CAMPAIGNING AGAINST BENZOS

[[Te...]]

I hope so, too, Fiona! 

[[lo...]]

Spoke to a journalist today on one of the Scottish papers.  She will phone me back Friday.  :thumbsup:

 

Have decided to get my hair cut tomorrow - I just hope I can make it.  I really don't feel up to it but I don't want my photograph in the paper with my hair a mess as it is just now.

[[lo...]]

Have sent this to national (Scottish) paper and to national (Scottish) TV.  fingers crossed someone will bite.

 

COVERING EMAIL

 

Thank you for taking my call earlier today.  I am attaching a document with further information and appropriate web links.  This will save you time and you can decide whether or not you wish to follow this up.  I hope you will.  I think this issue is of immense importance to the health and well being of this country, as well as to the NHS/economy.

 

There are a number of facets to this - my own story and the loss of decades of my life to the drug nitrazepam.  The effects of the drug are so insidious that I did not even realise it was the drug that was making me so ill.  Sadly, there are many others like me across the UK.  It is estimated that over 1 million people may be dependent in the UK.  The withdrawal has been horrendous and I have no idea if I will ever recover.  There is little or no NHS support for sufferers.  Doctors seem to have no idea what they are doing to people either when they prescribe these drugs or when they ask them to stop taking them.  The scale of the problem is unknown - only estimates - doctors and Government do not see fit to collect the appropriate data. I rely on online support from fellow sufferers.  Thankfully I am computer literate.  Others might not be so fortunate. I am now in contact with three women in England, age 70, enduring a similar ordeal plus other women who are younger,

 

The inaction of doctors and government over five decades is appalling.  We now have an All Party Parliamentary Group in the House of Lords, thanks to Luke Montagu, future Earl of Sandwich, awarded over £1m damages recently due to misprescribing of psychiatric drugs.  His uncle, the Earl of Sandwich is also involved.  Will this finally result in some action?  Representatives of the Scottish Government have been invited to the next meeting on 24 November. I do not know if they will attend.

 

In Scotland, the prescribing of psychiatric drugs increases year on year despite evidence now showing that they are of little benefit to patients in the long term, in fact outcomes appear to be worse on medication.  Anti depressant withdrawal can be just as horrendous for some patients.  The Scottish Government attempted to curb prescribing but had to abandon its target in 2010.

 

And finally there is the costs of all this to the economy and the health service.  People are left disabled at worst by these drugs or unable to function properly.  I struggled to function physically and cognitively at work on a daily basis for 30 years.  It was terrible. I believed I had no choice.  I assumed I had a depressive illness, I did not realise it was nitrazepam was the underlying cause.

 

 

ATTACHED DOCUMENT

 

Youtube video 

 

I have recorded a video describing my experience of withdrawal.  It has been viewed almost 1,000 times on YouTube.  It is intended to provide hope to fellow sufferers.  There are many, many videos on this topic and you can see by the number of views that there are many people looking for information.

 

https://www.youtube.com/watch?v=30n_rzixn6M

 

I also have a website at www.nevertrustadoctor.wordpress.com where I have outlined my experiences and keep a blog.  I have written a book about my life.  This is all very well but only people who know me are interested and it does nothing to change things for the better.

 

 

My story - a life lost to prescription drugs

 

 

In 1975 I was prescribed 5 mg nitrazepam for myoclonic epilepsy.  I was 20 years old and attending teacher training college.  Within two months I had lost a great deal of weight and tried to commit suicide.  The next 10 years were HELL.  I was unable to function and was either in hospital, attending day hospital or at home in bed.  I was prescribed a variety of anti-depressants but they seemed to have marginal effect.  I came to the conclusion that there was no cure, this was going to be my life.  I started to function a little better, attending secretarial college, securing full-time work and eventually returning to University. I graduated at age 38, some 20 years after leaving school as a straight “A” student.  The next 20 years were spent working in the NHS.

 

Every single day of my life has been an immense struggle.  I have felt physically ill and have been cognitively compromised since I was a teenager.  The worst aspect has been the feeling of being ALONE for 40 years.  I could never understand why I felt that way no matter what the situation.  I could be surrounded by friends and family and the feeling was still there.  At age 60, I have finally found the answer.  It was the drug nitrazepam, the one I had consumed for 40 years.  The effect of this drug is insidious.  It impairs functioning to such a degree that one is only living a half-life.  No-one should have to live like that. Neither doctors nor patients realise the drugs are responsible for their ill-health, resulting in more investigations and more drugs, at great cost to the NHS.

 

In January 2012 I changed my GP practice and was advised to stop taking the drug. I tapered off 5 mg over three months.  This seemed a reasonable time period to me.  I followed the advice in the Ashton manual, produced by Prof Heather Ashton, Newcastle University.  http://www.benzo.org.uk/manual/

 

Strangely I had no withdrawal symptoms, nor did I have epilepsy.  I was very pleased.  For the next six months, I seemed to be more depressed than usual.  I was perplexed.  Retired and with no worries, why should this have happened?  By September, I was extremely ill and bedridden and I have remained there for two years.  The withdrawal symptoms have been horrendous.  It is now almost three years since I started my taper and I am still confined to bed 90% of the time.  I do not know if I will ever fully recover.

 

The withdrawal symptoms have been described as far back as the 1980s as can be viewed in this Brass Tacks documentary. One man describes the fear as worse than fighting in World War 2. These videos illustrate how long this issue has been in the media. And yet today nothing has been done to address this issue.  Patients continue to go through this withdrawal ordeal with little or no support.

 

Dangers of benzodiazapenes part 1: http://youtu.be/q2iZQ9tVSAU

 

Dangers of benzodiazepnies part 2: http://youtu.be/OWHKri71qaE

 

Similar problems are coming to light as patients try to withdraw from antidepressants.

 

www.survivingantidepressants.org

 

Neither my GP nor the psychiatrist to whom I was referred recognised that I was suffering from protracted benzodiazepine withdrawal syndrome.  Sadly I am not alone.  The only source of support has been the online forum www.benzobuddies.org which is run by a former sufferer, Colin Moran.  There I have met countless other victims of benzodiazepines from all over the world.  I now know three women in England, aged 70, suffering a similar ordeal. How many other women of this age are in the same position and do not have the computer skills to go online.  There is very little NHS support and very few support services across the UK, most of them small charities run by former sufferers. GPs seem to lack the necessary knowledge and understanding of this issue to be of much help.  They may not recognise the symptoms and may indeed prescribe more drugs to resolve them. A recent BMA report cites lack of GP training in prescribed drug dependence as an issue.  After decades of knowing about this problem, I am astonished and outraged.

 

BMA (2015) Prescribed drugs associated with dependence and withdrawal - building a consensus for action.

 

The website www.benzo.org.uk documents in detail the lack of action by public bodies over the decades. 

 

It is 50 years since benzodiazepines such as valium and librium first came onto the market in the 1960s.  They were regarded as wonder drugs and used to treat anxiety and insomnia.  By the late 1960s and early 1970s, the issue of dependence had become clear. Research by Professor Malcolm Lader suggested that brain damage may result from long-term consumption but no further work was done to confirm this.  www.benzo.org.uk/lader2.htm  More recent research has linked benzodiazepines to cancer, premature death and Alzheimer’s disease.  www.bmj.com/content/349/bmj.g5205  The UK government has failed to take action for decades.  The class action of the 1990s was thrown out by the Judge leaving thousands of patients stranded.  An All Party Parliamentary Group in the House of Commons did not result in any action of note.  There is now an All Party Parliamentary Group in the House of Lords which aims to address this issue. www.prescribeddrug.org  It is calling for better training for GPs on prescribed drug dependence, a national helpline, dedicated support services and more research.  It beggars belief that it is taking so long. Representatives of the Scottish Government have been invited to attend its next meeting on 24 November. 

 

Similar problems are being experienced by patients trying to withdraw from anti-depressants. www.survivingantidepressants.org  Yet one in seven people in Scotland are being prescribed these drugs.  It is now clear that the benefits of these drugs are minimal except perhaps in the short-term.  www.cepuk.org  The drug companies have done an excellent of job marketing their products to doctors and patients alike whilst concealing the truth about their wares.  Maximising profits is their primary goal.  The Scottish Government to their credit has attempted to reduce anti-depressant prescribing but had to abandon their target in 2010.  This is very disappointing.  The Scottish people deserve better. Counselling and other types of “talking” therapies are more effective than medication.

 

Many GPs in this country seem to have no idea what they are doing when they prescribe these mind-altering drugs. They do not understand the negative impact on people’s lives. Indeed they do not even seem to be aware of the fact that there is no scientific evidence whatsoever for the chemical imbalance theory.  This video which was uploaded to YouTube in 2011 by Dr Chris Steele who appears regularly on the TV Programme “This Morning” is an excellent example.  He is deceiving viewers and presumably himself as well. Despite critical feedback,  he has not removed it.

 

 

Research evidence now shows that patients do worse in the long-term on psychiatric medications compared to patients who stop their medication or never take it. 

www.cepuk.org

 

Facebook groups for benzo withdrawal

 

 

• Benzodiazepine Recovery

• Withdrawal Support Group

• Benzodiazepine Withdrawal

Benzodiazepine withdrawal success stories

• Protracted Withdrawal Syndrome from Benzodiazepines and Anti Depressants

• Benzodiazepine Withdrawal Christian Support

• Friends and Family of Benzodiazepine (Benzo) Sufferers

• V.A.B. (Veterans Against Benzodiazepines)

• Benzodiazepine DANGERS

• Benzodiazepine Addiction and Awareness

• Benzodiazepine Withdrawal Support Group in Japan

 

 

Action taken by me

 

I have written to my GP practice explaining to them what has happened to me and received a kind response.  I am too ill to go to the surgery.  I have written to the Chief Executive of Grampian Health Board outlining my experience and my concerns.  I have offered to make a video to be circulated to all GP practices in Grampian for training/information purposes.  I await a reply.  I have contacted several solicitors who are really not interested.  Medical negligence too difficult to prove.

 

I have contacted the Cabinet Secretary for Health about this issue and received a rather bland response which did not reassure me in the least. My story has been submitted to the All Party Parliamentary Group and to the British Medical Association. 

 

I have written to the Press and Journal, Aberdeen who have agreed to publish my story. I don’t know as yet how much they will write or what aspect they will focus on.  I can let you know as soon as I am informed. I have written to the BBC, the Herald, the Daily Mail, online or by email.  I don’t expect to hear from them.  I have contacted my MSP who has been of little use and my MP who is going to get back to me. 

 

[[lo...]]

Being interviewed this afternoon by Scottish TV.  It is a shame it will only be broadcast in Scotland and not the rest of the UK but it is a start.

 

Fiona 

[[be...]]

You are doing a wonderful thing, I will read all the links as I go along, but you will have a chance today to be heard, I wish I could hear and see it also. Sounds like someone has listened and now an interview, FANTASTIC.    You have worked hard for this CHEERS 

[[Mo...]]

Being interviewed this afternoon by Scottish TV.  It is a shame it will only be broadcast in Scotland and not the rest of the UK but it is a start.

 

Fiona 

 

Wish you knew how to record it Fiona.....its possible, quite easy I was told ....

but I'm clueless. good luck...

[[lo...]]

Hi Claudia

 

Might be available on STV on the web - I will ask.

 

Fiona 

 

 

[[Mo...]]

Hi Claudia

 

Might be available on STV on the web - I will ask.

 

Fiona 

 

[Guest [rh...]]

This is exciting! When will it be broadcast?

 

I don't have a TV licence so can only watch catch-up, but I will tell my parents and sister and best friend to watch, and I may be able to see on catch up.

[[lo...]]

Hi rhu and Claudia

 

Interview lasted half an hour.  Only two minutes will be broadcast on STV news though.  >  No idea which bits they will use. They are contacting other agencies in Scotland so it might not even be two minutes.  :'( :'( :'(

 

That is a lot of coverage apparently!!!!

 

I would like to see a whole documentary done again.  Haven't seen one for decades.

 

It will be on STV news website but only for a short time.  I will let you know.  I did ask for a copy of the whole recording.  Journalist said she would find out if that was possible.

 

Hugs

 

Fiona 

[[Mo...]]

Thanks Fiona, don't be disappointed pls.....better than nothing.

[Guest [rh...]]

Thanks for doing this.

2 minutes is quite a lot on the news I think.

I will look out for it. I also told my social worker.

 

I hope you feel better this evening 

[[lo...]]

Thanks, Claudia and rhu.  Yes apparently 2 minutes is a long time nowadays to be on TV.

 

Just spent an hour on the phone to a journalist at a national (Scottish) paper.  Very frustrating .  She did not seem to have read anything that I had sent her.  Even asked how to spell my name.  So not sure what to make of it all.  She was very keen to publish though but said it is the editor's decision of course.  She is aiming for a week on Sunday in Scotland on Sunday.  I dread to think what these people are going to say, I just have this feeling they will get the facts wrong.  I wish I could write the articles myself. 

 

What a minefield.

 

Ah well, we will see what transpires. By the time I get out of this bed everyone will have forgotten it was me in the paper.  :D

 

Hugs

 

Fiona 

 

[[sp...]]

Hello Fiona.

 

You are really on to something! Something big. snaps snaps to you!

 

I think about getting the word out all the time. I live in Texas and actually have a video editing business- VERY, VERY small scale and not for a television network.

 

My dream would be to see a documentary or film like The Insider.

 

Keep up your good work! Don't give up. You are doing something VERY important.

blessings to you.

susan

 

[[lo...]]

Thanks, Susan. 

 

I am sure you can do something too.  I am sure we all can, however small.  It all adds up.

 

The climate just happens to be right in the UK just now. 

 

Fiona  :thumbsup:

[[be...]]

lookingforward, good morning, can you tell me what STV stands for, now that I have a new commuter, I can do more things. Thank you for speaking out for all of us. 

[[lo...]]

Hi begood.  It is Scottish TV, the main TV station here.  I will post the link to my news item when I get it.  It will be next week some time.  It is great you have a new computer.

 

Fiona 

[[lo...]]

I am so pleased that another woman from Scotland is also being interviewed to appear on TV at the same time as me.  She has been left permanently damaged after tapering from effexor (don't know the details).  I feel less alone now in this campaign.  I really wanted the wider issue of A/Ds to be publicised as well so it seems that is  going to happen.  Still don't know when it is going to be broadcast though it is supposed to be this week.  :thumbsup:

 

Have seen a draft of the article for the local press.  It isn't very good but it is what I expected.  Just a bit about me, no attempt to discuss any of the issues.  I am putting in my email address so if some people contact me it will have served a purpose.

 

Fiona  :thumbsup:

 

[[lo...]]

Just to provide an update.

 

Scottish TV

 

Was on Scottish TV news last week but just for a couple of minutes.  It was okay.  My petition was shown on the screen and that has brought in about 30 more signatures which is nothing really.  Journalist tweeted petition as well.  Makes me wonder if there is anyone else out there in Scotland suffering from withdrawal!!!  :idiot:

 

Newspapers

 

I was featured in one of the Scottish Sunday papers but no photograph.  Only in paper version, not online.  Again it was okay.  A freelance journalist then contacted me and said he was going to write a piece about me.  Have no idea if I will end up in the gutter press!!  :(   I don't care any more, as long as I get publicity.  I haven't heard back from him.

 

Still nothing in the local paper. 

 

Magazines

 

A fellow UK buddie tipped me off about a woman's magazine I could try.  I went out and bought a copy and was pleased to see a two page spread about a young couple who had very sadly lost their baby due to a mistake made in hospital during delivery. So I have sent off my story.  Fingers crossed.

 

http://www.takeabreak.co.uk

 

Also contacted the UK homeless magazine, the Big Issue.  They don't have a very big readership.  46,000 they reckon.  Will wait and see what they decide.

 

APPG - House of Lords

 

The All Party Parliamentary Group meets tomorrow.  Keen to hear the outcome of that.

 

 

 

If I can't get a response from the public, I can't really go to Scottish Government saying this is a big problem.

 

Will wait and see.

 

Fiona  :thumbsup:

 

 

 

[[Mo...]]

Great job Fiona.....Scotland is lucky .

[[lo...]]

Thanks, Claudia.

 

Will keep trying.

 

Fiona 

[[be...]]

Thanks for what you are doing. 

[[Te...]]

Thank you so much, Fiona, for all of your hard work!!  :thumbsup:

[[lo...]]

Hi folks

 

Ok, not a lot of news on the campaign front here in Scotland.  Still writing to Tv programmes, newspapers and magazines. Just when I think I have run out of ideas I think of something else.

 

There are just over 100 members of the Scottish Parliament so today I started emailing every one of them about my campaign. Put the title of the campaign in subject heading. Didn't say who I was so they would have to read a bit to find out I am not actually one of their constituents.  :D  Of course I know that in most cases office staff will be reading the emails. So I thought well at least that means 100 more people in Scotland will be informed a little and 20 of them are likely to be on antidepressants so maybe some of them are in trouble with these drugs.  I am getting rather crafty in my old age.

 

So I have had two replies from MSPs themselves and one is going to write to the Cabinet Secretary for Health on my behalf. Because he replied I followed up with a little bit more information for him to read.  I only need one politician on my side and it could make a huge difference.

 

I have had one lady contact me with a very harrowing story of her ordeal with antidepressants so her story is now on the campaign website.

 

this is the first few steps of a very long journey.

 

Hugs

 

Fiona 

[[lo...]]

email to all MSPs

Action on Prescribed Drug Dependence (Scotland)

 

I wish to bring to your attention the campaign “Action on Prescribed Drug Dependence (Scotland)”.  It has been launched by myself with the support of Marion Brown and Ann Kelly of  the support group, Recovery and Renewal, Helensburgh.  I have been bedridden for two years after withdrawing from nitrazepam, Ann Kelly has been left disabled after withdrawing from the antidepressant, effexor.

 

http://actionpddwordpress.org

 

We are deeply concerned about the number of people in Scotland who are are being prescribed antidepressants, tranquillisers and sleeping pills as well as other psychiatric drugs.  One in five adults is now taking an antidepressant in Scotland and this figure is rising year on year. Yet rates of diagnosed depression are not increasing.  I find this very puzzling.  Research in England sheds light on why.  More patients are taking the drugs for longer.  Is this perhaps because they can’t stop taking them because of withdrawal symptoms?

 

Research now shows that antidepressants are of little benefit to most patients.  Even the Royal College of Psychiatrists states that only 50-65% of patients will benefit compared to 25-30% who are given a placebo pill.  Others argue that only 15% of patients will benefit.  Yet, many will suffer severe withdrawal symptoms if they attempt to discontinue their drugs.  No appropriate support services are available for such patients, yet services exist for illegal drug addicts.  I hardly think this  is fair.

 

https://actionpddwordpressdotorg.files.wordpress.com/2015/11/antidepressants-offer-no-benefit-over-placebo-010314-2.pdf

 

I have lived through the age of benzodiazepines such as valium and temazepam and a sorry saga that has proved to be for the UK Government.  Thankfully we now have an All Party Parliamentary Group on Prescribed Drug Dependence in the House of Lords.  Sadly, it has taken decades of talking to get to this point. Representative of the Scottish Government were invited to attend its most recent meeting on 24th November.

 

My interest in this subject if of course personal. I was prescribed nitrazepam 40 years ago for myoclonic epilepsy.  I assumed I would have to take it for the rest of my life.  At age 59, my GP advised me to stop taking it.  I have endured the most horrendous two years that you cannot even begin to imagine and remain largely bedridden because of withdrawal symptoms.  However, I am now psychologically and emotionally completely well after 40 years of depression and 40 years of taking antidepressants.  It is now abundantly clear to me that nitrazepam was making me ill for decades.  The antidepressants did nothing to alleviate that.  I felt alone for 40 years of my life and could never understand why I felt that way but now I know it was the drug.  I do not want others to have their lives totally ruined by mind-altering prescription drugs which bring no benefit, only pain.

 

I appeared on STV news last week along with Ann Kelly.  We would be very grateful for your support and interest in this subject.  We believe that the people of Scotland deserve better.

 

http://news.stv.tv/north/1332797-woman-addicted-to-prescription-drugs-for-40-years-robbed-of-life/

 

Kind regards