email to Una O’Brien, Permanent Secretary, DH and Jane Ellison, Public Health Minister

Dear Jane Ellison and Una O’Brien,

Regarding the reply of 10 September 2014 below from Jane Spencer on your behalf:

Doctors have ignored guidelines, including the Chief Medical Officer’s update to which the response refers. Reiterating guidelines has not worked. Furthermore, the Chief Medical Officer’s update was unclear which Professor Ashton complained about at the time.

Prescriptions of benzodiazepines and z drugs have remained between 16 million and 17.4 million between 1991 and 2013 with only a slight reduction in numbers of tablets per prescription.

More is needed to address doctors not complying with the CSM 1988 2 – 4 week tranquilliser prescribing guidelines.

Secondly, many doctors have not warned patients about the addictive nature and side effects of benzodiazepines and z drugs with patients left on these drugs for years and for some, decades, feeding an addiction caused by the health and care system. In Jane Spencer’s previous response she uses aspirational language such as “should” which bears no relevance to reality.

Patients who have contacted APPGITA and the withdrawal charities report that they were not warned about side effects and withdrawal symptoms.

At the end of this email I have provided a list of symptoms from a withdrawal support website reported by those withdrawing from benzodiazepines and z drugs. Tranquilliser withdrawal can be one of the most difficult predicaments a human being will face and requires specialist support. Specialist support and advice is currently not available apart from a handful of charities struggling for funding, such as CITA, which provides a national help-line which will stop next year due to lack of funding.

I and my colleagues and patients who contact us have experienced most of the withdrawal symptoms listed below and therefore Jane Spencer is correct in saying how disappointing her response is.  I must also say it is completely inadequate and represents a dereliction of duty by the Department of Health.

These are Department of Health issued drugs causing the addiction and not obtained illicitly and therefore a DH responsibility.

The final paragraph in Jane Spencer’s response contains more aspirations removed from reality such as the local CCG “may also issue advice to GPs about the length of time for which prescriptions should be issued”. I think we have more than established that the cause of this public health scandal has been caused by doctors ignoring guidelines regarding the length of time prescriptions should be issued.

How many doctors have been disciplined to date for poor tranquilliser prescribing?

Who is the professional regulator referred to?

Lastly, in my email of the 10 September 2014 and my email of 24 September I asked:

“What action will be taken to address those patients who have already been misdiagnosed with Alzheimer’s who in fact are suffering from the effects of long-term benzodiazepine use?”

I am still waiting for an answer to this question.

As Jane Spencer says, her response does clarify the Department’s position – no responsibility and no accountability.

I did advise Jane Spencer in my last correspondence that she obviously had no understanding of the issue or its consequences for damaged patients. I suggested that before replying that she research the subject on www.appgita.com and www.benzo.org.uk

It is apparent that she failed to follow my advice.

I have attached an email from Ingrid Wall for your reply directly to her requesting help for benzodiazepine side effects and withdrawal symptoms.

Yours sincerely,

John Perrott

 

Your response by email of 10 October 2014

 

Our ref: DE00000888613 

Dear Mr Perrott, 


Thank you for your further correspondence of 25 September about the long-term effects of benzodiazepine usage.  You also recently wrote to Una O’ Brien and Jane Ellison on this matter and I have been asked to reply on their behalf.

I note your continuing concerns about the safety of benzodiazepines.

As you know, the former Chief Medical Officer reinforced the Committee on Safety of Medicines bulletin of 1988 to prescribing doctors about the problems associated with benzodiazepines.

See the link below:

http://webarchive.nationalarchives.gov.uk/20130107105354/http://dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4070176.pdf

However, as you are aware, responsibility for prescribing rests with the doctor or prescriber who has clinical responsibility for that particular aspect of a patient’s care.  Good communication between practitioners and patients is essential and prescribers should always involve patients in decisions about the treatment proposed, including informing them of any possible side effects from their prescribed medicines. 

It is the responsibility of the local clinical commissioning group (CCG) to ensure that adequate controls of prescribing are in place and it may also issue advice to GPs about the length of time for which prescriptions should be issued.  Conspicuous poor prescribing would result in disciplinary action either from the local CCG or from the professional regulator.  For GPs, this would be the General Medical Council.  The use of clinical audit and peer review also provides a powerful incentive for local clinicians to study their patterns of care and improve prescribing standards.

I appreciate that this reply may be a disappointing one, but I hope it clarifies the Department’s position.

Yours sincerely, 

 Jane Spencer
Ministerial Correspondence and Public Enquiries
Department of Health

 

 

Benzodiazepine and z drug side effects and withdrawal symptoms reported by patients 

Mood

Aggression, Anger, Agoraphobia, Agitation, Akathisia, Anxiety, Apathy, Anhedonia (inability to experience pleasure), Crying and feeling weepy, Deep depression, Despair, Dysphoria, Extreme dispassion, Fear, Fear of dying, Fear of losing control and going insane, Fearing symptoms are not withdrawal, Fearing that you will never get better, Fear of life, Fear that symptoms are permanent, Feeling emotional, Feeling frightened,Feeling hopeless, Feeling like jumping out of skin, Feeling that the world is about to cave in on you, Frustration, Gloom and doom, Inability to appreciate humour and laugh, Inability to feel emotions, Inability to feel joy, Inability to feel pleasure, Internal feeling of anxiety with no corresponding external cause, Irrational fears, Irrational rage, Irritability, Loneliness, Low mood, Nervousness, No feelings of fun or laughter, Obsessive thoughts, Overwhelmed feeling, Rapid mood fluctuations, Sensitive feelings, Severe negative looping thoughts, Sudden sadness, Terror,  of normal emotions

Psychological

Difficulty in distracting oneself, Feeling disconnected, Feeling drugged, Feeling like a zombie, Feeling like being on a bad LSD acid trip, Feeling numb, Feeling scared, Feeling that you’re just going crazy, Feeling traumatised, Feeling unreal, Getting worried over small things, Hallucinations, Horrid visions, Hypomania, Images and songs keep repeating in mind, Inability to relax or sit still, Intrusive thoughts, Jumpiness, Loss of sense of identity, Misperceptions, Morbid thoughts, Morning madness, Not knowing who you are, Obsessive and compulsive thinking (OCD), Overwhelming feeling that you are going to die, Pacing, Panic attacks, Paranoia, Racing thoughts, Reduced stress tolerance, Suicide attempts, Suicidal thoughts, Thinking you are mentally ill, Unwarranted feelings of guilt, Visual hallucinations, Vivid dreams, Weird thinking, Wired feeling, Auditory hallucinations, Catatonic episodes, Compulsive suicidal ideation, Confusion, Delusional thinking, Disorientation, Formication (sensation that I had fleas/spiders crawling over me)

Sound and vision

Bloodshot eyes, Blurry vision, Dark-dim vision upon exertion or sunlight, Difficulty seeing, Drooped eyelids, Dry eyes, Eye twitching, Flashes of light in the eyes, Fuzzy eyes, Glassy eyes, Impaired vision, Occasional right eye pain, Pressure in the inner ear and outer ear, Red burning eyes, Sore eyes, Swollen eyes, Tearing eyes, Uncontrolled eye movement, Visual distortions preceding a migraine, Eye fluttering and twitching, Eye pain, Pain in eyes

Behavioural

Constant need to be occupied, Avoiding friends and people, Inability to occupy oneself

Cardiovascular

Chest pains, Fast heartbeat, Heart palpitations, Heart pounding, Low blood pressure, Premature ventricular contractions (irregular heartbeats), Pulsating all over my body(also visible), Pulse thudding, Racing heart, Severe pain chest, Skipping heart beats, Tightness in chest

Perceptual

Derealisation, Depersonalisation, Distortion of body image, Feeling like legs and arms are not attached to body

Cognitive

Can’t do tasks like make food, Difficulty reading, Difficulty thinking, Forgetting names of family members, Hard time with words, Impaired cognitive skills, Impaired communication skills, Inability to focus, Inability to function, Inability to learn, Jumbled thoughts, Lack of concentration, Memory and comprehension problems, Poor judgement, Poor memory, Short-term memory problems, Slow thinking processes, Spaciness

Muscular

All muscles moving, All muscle tone feels flacid, Body feels twisted, Cranial tightness (felt my head was decompressing), Difficulty walking due to weakness and shaking, Face spasms, Inner tension, Inner vibrations, Jaw clenching (can’t open or close mouth properly due to the spasms and pain), Jaw Spasms, Legs and arms shake, Muscle twitching, Muscle spasms, Rigidness and jerks, Muscle aches, Muscle cramping, Muscle tension, Muscle wasting, Muscle weakness (especially in the legs, arms and hands), Jelly legs, Restless legs, Stiff arms and legs, Stiff muscles, Stiffness in back, Teeth chattering, Tension in neck, Tight achy muscles, Tight jaw and temple, Tight head, Tight muscles in left leg, Tight muscles in neck and shoulders, Trembling and shaking, Tremors, Weakness, “jelly legs”, Skeletal aches, Joint pain

Nerves

All nerves firing off, Ankles reflexes diminished

Skeletal aches
Urinary

Difficulty urinating, frequent urination

Gastrointestinal

Bloating, Constipation, Choking, Diarrhea, Dry heaving, Fast and fine vibrations of the stomach, Gas, Knot in stomach, Loss of appetite and weight loss, Malabsorption, Nausea and vomiting, Severe pain in stomach, Slow heart rate, Swelling-bloating, Tachycardia, Weight gain

Mouth

Acid reflux, Dental pain (tooth pain), Dry mouth, Sore tongue, Metallic taste, Sore gums, Sore mouth, Too much saliva

Pain

Abdominal pain, Aching pain in legs, Bladder ache, Body aches, Headaches, Jaw pain, Lower back pain, Muscle and joint pain, Nail Pain, Neck pain, Nerve pain (hitting non-specific areas of the body randomly, but for short bursts), Pain in hands and feet, Pain in previous surgical sites, Severe bone pain, Severe head pain, Sore tongue and throat, Stinging pain, Teeth pain (felt like I had braces on), Throbbing pains, Throbbing legs, Waves of pain

Respiratory

Breathlessness, Chest discomfort and tightness, Difficulty breathing, Hyperventilation (overbreathing), Shallow breathing

Sensitivity

Chemical sensitivity, Cold extremities, Creepy crawlies on hands and arms, Feel cold even in hot weather, Food sensitivity, Intolerance to cold and heat, Intolerance to music, Photosensitivity, Sensitive to music, Sensitive to loud noises, Sensitive to light and stress, Sensitivity to smells, Very cold especially hands and feet

Sensory

Brain nerve pain, Burning feet and legs, Buzzing throughout body, Chills, “Electric shock” sensations, Electric static shooting around body,Food doesn’t have much taste, Head sensations, Heavy sensation in forehead and eyes, Heightened sense of smell, Hypersensitivity to light, Hypersensitivity to odours, Hypersensitivity to sound, Hypersensitivity to stimuli, Intense burning head/brain, Intense burning scalp, Intense burning spine, Itchy head and face, Numbness and tingling in face, Numbness and tingling in feet, Numbness and tingling in hands, Numb area on bottom of left foot, Numbness in arms, Numbness in face and left side, Numbness in fingers, Numbness in head, Numb right foot, Numbness in lip and tongue, Pins and needles, Sensory disruption, Soapy taste in mouth, Stabbing pains in limbs, Tingling on scalp, Tinnitus

Skin

Burning patches, Chapped skin, Cold sweats, Dermatographism, Dry itchy skin, Eyebrow loss, Feeling hot, Hair loss, Hives, Itching and stinging from head to toe, Itching sensation under my skin, Lashes falling out, Night sweats, Rashes, Rash under brows, Skin sensitivity, Sweating, Tingling skin, Very oily skin and hair

Sleep

Anxiety dreams, Frequent awakenings during the night, Horrific nightmares, Hypnagogic hallucinations, Jolts that wake you up, Lack of deep sleep, Poor sleep, Rebound REM sleep, Severe insomnia and tiredness, Sleep paralysis, Twilight sleep, Waking early, Weird dreams

CNS

Adrenaline jolts, Brain fog, Dizzy, Frozen feeling (like I need to get up and do something but can’t do the action), Hypervigilance about symptoms, Impaired vigilance, Increased nicotine craving, Lack of energy, Lack of motivation, Light-headedness (especially when I stand too quickly), Loss of balance, Loss of sex drive, Mental and physical exhaustion, Migraine headaches, Pounding in my head, Pressure in head, Pulsating in right temporal area especially upon exertion, Restlessness, Room spinning, Seizures, Severe fatigue, Thirst, Vertigo, Voice weak

Immune

Fevers, New allergies, Ulcers in mouth, Worsening of allergies

Female

Irregular Menstrual Cycle

Body

Feeling as if been punched in gut and chest, Feeling heavy legged, Feeling unwell, Flu like symptoms, General malaise, Going from hot and sweaty to cold and clammy, Hot and cold flushing, Increased number and severity of infections, Severe body pain, Water Retention

 

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Pulse – CQC to publish GP practices’ benzodiazepine prescribing data

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email to Professor Steve Field, Chief Inspector, Care Quality Commission

Dear Professor Field,

I am writing to tell you that supporters of the All Party Parliamentary Group on Involuntary Tranquilliser Addiction welcome the news published in Pulse Today that the Care Quality Commission intends to publish individual practices’ data on GP prescribing of benzodiazepines.

You recently met with the late Jim Dobbin MP and my constituency MP, Eric Ollerenshaw, to discuss the issue of tranquilliser prescribing and withdrawal and we are pleased with the progress that has been made from this meeting.

Additionally, safeguards need to be in place to protect patients against abrupt withdrawal. Safe withdrawal schedules and tapering methods are detailed in the Ashton manual, the BNF withdrawal guidelines and NHS Clinical Knowledge Summaries on benzodiazepines.

We hope that the CQC will introduce data on withdrawal protocols used by GPs as further criteria for inspections.

Lastly, I wondered if you would clarify whether z drugs will be included in this data collection as they have the same problems with addiction as benzodiazepines?

Best wishes,

John Perrott (APPGITA Co-ordinator)

 

Pulse – “CQC to publish practices’ antibiotic and benzodiazepine prescribing data”

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email to Jane Ellison, Public Health Minister

Dear Jane Ellison,

I have the following comments to make on the response I received (below) from your official on your behalf.

The health and care system introduced by the coalition government responds to demand and not to need.

There is no demand for treatment for involuntary tranquilliser addiction because patients do not understand their predicament and remain locked into acquiring their next prescriptions to feed the addiction caused by the health and care system.

Doctors do not have the time or resources to help patients withdraw and therefore keep providing prescriptions or worse still, initiate rapid tapers causing prolonged and painful withdrawal symptoms.

Local authorities are not treating involuntary tranquilliser addicts, including your own constituency in Wandsworth, as proved by my survey.

As benzodiazepine expert Professor Malcolm Lader said 23 years ago in 1991 “these people will go to their graves with their tranquilliser bottles beside them”.

Localism means the Department of Health has no accountability or responsibility and proved the perfect system to bury the benzo issue with.

It is obvious that the Department of Health deliberately stalled the policy review on addiction to medicine in the full knowledge that it could cynically divest itself of the problem in April 2013. The Department through the health and care system created this problem over 50 years ago and has now abandoned over a million patients to the misery of addiction.

Yours sincerely,

John Perrott

 

Our ref: DE00000888218

Dear Mr Perrott,
Thank you for your further correspondence of 22 September about tranquiliser addiction.  I have been asked to reply.

I note your continuing concerns about this matter.  However, as you know, since 1 April 2013, local authorities have been responsible for the commissioning of local services relating to public health.  They have been given a ring-fenced grant by the Department of Health, which for 2014/15 is £2.79billion, to enable them to do so.  This grant covers both services mandated through regulation and all other services that they may wish to commission in their area.  The Department believes that local authorities are best placed to decide on local priorities in commissioning services that meet the needs of their populations, including what proportion of spending should be devoted to different services, and that it would not be appropriate for ministers to intervene directly in such decisions.

All local authorities have a complaints procedure, which is available from them on request, that may be used where an individual wishes to raise his or her concerns about such decisions in their area.

Whilst I realise this reply may be disappointing, I hope that it is nonetheless helpful in setting out the Department’s position.

Yours sincerely,

Jonathan Collings
Ministerial Correspondence and Public Enquiries
Department of Health

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Response from DH on behalf of Jane Ellison, Public Health Minister

Our ref: DE00000888218                                                                     1 October 2014

Dear Mr Perrott,
Thank you for your further correspondence of 22 September about tranquiliser addiction.  I have been asked to reply.

I note your continuing concerns about this matter.  However, as you know, since 1 April 2013, local authorities have been responsible for the commissioning of local services relating to public health.  They have been given a ring-fenced grant by the Department of Health, which for 2014/15 is £2.79billion, to enable them to do so.  This grant covers both services mandated through regulation and all other services that they may wish to commission in their area.  The Department believes that local authorities are best placed to decide on local priorities in commissioning services that meet the needs of their populations, including what proportion of spending should be devoted to different services, and that it would not be appropriate for ministers to intervene directly in such decisions.

All local authorities have a complaints procedure, which is available from them on request, that may be used where an individual wishes to raise his or her concerns about such decisions in their area.

Whilst I realise this reply may be disappointing, I hope that it is nonetheless helpful in setting out the Department’s position.

Yours sincerely,

Jonathan Collings
Ministerial Correspondence and Public Enquiries
Department of Health

 

Dear Jane Ellison,

In your letter (attached) to the late Jim Dobbin MP of 10 July 2014 you said that:

“We expect local authorities to commission local services that meet the needs of those people who are addicted to medicines, such as benzodiazepines.”

My survey (attached) proves that this not happening.

Would you please tell me on the basis of this evidence what action you will now be taking to help the estimated 1 – 1.5 million patients addicted through no fault of their own to tranquillisers prescribed by their doctors?

Yours sincerely,

John Perrott

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email to Jane Ellison, Public Health Minister, 22 September 2014

Dear Jane Ellison,

In your letter (attached) to the late Jim Dobbin MP of 10 July 2014 you said that:

“We expect local authorities to commission local services that meet the needs of those people who are addicted to medicines, such as benzodiazepines.”

My survey (attached) proves that this not happening.

Would you please tell me on the basis of this evidence what action you will now be taking to help the estimated 1 – 1.5 million patients addicted through no fault of their own to tranquillisers prescribed by their doctors?

Yours sincerely,

John Perrott

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Survey of 152 Local Authorities in England recording numbers treated since April 2013 for Involuntary Tranquilliser Addiction

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Jim Dobbin MP Obituary, The Guardian, 10 September 2014

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The Boston Globe – “When withdrawal is the hardest part” The dangers of long-term benzodiazepine use

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Deirdre Boyd – Tribute to Jim Dobbin MP

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