagerly follow you every step of this journey and will gladly do anything I can to help.

Thank you again! ????

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JamesMoore

Hello all, thank you again so much for the feedback and for promoting the petition, its making a real difference and we are nearly at 950 signatures as I write.

 

I wanted to let you know that I now have some overall aims for the campaign to try and better explain to others what we are trying to do, briefly there are:

1. Raise awareness of the difficulties users face when they want to stop taking psychoactive drugs.

2. Encourage and support conversations between users, mental health professionals and policy-makers around this issue.
3. Promote the idea of drug tapering kits and to encourage Pharmaceutical manufacturers to better support the users of their products.

 

Please continue to share the petition or my website among your family, friends and co-workers, even if others are not directly affected they probably know someone who is. If you have any ideas for further promotion then please do let me know.

 

Also, there is another initiative which is well worth supporting, the Council for Evidence based Psychiatry (CEP) are asking people to write to their local MPs to raise the issue of dependence on prescription drugs. If this is something that you would like to do the following link will give you all the details...

 

http://cepuk.org/2016/09/21/support-campaign-recruit-mps-demand-national-helpline-prescribed-drug-dependence/

 

Thanks for your time.

 

James

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JamesMoore

Hi all, I have some exciting (and slightly terrifying!) news. The Victoria Derbyshire programme are shortly going to run an item looking at the experiences that people have taking antidepressants, including the difficulties some users have when attempting to stop. As part of this, all being well, I will have a short live interview about my petition.

 

This is such a great opportunity to gain some much needed awareness of the struggles that so many have using these drugs. If you can find the time please watch and, even better, contact the show to share your experiences. We need to demonstrate how many are suffering in silence, unable to get the help they need, this will make a huge difference and a real impact. Let’s light up their Twitter feed like a Christmas tree!

 

The broadcast details are:

- The Victoria Derbyshire show

- BBC 2 and BBC news channel

- Wednesday 19 October

- 0900 to 1100

 

Contact details:

- Twitter @VictoriaLIVE

- Facebook: http://www.facebook.com/VictoriaDerbyshire

- Email: victoria@bbc.co.uk

- SMS: 61124

- WhatsApp: 07753 428 430

 

Thanks so much for all the support.

 

James

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Terry4949

Well done James , I am going to try and contact the show to share my hell with a/d withdrawel , as untill the people responsible are educated in this matter the more people are going to suffer , I have just spent 4 weeks in a mental health hospital and I saw 3 doctors while I was in there and they all said that it was nonsense and that I was depressed and need medication and long term withdrawel is not possible , and that it is the depression returning , something has to change , I like you am struggling to withdraw from mirtazapine and for me I have been worse while on it , let's hope somebody actually takes notice

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JamesMoore

Hi Terry, thanks so much for your reply and I'm so sorry that things recently have been so difficult for you. If you did feel up to sharing your experiences it would really help others. It is brave to be so open about it. Tomorrow is a real chance to make a difference and get the matter some much needed airtime. I'd be lying if I said I wasn't bricking it about being on live TV though! I honestly can't help feeling that chemistry and statistics have taken much of the compassion out of mental health. Hopefully we can start to change things for the future, first steps and all that. My very best wishes to you and I'm sure that things will start to improve. Cheers.

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anongrl5590

I have signed the petition. I pray that this gets out and that big pharma will take action to create these kits. It's so sad to not have any real professional info on what to do when tapering off and having to rely on ourselves.

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JamesMoore

HI everyone, I wanted to let you know that BBC Radio 5 live are broadcasting a programme on antidepressants on Sunday 12 February from 1100 to 1200. I am interviewed as part of the program. If you could listen in that would be great, if you felt like making contact with the show to share your experiences that would be even better.

Here's a link to the programmes web page:
http://www.bbc.co.uk/programmes/b08dnpkn

Contact details are:
Phone 0500 909 693
SMS 85058
Email: 5liveinvestigates@bbc.co.uk
Facebook: www.facebook.com/5live
Twiter: @BBC5live

Thank you and my best wishes to anyone struggling with antidepressants.

James

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scallywag

This is a cross-post about taper kits in the Netherlands. In Feb. 2017, Airwave, a new member from The Netherlands, posted a photo of the taper options available for venlafaxine (Effexor):

... I've recently moved houses so most information is scattered around the place, but i'll try my best to find some of the documents.

At the very least, here is a screenshot of the options i had available for tapering(The one checked here is the one i actually used):

w6lha02d6rlu4ui6g.jpg

some quick translation:
dag = day,
dagen = days,
duur afbouw traject = duration of total tapering program in days.

Link to Airwave's Intro topic

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JamesMoore

Hi all

 

Thanks so much for the responses here. I just wanted to add what I know, I have been contacted by Dr. Peter Groot who works at the Maastricht University Medical Centre, Department of Psychiatry and Psychology. Dr. Groot and his colleagues have put a lot of effort into a product called Tapering strips which are, essentially, a graduated reduction method of stopping antidepressants. They are in trial stage and, at this point, I believe only available in the Netherlands, however, this is a significant development and shows that a graduated dosage reduction method is possible and can be produced. This solution probably won't work for everything, for one thing the reactions are generally over 28 days which may well be too fast for some. However, progress is being made.

 

​Most of the information on tapering strips is in Dutch at present although Dr. Groot tell me that they are working on English translations. This paper is in English and explains the concept.

 

http://www.cinderella-tx.org/files/2014/07/Groot_TvP_10_2013_Engels.pdf

 

Thanks

 

James

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JamesMoore

Can anyone advise how I edit a post, made a couple of typos above but don't know how to change them?

 

Thanks

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scallywag

James - members can only edit within 60 minutes of first submitting a post.

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JamesMoore

Ok thanks Scallywag, in which case, what I needed to say in the above post was....

 

This solution probably won't work for everyone, for one thing the reductions are generally over 28 days which may well be too fast for some. However, progress is being made.

 

​Most of the information on tapering strips is in Dutch at present although Dr. Groot tells me that they are working on English translations. This paper is in English and explains the concept.

 

http://www.cinderell...2013_Engels.pdf

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JamesMoore

For anyone interested, I was recently interviewed for The Anxiety Podcast by Tim JP Collins, I talked to Tim about Anxiety and the impact it had on my life, the overuse of medications for depression and anxiety, my problems with withdrawal and also my petition and the new podcast too.

 

If you felt like listening in, the interview is here...

 

http://www.timjpcollins.com/podcast/jamesmoore

 

Thanks so much.

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nz11

James i just received the latest change.org email update.

I have to say i am blown away with what you are accomplishing what a tremendous voice you are and what brilliant ideas you have.

Ive already said it but i thankyou again so much for what you have done in this very short time already its putting a massive smile on my face.

I really liked this:

 

ivtycEraAORdqZq-800x450-noPad.jpg?149164

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JamesMoore

Hi there NZ11, thank you so much for your feedback, I'm so pleased that people are getting into the podcast, it really is a subject that needs much more attention. I have already interviewed some great guests, both experts and users too and I'm looking forward to sharing their stories and experience with you. Hearing from you and others really makes doing the podcast worthwhile, thank you so much.

 

For anyone that wants a taster of the podcast, there are some clips here:

 

https://soundcloud.com/user-581729117/sets/clips-from-lets-talk

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keepinghope

Hi James, I signed your petition, and have listened to some of the podcasts you've put together. I really admire the campaign and your drive with it. 

But I can't ever see the drug companies doing this. Maybe the NHS, but with the current state of that, it's probably not likely, more likely is them starting a helpline for people addicted to prescription drugs. Hopefully manned by more helpful staff than the bloke who answered the phone at Samaritans and told me I should go for a jog. 

 

I'm fast losing the hope that it's even possible to come off these drugs and recover anywhere near your 'normal' level of being, pre-drug. I was hopeful when I started out (hence the username) but after seeing people suffering even after long tapers, people years and years out from their last dose and still struggling, what good, ultimately, will taper kits do? It needs to be known how harmful they are, that the drug companies are literally poisoning us with chemical lobotomies. That you're more likely to kill someone (yourself or others) when either starting or going off these drugs. That they damage lives in an indescribable way. 

I want to burn whatever monstrous lab these drugs come from to the ground. I'm so angry at what an SSRI has done to me, at the people I've hurt and am still hurting and the time I've wasted not caring about anything at all. Maybe we all get to this point somewhere in our withdrawal. I feel deceived and like I should have 'mug' stamped on my forehead, that I didn't in my wildest dreams think that people who take an oath to help other people could dole out such harm instead. 

 

I'm so sorry to be so negative on a really great thing that you are doing, but when doctors won't even admit that withdrawal exists past a couple of weeks, and even the dutch trial tapering advice is only a max of 5 months (admittedly a lot better than the 5 weeks my GP gave me to come off a drug I'd been on for 13 years) people will still be crashing a few weeks or months after the last dose, and doctors will still be saying it's their symptoms coming back, because they know nothing about withdrawal, because the drug companies lie and cover up, and the drug companies know full well what these drugs do. I don't want to believe that GPs are 'in on it' but how can they not be after seeing patient after patient coming in and saying they need to go back on their tablets again? Anecdotal evidence is sometimes the strongest of all, but it's not seen as evidence at all by 'science'. Even 'scientific' evidence like that put forward by Robert Whittaker and the few psychiatrists or CEP UK speaking out against this nightmare is whitewashed, stonewalled, like they're all talking in a void. Don't doctors read?! Or are they brainwashed/paid into acquiescence by the drug companies, or is the government in on it too? There must be a lot of very powerful, influential people with money invested in drug companies. 

 

I'm just so angry at it all. I truly hope (I must still have some left!) that your petition gets the attention it deserves and things start to change, I really do. 

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JamesMoore

Hi there keepinghope, I do appreciate you taking the time to feed back and I completely understand your frustrations and the anger you feel at the harm caused. You are right, there are many that are permanently damaged by ssris/benzos/opoids and other drugs but equally, there are many that, with the proper tapering support, could come out unscathed from this. We need to represent the whole community as best we can. The podcast and the petition have their place in raising awareness but I've never pretended that they were a solution or that they would change anything on their own. I am all too aware of my limited abilities in this regard but they do have a place in raising awareness of damage and harm. You have every right to feel as you do and every right to take action that you feel is appropriate.

 

We also have to realise that many of these campaigns won't benefit us but will benefit people in the future. There is change in this but the wheels turn very slowly. There is room in this campaign for those that want the damage recognised and for those who want help for the future, we all come at this from slightly different angles and different places. As for the doctors, most are so frightened of being sued that they won't engage with anything that admits harm, not just for antidepressants but other drugs too. It's a difficult situation to challenge, but that doesn't mean we shouldn't try.

 

It's not a direct comparison of course, but there are many that are permanently damaged from drinking and from smoking, and many fatalities too. For years the alcohol and tobacco manufacturers fought any kind of limitation to their actives and refused to help pay for treatment/rehabilitation and support. They now fund rehabilitation schemes like AA, their advertising is restricted and their products are seen much more now as harmful, none of that would have happened without people speaking out, sharing their experiences and demanding something was done. I don't expect Pharma to do this voluntarily, but I expect that, one day, legislation will compel them to act. Unfortunately I cannot say when this will be. I feel a need to try and do something, if I really thought about the futility of it then I wouldn't bother, at the very least, the people I have interviewed have told me that just sharing their stories has helped them. At this stage, that's good enough for me.

 

I am so sorry to hear of you experiences. I do hope that you continue to listen to the podcast but I understand if it just makes you more angry and frustrated, that certainly was not the intention when putting it together. My very best wishes to you and thank you so much for sharing your views with me, it means a great deal.

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Cherry47

Keepinghope, I couldn't agree with you more! There must be a way to get the medical profession to sit up and take notice!

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