Open letter to UK Health Departments

Prescribed Drug Dependence is a most urgent and pressing national issue

For decades, victims of prescribed drug dependence (PDD) have campaigned for appropriate services on the NHS.  Most notably, Barry Haslam, former Chair of Oldham Tranx, who continues the fight despite suffering brain damage from benzodiazepine withdrawal.  Appropriate services have been provided in Oldham and this should be replicated across the UK.  We, the members of Prescribed Harm UK (PHUK) have now joined Barry along with the many thousands of victims who populate the online PDD support groups.  In the absence of any meaningful help or support on the NHS, we have nowhere else to go.  UK Government ministers have pledged action on many occasions, yet no comprehensive approach has been adopted.

Instead, services have been provided for alcohol and drug addiction while PDD patients have been sidelined and ignored.  No assistance to safely taper from drugs of dependence, no  rehabilitation services.  Liquid forms of drugs such as valium are deemed too expensive to prescribe.   In recent years, tapering kits have been developed by Dr Groot in The Netherlands to enable PDD patients to taper slowly and safely.  This comes at a significant cost to those in need, unlike the free provision of methadone to those addicted to street drugs.   Regular attempts are made by Governments to estimate the number of such individuals despite the obvious difficulties involved.  Perhaps such efforts could be made on behalf of PDD patients and tapering kits or liquid preparations could be provided on the NHS.  I suspect this will be deemed too expensive.

Is it the case that UK Departments of Health prefer to focus on drug and alcohol addiction rather than shine the spotlight on the role of the drug companies and the medical profession in creating yet another national PDD scandal.  It certainly would seem that way.  The Benzodiazepine Medical Disaster was never properly addressed.   These drugs were launched onto the market in the 1960s.  When the ability to cause dependency became abundantly clear, prescribing rates simply increased!!!  Government prescribing guidelines, 1988, of 2-4 weeks were largely ignored.  A class action in the 1990s was rejected due to excessive legal aid costs for the UK Government.  It is estimated that one million patients are  still prescribed these drugs, many will be prescribed them for life, not because they need them but because they are chemically dependent.  Their long-term health will be adversely affected, premature death is highly likely.

Antidepressants entered the market with great fanfare and were said to be non-addictive by the companies producing them. The same was said about benzodiazepines.  The immense popularity of antidepressants 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.  Today, antidepressant prescribing is frequently in the news, particularly as it increases unabated.  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.  This is hardly impressive.  It most certainly does not warrant the medicating of millions of patients when side effects are numerous and the risks of harm are very real.

As the prescribing rates of antidepressants increase, so too does the number of claims for disability benefits for mental health reasons.  (Whitaker R, 2014, Anatomy of an Epidemic). Does this reflect a rise in mental illness or does it simply reflect the damaging effects of PDD? Members of PHUK have found that drug side effects / withdrawal symptoms are not generally welcome as a reason for disability claims.  More acceptable  reasons have to be given to be successful.  And so the adverse effects of these drugs are neither documented as such by doctors or in the benefit claims system.  No wonder we cannot quantify the damage being done.

In the absence of any tangible Government action, patients are forced to fight for action.  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.  Interview excerpts can be heard here.  A single YouTube video by Fiona French, recounting her withdrawal experience, has had over 3,000 views.  There are countless such videos online.

A petition has been submitted to the Scottish Parliament requesting appropriate services for PDD patients in Scotland.  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.  Some psychiatrists (Prof David Healy, Dr Peter Gordon, Prof John Read) have given their support and psychotherapist, Dr Terry Lynch.  Also Dr James Davies, Roehampton University, London and Prof Peter Gotzsche, Nordic Cochrane Centre.

The BMA has publicly announced that PDD is a public health issue and requires urgent acton in the form of a helpline and specialist services.  It is supported by the All Party Parliamentary Group on PDD, the RCGP, RCPsych and other relevant organisations.

So far no UK Government has been willing to commit to such services.  Yet millions of patients are prescribed drugs of dependence including benzodiazepines, antidepressants, antipsychotics and opioids.  It is estimated that in England 800,000 patients are taking antidepressants for no good clinical reason.  (Davies J, 2017, The Sedated Society).  So it would seem there is adequate resources for unnecessary prescribing at a time when doctors are hard-pressed to cope.  There is also sufficient resources to maintain patients on drugs of dependence for the rest of their lives because they cannot cope with withdrawal.   There is sufficient resources for repeat visits to GPs due to drug side effects and repeated referrals to secondary care for unnecessary investigations.

And so the victims of PDD remain hidden, denied appropriate help and support from the profession responsible for prescribing the drugs in the first place.  Many are severely disabled, some are bedridden.  We have lost years, even decades of our lives.  We have withdrawn or are trying to withdraw from a variety of psychiatric 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 labels 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”.

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.  No-one attempts to quantify such devastation to lives.

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.

PHUK members, on behalf of the prescribed harm community.

Fiona French, Aberdeen, Scotland.  42 years lost to benzodiazepines and antidepressants, 3.5 years in bed due to withdrawal, cognitively and physically disabled, 4 years off the drugs. Unlikely to recover fully.

Alyne Duthie, Aberdeenshire, Scotland. just over 30 years lost to antidepressants, harmed by both antidepressants and benzodiazepines, almost 4 years off the drugs and still unwell.

Gavin Duthie, Aberdeenshire, Scotland. entire life, 37 years, affected by exposure to antidepressants in the womb. Cognitively disabled and diagnosed with Asperger’s Syndrome.

Ann Kelly, Alexandria, Scotland.  harmed by antidepressants.

Janette E Robb, Helensburgh, Scotland.  Caregiver to family member who has lost 22 years to antidepressants, antipsychotics and misdiagnosis.

Joanna Dennison, Inverness, Scotland. prescribed antidepressant at age 17 for low confidence work anxiety. Every time I came off the drug, as advised by doctors, I would have typical SSRI withdrawal which was misdiagnosed as severe depression anxiety.  I realised it was the drugs at age 32 and took the advice of the psychiatrist to switch to an easier drug to withdraw from.  Severe reaction and now can’t even volunteer or work part time, no social life.  Chronic and severe disabling pain, dizziness, head pressure, suicidal depression every minute of the day for 2 years now no sign of improvement or getting back to any quality of life.  This is my life at 34 now where I could have been a contributing member of society.  Unacceptable for anyone to be in so much pain and distress for trusting their doctor.

Marion Brown, Helensburgh, Scotland. psychotherapist, Recovery and Renewal support group.

Pamela Wilson, Belfast, Northern Ireland. Age 59. Prescribed benzodiazepines for a neck injury.  After 27 years suffering the cumulative & toxic / “recognised” side-effects, my GP’s cold turkey withdrawal caused a massive & completely paralysing seizure. For 8.4 years since,  ongoing misdiagnosis & no medical help cause me to suffer the constant & horrendous consequences of an obvious & sinister ever-progressing deterioration,  with increasing loss of physical function, feeling & substance. To date, for 36 years the consequences of benzodiazepine mis-prescription, and many added unnecessary psychoactive medicines, caused me to lose family, friends, social activities and very promising career in the Law Courts, N.Ireland and any normal or acceptable way of life.

James Moore, Caldicot, Wales. 20 year career in the Civil Service ended due to antidepressant dependence and withdrawal.

Barry Haslam, Oldham, England. over 40 years lost to benzodiazepines, awarded Disability Living Allowance in 1996 for permanent brain damage.

Claire Hanley, Cambridgeshire, England.  Age 38. 16 years lost to benzodiazepines.  Unable to work during that time. Also caregiver since the age of four to a family member disabled by benzodiazepines.  Ex United Nations HQ intern and parliamentary assistant.

Pauline Dove, Lincolnshire, England. Age 53. Ex Teacher & Travel Professional. Ten years of repeat antidepressant prescribing due to the mis-interpretion of antidepressant withdrawal as recurrent mental illness & the implantation of a pacemaker for antidepressant / withdrawal induced cardiac rhythm disturbances and autonomic nervous system issues.

Rosalind Jones, Cornwall, England.  Retired teacher. 40 years of prescribed benzodiazepines for sleep. Antidepressants also prescribed in the early years but unable to tolerate. Suffered many symptoms throughout these decades until so severe I researched for myself and found the answers. Nearly five years of horrendous withdrawal symptoms which are still happening today but better off the drugs than on them.

Andrea Mackenzie, Cornwall, England.  36 years on prescribed diazepam.  No other medication ever taken.  11 years off and still coping with neurological damage.

Julia Sari, England. 13 years lost to antidepressants and benzodiazepines.  Unable to work during that time.  Off all drugs and still recovering.

Ryan Kershaw.  Lincoln, England.  Asperger’s Syndrome and OCD. Diazepam 18 months.  Forced off, cold turkey.  Three months later and suffering extreme withdrawal symptoms.  Anxiety the worst it has ever been.

Johanna Griffith. Cambridgeshire, England. Age 29. 13 years on benzodiazepines, antidepressants, antipsychotics, and sleeping tablets.  Mother, former mental health support worker, clinical psychology postgraduate student.  Have been tapering two years.  Withdrawal dictates my every waking moment, often unable to function and perform everyday tasks.

Tabitha Dow, Windsor, England. Age 32.  Antidepressant Venlafaxine less than a year. Attempted unsuccessfully to taper off.  Stopped due to severe withdrawal symptoms.  Unable to work for 22 months due to withdrawal symptoms.

Toni Harris, County Durham, England. Prescribed antidepressants for PMS anxiety. Immediate suicidal reaction. Tardive dystonia.  Forced cold turkey from antidepressants.  Side effects led to 19 months use of anxiety medications. 15 months off  work due to side effects. Drug free 5 months, suffering badly.

Liz Burrow, Devon, England.  Aged 50.  22 years lost due to antidepressants, antipsychotic and benzodiazepines due to unrecognised Vitamin B12 deficiency. 24 different psychiatric drugs, as symptoms (side effects of medicines) worsened. Cold turkey and rapid taper off 3 drugs at same time, caused akathisia in 1999, not recognised. No doctor recognised drugs were causing my problems. Serotonin syndrome reaction due to polydrugging of 5 drugs. Realised drugs were the issue, causing my mental and physical illnesses. Withdrew over a 3 year period from all drugs. 20 months off and still very impaired. Major Akathisia, extreme muscle tension, pain, extreme anxiety, cognitive damage.  Unable to work or drive.

Loretta Sanderws, England.  Prescribed lorazepam for general anxiety disorder. Psychiatrist said to take it as needed and not to worry about it being addictive.  Fellow patient said not to take it unless unable to cope.  Followed her advice and only take it when symptoms unbearable. 5 years protracted withdrawal from escatalopram.

Catherine Haigh. Chair, North east together, Regional Network for Mental Health Service Users and Carers, England

Sandra Brakespeare, Cornwall, England.  Son been in psychiatric system 27 years. Hospitalised approx 14 times, sectioned again 17.5 years ago and been in hospital since. Been given almost every psychiatric drug including antidepressants. Despite all interventions, he is delusional on a daily basis, far worse than many years ago. Current methods (drugs, drugs and more drugs) is not working. There is much need for a different approach.  No illness or disease is a DRUG DEFICIENCY.

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