Not so good news from the UK

Outcome of meeting between BMA and APPG on PDD with Department of Health not positive.  No commitment to provide helpline or services.  Insufficient evidence of demand.  I am beyond livid of course.  We have a new Minister of Health who is trying to get to grips with his new job!!! 

 

All I can hope for is that our current Government is ousted at the next general election, it certainly seems likely the way things are at present.

 

Sorry not to have better news. 

 

Fiona 

That's really awful to hear, Fiona! So sorry to learn this, and angry, too! 

Good grief Can't believe they said there's insufficient evidence of demand-that's absurd!  So sorry to hear this Fiona.

It's hard to believe that after a 44-page document was produced last fall with major input from all concerned stakeholders, there's still "no evidence" of demand. Sad, indeed.

It is outrageous.  I am trying to write an open letter to a major national (UK) newspaper ....

 

Also the Daily Mail has postponed publishing more about benzo suffering from tomorrow (W-BAD) to next week.

 

But we are getting more letters published in the medical journals.

 

And we keep fighting.

 

Fiona  :thumbsup:

Your efforts are impressive, Fiona! Good work! As you say, maybe the next election (so much action over there!) will bring change.

Working on an open letter ... no holds barred now ... the gloves are off ...  might be a bit long for a newspaper!!!!!  :D

 

 

Open letter to the Departments of Health, UK Governments

 

Prescribed Drug Dependence is a most urgent and pressing national issue

 

Sir

 

As members of Prescribed Harm UK, we wish to draw attention to the plight of the many patients seriously harmed by prescribed drug dependence (PDD) and withdrawal.  We are a hidden community, many severely disabled, fighting for recognition, respect and justice.  Some of us are bedridden, many are too sick or too afraid of their doctors to complain.  We have withdrawn or are trying to withdraw from a variety of psychiatric drugs which includes antidepressants, benzodiazepines and antipsychotic drugs.  We have taken these drugs as prescribed, some for decades.  Our stories share common ingredients.  A visit to a GP, a prescription, minimal information about the drug prescribed, trusting medical advice, adhering to instructions, thinking we were doing the right thing.  Side effects, a change of drug, more drugs, more side effects and eventually withdrawal, often after years or even decades of ill health.  Caught between a rock and a hard place, sick on the drugs, sick trying to come off them.  And abandoned by those who have prescribed them in the first place.  Labelled as being mentally ill or diagnosed with “Medically Unexplained Physical Symptoms” or other such diagnostic label designed to obscure, doctors are legally protected, patients are left distraught and with nowhere to turn.  The only course of action is to turn to the media in a desperate bid to be heard, risking barbs that we are “publicity seekers”.

 

This situation is of course nothing new.  The introduction of benzodiazepines in the 1960s saw millions of unsuspecting patients “hooked” on sleeping pills and tranquillisers, the “opiates of the masses”.  By the time the addictive properties were recognised it was too late.  A class action against the drug companies and the Department of Health came to an abrupt halt because it was costing too much in legal aid.  Prescribing rates subsequently increased.  The Government prescribing guidelines of 1998 stipulated 2-4 weeks but these were largely ignored.  Patient safety was clearly no-one’s priority.  Decades of campaigning for justice by veterans such as Barry Haslam, former chairman of Oldham Tranx, resulted in local services being provided but no national strategy to adequately address the problem.  The internet and social media has enabled patients to find a voice, albeit one that continues to be ignored by those in positions of power.

 

Antidepressants entered the market with great fanfare and were said to be non-addictive by the companies producing them. The success of these drugs has been built upon the misleading marketing tactics of the pharmaceutical industry, particularly the notion that a “chemical Imbalance” in the brain causes depression.  Of course there is no scientific evidence to support this and never has been.  Clinical trial data were manipulated, the benefits exaggerated, the harms minimised.  (1) www.cepuk.org

 

Ref:  http://www.bmj.com/content/357/bmj.j3129/rr-5

 

Today, antidepressant prescribing is frequently in the news, particularly as it increases unabated, a trend that is defended by leading doctors. (2)  Yet there is now substantial evidence that these drugs perform little better than placebo pills for most patients with only 25-30% improving over three months. (3) This is hardly impressive.  It most certainly does not warrant the medicating of millions of patients when the harms are unknown.

 

The issues of dependence are well-known among the small number of charities that offer help and support and the online communities of patients who are finding it extremely difficult to withdraw from these drugs.  The British Medical Association (BMA) has declared PDD as a public health issue which demands Government attention.  The Department of Health remains unwilling to fund a much needed helpline and specialist services to assist patients withdraw safely from prescription drugs of dependence.  Funding is instead focussed on helping patients give up drug and alcohol addiction.  Perhaps the focus on addiction helps to divert attention away from the issue off PDD and the responsibility of the drug companies and the medical profession in creating the situation we are now in.  The number of addicts are estimated regularly, little attempt is made to do the same for PDD patients.  Instead their difficulties are concealed by misdiagnosis and further drugging or mislabeling as mentally ill.

 

And so PDD patients have to fight for their lives.  James Moore’s petition for tapering kits now has over 2,000 signatures and his weekly podcast on issues of withdrawal is extremely popular.  http://www.jfmoore.co.uk

 

Claire Hanley is the first UK patient to use a tapering kit produced in The Netherlands by Dr Groot.  Claire has been sick for .... years etc.  Dr Groot has done what no drug company has been prepared to do, give  patients an opportunity to taper slowly and safely.  Patients of course will have to pay for this privilege.  Many will be unable to afford it.  This is in contrast to the provision of methadone for drug addicts to help them address their illegal drug addiction habits. 

 

Marion Brown has recently submitted a petition to the Scottish Parliament requesting appropriate services for PDD patients.

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

 

And so we, the members of PHUK, ask:

 

Why are patients who have been harmed by prescription drugs denied appropriate help and support? Is it really a lack of funds or is it more likely that vested interests would prefer we were kept silent? 

 

When millions of patients are prescribed drugs of dependence by their doctors, drugs which can cause significant harm, the many thus harmed cannot keep silent.  The clamour will only grow louder as the gross injustice of this situation becomes common knowledge. 

 

Surely the cost of a helpline and specialist services to enable patients to break free from damaging pharmaceutical products is better than maintaining those patients on these same drugs for the rest of their lives, causing ill-health and disability for many and reliance on disability benefits.

 

To do a proper cost-benefit analysis would take tremendous effort.  Not even basic data have been gathered by successive governments.  Perhaps this is deliberate.  Decades of inaction cannot just be attributed to incompetence.

Fabulous letter, Fiona! Top notch! Has it been sent or published?

Excellent letter, Fiona!! Very good, forceful (you mean business, and it shows), gets the point across very clearly. Certainly they cannot ignore something like this! They'd be stupid to do so.

Working on an open letter ... no holds barred now ... the gloves are off ...  might be a bit long for a newspaper!!!!!  :D

 

 

Open letter to the Departments of Health, UK Governments

 

Prescribed Drug Dependence is a most urgent and pressing national issue

 

Sir

 

As members of Prescribed Harm UK, we wish to draw attention to the plight of the many patients seriously harmed by prescribed drug dependence (PDD) and withdrawal.  We are a hidden community, many severely disabled, fighting for recognition, respect and justice.  Some of us are bedridden, many are too sick or too afraid of their doctors to complain.  We have withdrawn or are trying to withdraw from a variety of psychiatric drugs which includes antidepressants, benzodiazepines and antipsychotic drugs.  We have taken these drugs as prescribed, some for decades.  Our stories share common ingredients.  A visit to a GP, a prescription, minimal information about the drug prescribed, trusting medical advice, adhering to instructions, thinking we were doing the right thing.  Side effects, a change of drug, more drugs, more side effects and eventually withdrawal, often after years or even decades of ill health.  Caught between a rock and a hard place, sick on the drugs, sick trying to come off them.  And abandoned by those who have prescribed them in the first place.  Labelled as being mentally ill or diagnosed with “Medically Unexplained Physical Symptoms” or other such diagnostic label designed to obscure, doctors are legally protected, patients are left distraught and with nowhere to turn.  The only course of action is to turn to the media in a desperate bid to be heard, risking barbs that we are “publicity seekers”.

 

This situation is of course nothing new.  The introduction of benzodiazepines in the 1960s saw millions of unsuspecting patients “hooked” on sleeping pills and tranquillisers, the “opiates of the masses”.  By the time the addictive properties were recognised it was too late.  A class action against the drug companies and the Department of Health came to an abrupt halt because it was costing too much in legal aid.  Prescribing rates subsequently increased.  The Government prescribing guidelines of 1998 stipulated 2-4 weeks but these were largely ignored.  Patient safety was clearly no-one’s priority.  Decades of campaigning for justice by veterans such as Barry Haslam, former chairman of Oldham Tranx, resulted in local services being provided but no national strategy to adequately address the problem.  The internet and social media has enabled patients to find a voice, albeit one that continues to be ignored by those in positions of power.

 

Antidepressants entered the market with great fanfare and were said to be non-addictive by the companies producing them. The success of these drugs has been built upon the misleading marketing tactics of the pharmaceutical industry, particularly the notion that a “chemical Imbalance” in the brain causes depression.  Of course there is no scientific evidence to support this and never has been.  Clinical trial data were manipulated, the benefits exaggerated, the harms minimised.  (1) www.cepuk.org

 

Ref:  http://www.bmj.com/content/357/bmj.j3129/rr-5

 

Today, antidepressant prescribing is frequently in the news, particularly as it increases unabated, a trend that is defended by leading doctors. (2)  Yet there is now substantial evidence that these drugs perform little better than placebo pills for most patients with only 25-30% improving over three months. (3) This is hardly impressive.  It most certainly does not warrant the medicating of millions of patients when the harms are unknown.

 

The issues of dependence are well-known among the small number of charities that offer help and support and the online communities of patients who are finding it extremely difficult to withdraw from these drugs.  The British Medical Association (BMA) has declared PDD as a public health issue which demands Government attention.  The Department of Health remains unwilling to fund a much needed helpline and specialist services to assist patients withdraw safely from prescription drugs of dependence.  Funding is instead focussed on helping patients give up drug and alcohol addiction.  Perhaps the focus on addiction helps to divert attention away from the issue off PDD and the responsibility of the drug companies and the medical profession in creating the situation we are now in.  The number of addicts are estimated regularly, little attempt is made to do the same for PDD patients.  Instead their difficulties are concealed by misdiagnosis and further drugging or mislabeling as mentally ill.

 

And so PDD patients have to fight for their lives.  James Moore’s petition for tapering kits now has over 2,000 signatures and his weekly podcast on issues of withdrawal is extremely popular.  http://www.jfmoore.co.uk

 

Claire Hanley is the first UK patient to use a tapering kit produced in The Netherlands by Dr Groot.  Claire has been sick for .... years etc.  Dr Groot has done what no drug company has been prepared to do, give  patients an opportunity to taper slowly and safely.  Patients of course will have to pay for this privilege.  Many will be unable to afford it.  This is in contrast to the provision of methadone for drug addicts to help them address their illegal drug addiction habits. 

 

Marion Brown has recently submitted a petition to the Scottish Parliament requesting appropriate services for PDD patients.

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

 

And so we, the members of PHUK, ask:

 

Why are patients who have been harmed by prescription drugs denied appropriate help and support? Is it really a lack of funds or is it more likely that vested interests would prefer we were kept silent? 

 

When millions of patients are prescribed drugs of dependence by their doctors, drugs which can cause significant harm, the many thus harmed cannot keep silent.  The clamour will only grow louder as the gross injustice of this situation becomes common knowledge. 

 

Surely the cost of a helpline and specialist services to enable patients to break free from damaging pharmaceutical products is better than maintaining those patients on these same drugs for the rest of their lives, causing ill-health and disability for many and reliance on disability benefits.

 

To do a proper cost-benefit analysis would take tremendous effort.  Not even basic data have been gathered by successive governments.  Perhaps this is deliberate.  Decades of inaction cannot just be attributed to incompetence.

 

 

Very powerful document, Fiona! Thanks for sharing. I really hope they will finally recognize the problem. I think such document should be published in a journal with high impact factor.

Sorry to hear this news Fiona, but thank you so much for your tenacity in all this.  I don't see how you do it seeing how you've been so sick yourself.  I admire and appreciate you so much!  Your letter is ACE!!!

 

Lilly555

Brilliant letter Fiona!  I hope it gets printed and widely read.

Disappointing news, Fiona, but very strong letter, excellent! 

Thank you, everyone.  I have revised the letter a little bit and am now gathering signatures from the UK.

 

OPEN LETTER - REVISED COPY. 

 

Open letter to the Departments of Health, UK Governments

 

Prescribed Drug Dependence is a most urgent and pressing national issue

 

As members of Prescribed Harm UK, we wish to draw attention to the plight of the many patients seriously harmed by prescribed drug dependence (PDD) and withdrawal.  We are a hidden community, many severely disabled, fighting for recognition, respect and justice.  Some of us are bedridden, many are too sick or too afraid of their doctors to complain.  We have withdrawn or are trying to withdraw from a variety of psychiatric drugs which includes antidepressants, benzodiazepines and antipsychotic drugs.  We have taken these drugs as prescribed, some for decades.  Our stories share common ingredients.  A visit to a GP, a prescription, minimal information about the drug prescribed, trusting medical advice, adhering to instructions, thinking we were doing the right thing.  Side effects, a change of drug, more drugs, more side effects and eventually withdrawal, often after years or even decades of ill health.  Caught between a rock and a hard place, sick on the drugs, sick trying to come off them.  And abandoned by those who have prescribed them in the first place.  Labelled as being mentally ill or diagnosed with “Medically Unexplained Physical Symptoms” or other such diagnostic label designed to obscure, doctors are legally protected, patients are left distraught and with nowhere to turn.  The only course of action is to turn to the media in a desperate bid to be heard, risking barbs that we are “publicity seekers”.

 

This situation is of course nothing new.  The introduction of benzodiazepines in the 1960s saw millions of unsuspecting patients “hooked” on sleeping pills and tranquillisers, the “opiates of the masses”.  By the time the addictive properties were recognised it was too late.  A class action against the drug companies and the Department of Health, Westminster came to an abrupt halt because it was costing too much in legal aid.  Prescribing rates subsequently increased.  The Government prescribing guidelines of 1998 stipulated 2-4 weeks but these were largely ignored.  Patient safety was clearly no-one’s priority.  Decades of campaigning for justice by veterans such as Barry Haslam, former chairman of Oldham Tranx, resulted in local services being provided but no national strategy to adequately address the problem.  The internet and social media has enabled patients to find a voice, albeit one that continues to be ignored by those in positions of power.

 

Antidepressants entered the market with great fanfare and were said to be non-addictive by the companies producing them. The success of these drugs has been built upon the misleading marketing tactics of the pharmaceutical industry, particularly the notion that a “chemical Imbalance” in the brain causes depression.  Of course there is no scientific evidence to support this and never has been.  Clinical trial data were manipulated, the benefits exaggerated, the harms minimised.  Luke Montagu, future Earl of Sandwich and Dr James Davies, Oxford University established The Council for Evidence Based Psychiatry to highlight the real facts about mind-altering prescription drugs.  www.cepuk.org

 

Today, antidepressant prescribing is frequently in the news, particularly as it increases unabated, a trend that is defended by many doctors.  https://www.theguardian.com/society/2017/jun/29/nhs-prescribed-record-number-of-antidepressants-last-year  Yet there is now substantial evidence that these drugs perform little better than placebo pills for most patients with only 25-30% improving over three months, as cited by the Royal College of Psychiatrists.    http://www.rcpsych.ac.uk/healthadvice/treatmentswellbeing/antidepressants.aspx  This is hardly impressive.  It most certainly does not warrant the medicating of millions of patients when the risk of harm is very real.  http://www.bmj.com/content/357/bmj.j3129/rr-5

 

The issues of dependence are well-known among the small number of charities that offer help and support and the online communities of patients who are finding it extremely difficult to withdraw from these drugs.  The British Medical Association (BMA) has declared PDD as a public health issue which demands Government attention.  https://www.bma.org.uk/collective-voice/policy-and-research/public-and-population-health/prescribed-drugs-dependence-and-withdrawal 

This view is supported by the All Party Parliamentary Group on PDD.  https://prescribeddrug.org

 

All UK Departments of Health remain unwilling to fund a much needed helpline and specialist services to assist patients withdraw safely from prescription drugs of dependence.  Funding is instead focussed on helping patients give up drug and alcohol addiction.  Perhaps the focus on addiction helps to divert attention away from the issue of PDD and the responsibility of the drug companies and the medical profession in creating the situation we are now in.  The number of illegal drug addicts are estimated regularly, little attempt is made to do the same for PDD patients.  Instead their difficulties are concealed by misdiagnosis and further drugging or mislabeling as mentally ill.

 

A petition has been submitted to the Scottish Parliament requesting appropriate services for PDD patients.  The written evidence by patients makes for harrowing reading. Entire lives lost to PDD.  This is not the legacy of the past, it is also the future. Patients consigned to a lifetime on drugs that they do not need simply because they cannot tolerate the withdrawal symptoms.

 

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

 

James Moore’s petition for tapering kits now has over 2,000 signatures and his weekly podcast on issues of withdrawal is extremely popular, with 25,500 downloads in 16 weeks.  http://www.jfmoore.co.uk  Interview excerpts can be heard here. https://soundcloud.com/user-581729117/lets-talk-withdrawal-interview-excerpts

 

Claire Hanley is the first UK patient to use a tapering kit produced in The Netherlands by Dr Groot.  Dr Groot has done what no drug company has been prepared to do, give  patients an opportunity to taper slowly and safely.  Patients of course will have to pay for this privilege.  Many will be unable to afford it.  This is in contrast to the provision of free methadone for drug addicts to help them address their illegal drug addiction habits. 

 

And so we, the members of PHUK, ask:

 

Why are patients who have been harmed by prescription drugs denied appropriate help and support? Is it really a lack of funds or is it more likely that vested interests would prefer we were kept silent? 

 

When millions of patients are prescribed drugs of dependence by their doctors, drugs which can cause significant harm, the many thus harmed cannot keep silent.  The clamour will only grow louder as the gross injustice of this situation becomes common knowledge and prescribing of antidepressants continues to rise.

 

Surely the cost of a helpline and specialist services to enable patients to break free from damaging pharmaceutical products is better than maintaining those patients on these same drugs for the rest of their lives, causing ill-health and disability for many and subsequent reliance on disability benefits.

 

To do a proper cost-benefit analysis would take tremendous effort.  Not even basic data have been gathered by successive governments.  Perhaps this is deliberate.  Decades of inaction cannot just be attributed to incompetence. To set up a helpline would most certainly reveal the demand.  Perhaps that is why our Governments cannot risk it.

 

Signed on behalf of PHUK members

 

 

It's an excellent letter Fiona!  Thank you for persevering despite everything. 

 

I was very pleased to see the letters published in the BMJ as well.  Seems to me that was a great step forward.  The medical community must be questioning themselves to have published those, as you said.

Thanks, benzohno.  I do believe the medical profession is questioning itself.  I think we are confronting them with the truth about what they have done and continue to do.  It is good that they are willing to publish what we say.

 

Will let you know if this letter of  mine gets published at all.

 

Fiona 

 

 

Fiona,

 

Great letter. I've read your progress log and buddie blog for several years now. This BS from doctors and drug companies is disgusting and abhorrent.

 

I hope more people than just you are doing this. Well, I'm here in the US, and you know our problem is "not good" either.

 

And just one other thing. Those antidepressants and antipsychotics are also "addicting." Should I say "dependency causing" instead? Whatever. They have a discontinuation syndrome.

 

That's code for WITHDRAWL SYNDROME.

 

Why all this ridiculous "stuff" from the drug companies? MONEY $$$!!!

Thank you so much for taking an interest in my progress. you are very kind.

 

There are many people campaigning now in different ways both in the US and the UK.  The momentum is definitely building up.

 

I think we will achieve something at some point but we just have to keep going with this.

 

Here are some letters we have had published in the British Medical Journal - see the response from a doctor encouraging our efforts.  We are definitely tapping into a concern amongst some doctors maybe many doctors?

 

http://www.bmj.com/content/357/bmj.j3129/rapid-responses

 

Fiona  :thumbsup: