The Benzodiazepine Scandal PETITION PLEASE SIGN

[[lu...]]

Signed: hopefully one day benzos will be banned forever!

[[Mo...]]

Might have been in withdrawal.

 

It is so sad, so tragic, whatever the cause.

 

LF

 

He had a known history of severe mental illness and was not taking his medication -- to avoid losing his job apparently.

 

I wonder where this information comes from ?

Germans are not the brightest on the planet but even they wouldn't engage

a pilot with a severe mental illness, thats nonsense......so sorry,

 

He had a broken relationship which thousands of humans on this planet

get depressed about.. His bad luck was to be put on SSRIs and Benzos....

the rest is History, no point in making so much effort to defend these types of meds.......

we all know here how they work, better than any studies will ever do.......

[Guest [Ke...]]

KernowBeth, I'm curious to know why our votes won't count if we click the portion that says we want to remain anonymous. I've signed many, many petitions on other websites in the past, and as far as I know, my votes have always counted whether or not I chose to remain anonymous.

 

Can you please give me a reason why, with this particular petition, a vote would not be counted? Why would there be the option to remain anonymous if the vote isn't counted because of that reason?

 

I'm not sure really it's what I've been advised i.e. A petition should have named signatures if being presented to parliament. If not done on line then people have to give actual signatures. I will investigate further. Obviously the anonymous get counted on line but it means the same person could vote more than once? I think it looks more authentic with names anyway especially if printing out.

[[Mo...]]

Signed: hopefully one day benzos will be banned forever!

 

I'd say only used for emergencies and supervised by

a Benzo-Specialist.

[[Te...]]

Thanks, KernowBeth, for your info! I'm a pretty private person and worry that someone could look up my name and find out my address and other info about me easily online. Not that anyone would do that, but it is a privacy issue.

[Guest [Ke...]]

No worries Terry but certainly sign anonymously. We do need to get a lot more signatures if it's to make an impact. Thanks

[[Te...]]

Thank you. Yes, I signed. Thanks for posting the link!!

[[lo...]]

Hi Kernowbeth

 

Where else have you publicised the petition?

 

Just wondering.

 

Other benzo forums, benzo support charities.  I know there aren't many in the UK.

 

If it doesn't attract lots of signatures it may be that benzos are not causing "widespread" problems here in the UK,  horrendous problems yes for those suffering but maybe not for large numbers of people.  Who knows?

 

If it is more of a minority problem, a different strategy may be needed.

 

Keeping my fingers crossed for the petition. 

 

Well done on setting it up.

 

Hugs

 

LF 

 

 

[Guest [Ke...]]

Hi LF, It's on Facebook and been shared by some friends. It's also on my Facebook Group, Beating Benzos and my Twitter feed etc. On the Home page of my website as well. I will put it on other Facebook groups I belong to.

I'm busy sending out letters and getting feedback. It's interesting that, in the UK, doctors are given clear guidelines on the use of Benzos and on Withdrawal through NICE but sadly few follow these.

Oh, and I'm half way through my book  so lots going on. Any further suggestions welcome as I'm pretty determined now!

[[lo...]]

You are doing a great job. 

 

Do we know what is happening with UK benzo prescribing nowadays?

 

I never seem to find good info or if I have I've forgotten.

 

I know we have over 1 m people estimated as dependent but don't know if they are long term benzo users.

 

I spoke to a friend today. She signed the petition. She said you can add comments, see who has signed and tick a box if you want your name not to be shown.  None of that shows up on my tablet.  Just the box for name, address etc.

She was on her IPad.  Very strange.

 

I wanted to see if my friends had signed.  I know quite a few have because they got back to me.

 

Hugs

 

LF 

 

 

 

[Guest [Ke...]]

It's very slow LF and I'm not sure we're going to get enough signatures. I want something done now as its already been nearly 40 years since the dangers of Benzos were recognised and still doctors prescribe the drugs for months on end. I was prescribed sleeping tablets for forty years with no review just more Benzos added for the anxiety that was caused by the sleeping tablets. Unless there's enough signatures it will be just another damp squib. So many have tried and failed before me. It has to change but it needs thousands to push for this or nobody listens.

[[lo...]]

I know what you mean, Beth.  However, trying to get thousands of folk interested may not be the way.  I don't know of course, I may be wrong.  I think our personal stories may be more powerful because of the tragedies they have been.  Maybe we need to target the medical profession directly.

 

A book is great for sufferers but sadly doctors probably won't read it.  :'(

 

I still think direct communication with GP practices might be good.  If they all have email addresses it would not be so hard.  Maybe 1,000 or so.  Sounds a lot but not really.  It might just alert some of them.

 

Also the Royal Colleges - GPs/psychiatrists. 

 

Health Boards. Not sure what you have in England.  They all seem to have guidelines/protocols for benzo withdrawal. You can get doctors' names on the documents. I found my local one.

 

The Deaneries.  They are responsible for medical training.  There are 4 in Scotland. North, East, West, South East.  I can get a list for England. Wales is a single Deanery.

 

This was my employer to give you an idea.

 

http://www.nes.scot.nhs.uk/education-and-training/by-discipline/medicine/about-medical-training/our-deanery.aspx

 

I worked in the North of Scotland Deanery for 20 years.  The current Dean is retiring soon.  My former boss, a lovely man, has applied for her job!    he would be a great help if I asked whether he gets the job or not.  He is Associate Dean just now.  He is a pathologist!

 

I know they get patients in to talk to trainee GPs here in Aberdeen.  Must do that everywhere.

 

And an English Deanery.  Dean for GP training - Julia Oxenbury.  The big English Deaneries are huge compared to the Scottish ones.

 

http://primarycare.peninsula.pgme.carboncrayon.com/contact/

 

 

There are also patient representation groups that type of thing.

 

If we could combine our stories in a single document - better than a single story - and circulate to as many places as possible. To educate, not to blame.  There are wider messages for doctors  in our stories, not just the benzo story.  About misdiagnosis.

 

There are quite a few folk on BB from the UK.

 

I am happy to do what I can.  Brain still fuzzy but I can do lots of things.

 

What do you think?

 

If we keep chatting here others might chip in.

 

Maybe approach the media.  I am not well enough as yet but soon maybe.

 

Lots of possibilities.

 

Will keep thinking.  :thumbsup:

 

I could do a draft document if you send me your story.  You can focus on your book. 

 

Maybe we should draw up an action plan. :thumbsup:  

 

You just never know where it may lead.

 

 

Hugs

 

LF 

 

 

 

 

[Guest [Ke...]]

My story is all on my website as well as those of some others. Also my letter to various authorities adapted from Dr Jennifer Leigh's letter, a US sufferer,  with her permission.

 

I am circulating this letter and so far it's gone to the Minister of Health, PM, Chief Medical Officer, Health Authorities, Local MP, Daily Mail and Daily Telegraph. We are also going to focus on doctors surgeries.  My book is for me to get it all off my chest 😁. The Petition is just another way to raise awareness. My website pages have nearly received 30,000 hits so that must mean something.

 

I don't intend to attack doctors although my book does. I really want to get them to understand that they must follow the NICE guidelines in this. It's all written down in black and white for them to read but do they, huh! I'll find the link to the NICE guidelines and post. There's so much out there already that I just can't understand how doctors can bury their heads in the sand any longer. My husband is working alongside me. There was a Panorama programme on all this in 2002 I think but still nothing has been done and people are still being prescribed Benzos for months and years on end with no help to withdraw. I think it's only by getting laws changed that this situation will improve. Research and raising awareness and getting the Government to listen is a first step to limiting prescribing. Once doctors can be sued as they've broken the law that's when all this will stop for good.

 

Thanks for your input LF. As you can see I'm in fighting mode now I'm recovering and my brain is coming back on line! Keep the suggestions coming and spreading the word. 😃👍

[[lo...]]

Oh wow, Beth,  that is absolutely amazing.

 

Are you just focusing on England?

 

Another possibility is the organisers of medical education conferences. May be a long shot.

 

ASME is based in Dundee. Organises UK annual conference.

 

http://www.asme.org.uk/

 

Annual European conferences, organised in Dundee.

 

http://www.amee.org/conferences

 

GPs, worldwide annual conferences

 

http://wonca2015.org/

 

Just a thought.  Worth trying.

 

 

[Guest [Ke...]]

We will take a look. For the moment we're focussing on England but will expand to the whole of the UK no doubt. Here's the link to NICE guidelines that GPs should be following. My husband has a double appointment with my own GP this afternoon to sound out his reasons for prescribing the drugs for me with no review and against these guidelines. There's also guidelines on repeat prescriptions which are interesting!

 

http://cks.nice.org.uk/benzodiazepine-and-z-drug-withdrawal#!scenario

[[lo...]]

You are a one woman whirlwind.  :)

 

Hope I have your energy when I am better.

 

Keep us posted on how you are getting on.

 

Or is that on your blog?

 

Can you post link here again.

 

Hugs

 

LF 

 

 

[Guest [Ke...]]

Here's some more....

 

http://cks.nice.org.uk/benzodiazepine-and-z-drug-withdrawal#!scenario

 

There's so much to inform doctors of the facts. It really does need investigating as to why they don't.

[Guest [Ke...]]

Yes all on my Blog...Recovery Blog 5.

[[lo...]]

Thanks

 

Can you post link to your blog?

[[Mo...]]

Yes all on my Blog...Recovery Blog 5.

 

Wow R, I've just been to your Blog, congrats...most impressive.

signed the guest book, will tell my story when I've recovered.

congrats .

 

F ? look at the signature ...its all there...

[Guest [Ke...]]

Thank you Morreweg, I've answered you. We will win through 

[Guest [Ke...]]

The link to my Blog is in my signature here LF. xx

[[Mo...]]

Thank you Morreweg, I've answered you. We will win through 

 

Thank you Beth, its the most elegant website I've come across....

classy...I like it. 

[[lo...]]

Too much cog fog, Beth!  Ok, you have got me going.  Just sent my letter to my GP practice.  And now I am very sad.

 

Tried to keep it to 2 pages.  hope it is ok to post in your thread.  Could have started a new one but thought it might be good to insert here. Will put in a separate thread too.

 

Regurgitating it all is not good at all. >

 

 

 

 

Dear Dr Aitchison and partners

 

Re Protracted Benzodiazepine Withdrawal Syndrome

 

I have now been bedridden 95% of the time for 21 months due to the above.  It has been a terrible experience.  I hope that by explaining in writing what has happened to me, you and the other GPs in the practice will be better equipped to help other patients who are withdrawing from benzodiazepines.  It might also aid appropriate diagnosis. However, my story really started 40 years ago and I think it is important to go back to the beginning of my story.

 

In 1975, age 20, I was diagnosed as having myoclonic epilepsy and prescribed 5 mg of nitrazepam.  I immediately became hyperactive, working all day and dancing to the early hours in a holiday camp.  I lost about 2 stones (8.5 to 6.5) in 8 weeks, returned to pre puberty state and tried to commit suicide. Diagnosed with depression, no connection was made to the nitrazepam. The next 10 years were HELL.  In patient / day patient treatment followed under various psychiatrists primarily Dr Ken Morrice, Prof George Ashcroft. I was pretty well non functional and could not work.  Had to abandon my degree studies. Disastrous marriage to a fellow patient. Muliple suicide attempts.  Aggression.  Agoraphobia, monophobia, anorexia, compulsive eating etc etc.

 

At age 30, I started to claw my way back into life.  Part time college, full time college, full time work, divorce sadly, and university, graduating in 1994. Worked in research in the NHS for 20 years thereafter.  I interpreted this long process as "getting better".  I was by then seeing Dr Le Poidevin, psychotherapist, who undoubtedly assisted in getting me functional again. However, there has not been one day in the past 40 years free from depression.  Unable to connect with my own emotions, I sought refuge in my work and gained great satisfaction from it.  I have however missed out on so much in life. Too depressed to have children, for example.  Unable to enjoy all the normal things in life, particularly close relationships.

 

Moving on to 2012.  I joined Calsayeat Practice as it was nearer home. Had been with Elmbank Practice for over 30 years. At my first consultation with Dr Neil Adams it was suggested I stop taking nitrazepam.  I was not very keen as I was scared this would exacerbate my depression. I had recently taken early retirement for health reasons including depression.  Despite my misgivings, I decided to try it.  I reduced 1/4 of 5 mg once a month so tapered over three months. I had no apparent withdrawal symptoms nor did I have symptoms of myoclonic epilepsy so I was very pleased. However, I did become more depressed and this lasted about six months. I did not link it to nitrazepam withdrawal but was puzzled as to why it was happening.

 

I also experienced almost continuous sexual arousal during those six months and did link that to stopping nitrazepam. Then in September 2013, I was hit with a barrage of physical symptoms which rendered me bedridden for 21 months. The worst symptoms have been numbness in legs, feet, anus, vagina, lasting 12 months. Loss of bowel control during that time. Then unbearable nerve pain in all these areas, lasting about six months. Also continuous head pressure and squeezing sensations inside my brain for 20 months.

 

I am still unable to read more than a few paragraphs or watch tv.  Short term and long term memory have been very poor throughout these 21 months but have recently improved a great deal. I was unable to use a computer for many months. My concentration is much better now. 

 

Emotionally and psychologically, I am once again the person I was 40 years ago. I have had no depression since Sept 2013. I am no longer taking anti depressants. I have never felt lonely or alone since becoming bedridden. This is despite the fact I live alone and have seen friends only once a month on average since this started. I am in no doubt at all that this is due to the cessation of nitrazepam.

 

All in all, it is a pretty sorry tale.  I was very disappointed at the reaction of Dr Paul Sclare to whom I was re-referred by yourself in 2014.  His diagnosis of ME mystified me.  My symptoms are clearly consistent with protracted benzodiazepine withdrawal syndrome as outlined by Prof Heather Ashton, University of Newcastle.

 

www.benzo.org.uk/manual/

 

 

Apart from my very good friends, my main source of support has been the online support forum

 

www.benzobuddies.org

 

I don't know how much longer this process is going to take. I expect to make a full recovery. I can now walk for a few minutes outside, limited not by physical weakness but by a malfunctioning brain. Sleep remains totally disrupted. Currently awake by night, asleep by day most of the time. 

 

Life is too short to look back.  Looking forward with optimism is the only way. I would, however, like to think that my story might just help someone else.

 

Kind regards

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

[Guest [Ke...]]

Wow, LF and many thanks for posting that. Could I use your story on my website removing all places and names? it's a story of suffering as well as hope. My husband is with my GP at the moment updating him on my story and asking why this is still allowed to happen so many years after they were advised on the dangers of benzos. I await the answers.

 

I do hope your practice sits up and takes notice. My concern is that they will just continue to invent their own smoke screens to hide behind. Good Luck  xx