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JamesMoore

Petition calling for tapering kits in the UK

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powerback

IGNORANCE IS BLISS FOR MOST OF THESE DOCTORS .its up to us to show and tell them the damage that's caused from these drugs ,its going to be a very long road for it to seep out.

All of us here is the start of the road and in the wider world there is serious criticism to psychiatry.

 

 https://www.madinamerica.com/2017/04/group-plans-protest-world-congress-psychiatry/.

 

Group Plans Protest Against the World Congress of Psychiatry

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keepinghope

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.

 

You're right James, we should try, and I'm sorry if I came across as belittling what you were doing at all - I greatly admire what you're trying to do and I have been listening to the podcasts - I wish I had your motivation! As someone else on here said, I've been especially enjoying the personal history podcasts for the sheer fact that they make me feel a bit less alone. If you're looking for anyone else to share their story I'd be very much willing to, and if it can help just one person it will be worth it. I have a bad tendency to look at the big picture with all it's obstacles and immediately give up, whereas I think you're doing the right thing, small steps to eventually grow a bigger movement/awareness, it's a tortoise and the hare game. 

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powerback

Hi keepinghope I agree with every letter .there really is no end to the madness and ignorance of human beings. On a positive note at least us on this site are making an effort to change and set a path of difference we need to hold on to that.

I'm disgusted by doctors ,I would never judge them personally but I've told my partner I can't be in the company of any of them and she totally respects that .

There's a serious societal snobery going back centuries when it comes to these professions and this has to change ,we believe what they tell us,next generations need to be educated correctly to distinguish between fact and fiction .

 

The problem is these doctors can't see the wrong ,they learn in college and that's it and who sponsors the college,big pharma ,I'm laughing here it's so painfully funny (I've a dark sense of humour),and they say Scientology it's nuts .

Take care and always keep strong

PB

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bubbles

I like the principle of these tapering strips, but I have two reservations about this particular study. I'll post them in the appropriate thread about that paper.

 

 

 

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Altostrata

@JamesMoore I found this article. Are tapering strips now available in the UK?

 

Dutch website selling tapering kits for coming off antidepressants launches English-language version

The Pharmaceutical Journal 12 JUL 2017 By Debbie Andalo

 

Patients in the UK will be able to buy kits containing prescription-only medicines from the website without a prescription, but the MHRA warns that self-medication is potentially risky.

 

An English-language version of a Netherlands-based website which sells kits to patients to help them wean themselves off antidepressants and other psychiatric drugs has been launched.

 

Each kit includes a tapering strip of medication packaged in a roll of small daily pouches. Each pouch is numbered and has the same or a slightly lower dose than the one before.

 

Tapering strips — designed for a 28-day cycle — are available for a number of antidepressant, antipsychotic and sedative medicines; strips for weaning patients off lithium and tramadol are also available.

 

Patients can use the strips to regulate their dose reduction over time, according to the website; information printed on each pouch allows them to precisely record and monitor their progress.

MHRA concern

The UK medicines regulator confirmed today (Tuesday 11 July) that it is aware of the site, but as it is hosted in the Netherlands it has no jurisdiction over it.

 

The Medicines and Healthcare products Regulatory Agency (MHRA) has, however, contacted the Dutch regulatory organisation, the Medicines Evaluation Board, to discuss the site.

 

A MHRA spokesman explained that it is open to a UK patient to buy a kit from the website. Because the purchase is being made outside the normal UK drug supply chain, a UK prescription is not required — even though the strips are made up of prescription-only medicines (POMs).

 

“Although POMs can be imported for personal use, self-medication is potentially risky and we advise against this,” he said.

Dutch initiative

The new website is an English-language version of an established Dutch site, which has been developed in a collaboration involving pharmacist Paul Harder from the Regenboog Apotheek, the charity the Cinderella Therapeutics Foundation and the user research centre at the department of psychiatry and psychology at the University of Maastricht. All are based in the Netherlands.

 

Harder told the Pharmaceutical Journal that medication would not be prescribed to patients in the UK without a prescription.

 

He said: “Patients in the UK should ask their doctor to fill in an order form on the website, this serves as a prescription. The GP must sign the form and provide their medical registration number along with contact details.”

 

However, Harder was not able say how he would verify the credentials of the person signing the form, as no formal arrangement had been made with the medical profession in the UK.

....

Dr Peter Groot, from the university’s user research centre, said it had decided to launch the English-language version of the site following contact with lobby groups and individuals in the UK who are campaigning for more help to support patients who want to be weaned off psychiatric drugs.

 

He told The Pharmaceutical Journal: “This is something that we had planned for some time ago. This problem [weaning patients safely off psychiatric drugs] has been known for a long time. The problem for doctors and pharmacists is that the right medicines for tapering are not [readily] available.”

....

A change.org.uk petition by James Moore — who has personally battled to come off drugs prescribed to treat his depression and anxiety — calls on the UK government to allow tapering strips to be made available to help patients weaning themselves off psychoactive drugs. It has attracted 2,072 signatures.

 

Moore said: ”This is groundbreaking work from a highly respected academic institution and it needs support and for the regulators to get properly engaged rather than focus on prohibition. Patients have little option when they withdraw and the Royal College of Psychiatrists found that 63% of people taking antidepressants suffer withdrawal effects and many suffer for prolonged periods. There are even cases where users have taken their own lives because of the severity and protracted nature of withdrawal.”

  • 13 July 2017. 17.40. This story was updated to include comments from Paul Harder and James Moore.
 

 

 

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JamesMoore

Hi @Altostrata thanks for your message. Tapering Strips are available in the UK and it is perfectly legal to import medicines from Europe to the U.K. for personal use, pre Brexit anyway. The laboratory involved, Cinderella Therapeutics, have been investigated by the MHRA and found to comply with all legislation, this link tells you more..

 

https://www.pharmaceutical-journal.com/news-and-analysis/news-in-brief/dutch-tapering-kits-website-has-not-broken-law-mhra-concludes/20203849.article

 

However, to order Tapering Strips, the person requesting them must supply an NHS or private prescription signed by a registered doctor. There is also a cost for each strip of 28 days, but the Netherlands team provide them at cost, they make no profit at all for this work and the development costs were provided by Maastricht University. So it is a case of finding a sympathetic doctor/psychiatrist really. Also, while Tapering Strips are probably not much use for those that have been on the drugs for many many years, or for those who are particularly sensitive to withdrawal effects, I believe they are a valuable addition to the options available for people who would like to withdraw slowly. I am sure you have seen it already, but Mad in America recently wrote up the latest available Tapering Strip study:

 

https://www.madinamerica.com/2018/05/tapering-strips-help-people-discontinue-antidepressants/

 

If people would like more information, such as how long one can choose to take to reduce or what drugs the strips are available for, all this information can be found on the ordering forms available from the official website:

 

http://www.taperingstrip.org/

 

I hope that is helpful but do let me know if I can advise further. 

 

 

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bubbles

Thanks @JamesMoore

 

I see that Maastricht University is the body that developed these. They're also the university, I think, where Will Hall is doing his antipsychotic study? They're obviously a university doing useful things for the likes of us.

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Altostrata

Thank you, @JamesMoore. In my correspondence with Dr. Groot, he said the length of taper using the strips is very flexible. He said he learned from this site that people might need much longer to taper from paroxetine, for example.

 

One might start out with a month trying the rate of a 6-month taper, and if that's too precipitous, the next month get a prescription for a strip designed for a 10-month taper. On page 8 of the tapering guidelines (pdf download):
 

Quote

 

4. Stabilisation

An additional and unforeseen advantage of the development of tapering strips is that it is now possible to start the tapering of drug doses down from all possible doses, and to prescribe them in all possible doses, including doses that differ from the standard registered doses available at the pharmacy (Figure 3).

 

 

 

 

For Dr. Groot's tapering curves, see

 

Is that your understanding how this might work? If this is so, we might routinely recommend using tapering strips to people in the UK and Netherlands.

 

PS I added links to the related topics in post #1 of this thread.

 

On 9/1/2016 at 3:06 AM, JamesMoore said:

 

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bubbles

I know my pharmacist here in Australia can't get anything that isn't approved for use in Australia, but I wonder if it would be possible to import it for personal use. I think there are rules about bringing things in for some period - 3 months' use, maybe? I'll have to do some investigating.


I also wonder if they're doing really slow tapers like recommended here. Or if they would if requested.

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