• Mis-diagnosis
• Damage
• Character assassination
• Failure of NHS Complaints Precedure

"Around 1990 I became aware that I was suffering form intermittent memory loss , that is spells of amnesia . I reported the matter to my GP. He made a referral to a Consultant neurologist who conducted a series of tests and stated that there was nothing organically wrong  The worrying problem persisted and I was again referred back to this neurologist.  For the second time he declared there was nothing physically wrong and I was referred to a Psych iatrist.

The psychiatrist diagnosed that I was suffering from "depression" and prescribed psychotic drugs . Although I disagreed with this diagnosis because I did not feel depressed, I took the drugs for some months. I then realised that my symptoms were getting worse and that I was getting seizures whilst on the medication. The psychiatrist continued to  insistthat I had  a psychiatric problem.

I was not at all satisfied with this state of affairs and decided to  do some research myself in medical textbooks and  papers. I came across the condition " Transient Global Epilepsy" . It would appear that I displayed the symptoms of this condition, short periods of amnesia being one of the symptoms. I made a note of the name of the consultant who was a specialist  and authority on this condition and wrote to him.. He kindly replied and suggested that I ask  my GP  for  a referral.

.This consultant neurologist confirmed the diagnosis after conducting  a series of comprehensive tests. I was prescribed specific  medication  for this form of epilepsy which stabilised the condition.. Nearly ten years later, I still have regular consultations with this doctor.

I decided that it was a serious matter for a  patient to  be misdiagnosed with psychiatric condition  instead of a neurological illness and given   drug regime which was making the underlying organic condition worse.  What do you do if you think you have had substandard care ?- you make a complaint.  I complained to my local hospital through the notorious Complaints Procedure. As per usual the Trust mishandled the complaint and then refused to communicate with me further,  claiming I was a professional complainant.

In all probability Des was  labelled  a "vexatious complainant". Once a complainant has this tag, it means that the Trust can ignore further correspondence. Such a name is invariably  given to any complainant who  has raised very serious issues which are an embarrassment to the Trust, and will not go away. The Trust will be  fully aware that it is their statutory  duty to  address these issues , but prefers not to do so. SIN has been sent  contemptible documentation from a Regional Office  outlining  what should be done about vexatious complainants & defining  this category of patient. What we want to know is what is going  to be done about vexatious, obstructive, and  dishonest management of Trusts &  Regional Offices?

I wished to establish what exactly had gone wrong:

• had the neurologist been incompetent - had he recorded my symptoms accurately etc..?
• had the correct tests been ordered?
• had these tests been performed adequately?
• had the tests been  interpreted correctly?

The incompetent and sheer dishonesty  of the Trust astonished.me. I enlisted the help of the CHC, but that was very short lived. This organization wants as little to do with patients as possible. in my opinion They can be described as " Not the patient's watchdog, but the  hospitals' lap-dog". And as far as I'm concerned the letters "CHC" stands for "Couldn't Honestly Care" . When I turned up at an open meeting with the CHC, thinking I would be encouraged to air my grievances, I got the shock of my life. The  Complaints Officer asked if anyone wished to say anything. I put my hand up and the Officer retorted " We don't want to hear from you!!"

 SIN has received many very serious complaints about the CHC, and the conclusion one has to reach is that this organisation is something of a confidence trick played on the public for the last 20 years at considerable cost.: it is paid for by the NHS and is under the authority of the Regional Offices ie. the Department of Health . We suspect they are "spies"  who alert the Trusts and the Regional offices to serious problems - the aim is not to help the patient but to "cover-up"  any  damaging  issue, even if this leaves   seriously ill patients  not receiving desperately needed medical care. Certainly this would tie in with  the article on "50 known scandals per year being covered up by the D.o.H." see "Pandora's Box" in  Our Comments

Not to be defeated ,I decided to take my complaints about the Trust   to the "impartial" & "independent "  Health Ombudsman's office. That was another experience of incompetence and, in my opinion, dishonest practice. The Ombudsman report was incomplete and inaccurate.
[ Same old story]

Again, not to be defeated I complained about the Ombudsman's office to the Select Committee on Public Administration  . I got nowhere with that either! 

 Gill is another member of SIN who complained about the "workings"  of the Ombudsman's Office . She discovered that between 30 and 50 complaints are received per year against this Office. She received a letter from the then Chair stating that ; " it would not be in the public interests to investigate the "workings" of the Ombudsman's Office" Gill found this statement rather absurd,  and we believe so would most people. What could be more in the public interest than to  investigate the  Ombudsman's Office which is a quasi- judicial process , if it is accused of malfunctioning? If this is never undertaken , then there is no quality control being exerted on the NHS Complaints Procedure and the staff who run it. The result is that there is no protection for the patient.

During my communications with the Trust I discovered that my medical documents were inaccurate and there was basically a character assassination being perpetrated. I had been described as being an alcoholic - which was quite untrue. The Trust refused to make any corrections. Like everyone else I sought legal advice. I was told that I would need £50, 000 on the table and that I would have to be prepared to lose every penny. Since I was retired,  on health grounds by now, this was an  impossible course to  follow

[In addition to this nasty, false  statement,  - Des  has the iatrogenic dice further loaded against him  - he has on his medical records that he  has been under the care of a consultant psychiatrist. Although this was a serious clinical error, Des has been unable to have this matter addressed. Of course, it only takes one confidential telephone call to tell someone involved with a patient's complaint that the patient is a "nut case",  thereby  allowing  everyone from then on to ignore the complainant

Furthermore, unscrupulous doctors, intent on self-protection and in order to cover-up their own malpractice, can insert into a patient's computer records a psychiatric code - without the patient  being informed. Many iatrogenic, seriously damaged patients have  comments  stating that they require psychiatric help or they are suffering from a "munchhuasen type syndrome" ie. imaginary illness. This is  to discredit the patient. Once a doctor's signature is on the letter, it must be true!! Are there no depths to which certain doctors will sink? 

Eventually I had a stroke of luck. I came across a civil servant who was prepared to actually look objectively at the documentary evidence relating to my complaint. Agreeing with me,he concluded that :"some matters had been dealt with inadequately, superficially or not at all."  This civil servant was prepared to put this in writing and so armed with this truly impartial evidence I wrote once again to the Ombudsman's office. I had by this time enlisted the help of my MP. Eventually the Ombudsman wrote to him  admitting   that " there had been certain mistakes made".However, that was all I got, for he was not prepared to do anything more. Although this letter was sent around to the various people who had mis-handled my complaint, no one took a blind bit of notice what the civvil servant or the Ombudsman had written . I went back to my friend, the civil servant, but I think he had been  "ticked off"  because he had received instructions that he was to do nothing further on my case!

I became rapidly disillusioned with my MP and  I tried to pursue my  complaints  by  writing to various people I thought should be concerned about what I perceived as a very corrupt process. Writing is very difficult for me and I have to write in longhand. I can only do very little before I start to feel ill, so the whole procedure is very  laborious  and time-consuming .

In the end I  reported back to my friend ,the civil servant. By now he was nearing retirement and he  agreed to have one last effort to support me and to help me to get some kind of just resolution to my complaints. Before he left office he wrote a definitive summary of the issues he thought needed addressing - all in my favour!

There was a long delay of two months before I managed to obtain this written summary. . It was nothing like I had been lead to expect. I believe this summary was ambushed and changed by unknown civl servants, after he had retired  This is such a  serious  matter - tampering with summary reports - that I believe  the  Health  Select Committee   should investigate  - after all it is  related to  the NHS Complaints Procedure and how civil servants deal with  problems  that occur  in the System  and which are brought to their attention by members of the public. . This civil servant should be called to give evidence which would allow him to speak in public,  so  relieving  him of the contraints of the Official Secrets Act.

I realise that, on the scale of iatrogenic damage, I am at the lower end, because at least I am getting specialist care! After hearing all the  appalling cases at the Conference in September 1999, I went home feeling very humble. I often wonder what would have happened  to me if I had not had the intelligence and ability to read and research through medical texts and ultimately diagnosing myself. Certainly, if I had been maintained on those psychotic drugs I would have become very ill indeed. The other point is that with a diagnosis of "depression" I was allowed to drive a car. With the accurate diagnosis of "epilepsy", I was banned from driving. This indicates  how important  clinical diagnosis : a wrong diagnosis  could put the patient at risk and the innocent public in danger". 

Des is till campaigning for justice and honesty in the NHS Complaints Procedure. He still demands an apology, the correction of his medical records and a statement from the Trust  outlining the procedural changes which have been introduced so that "lessons can be learnt" . from his misfortune.

We are very sorry to report that Des' wife, Pam, collapsed and died one evening without warning, from a brain haemorrhage in January 2001. SIN believes it is disgraceful that the last ten years of their married life have been spoilt  by Des' involvement in  the dishonest  NHS procedures which ill patients are encouraged to use whenever a complaint arises. Not only did Pam & Des have to cope with Des' illness but also with his   frustration as he wrote,  countless  letters  to  many insensitive  people. SIN believes that all the employees at the Trust,  the civil servants  (with one honourable exception,) at the D.o.H and those at  the Ombudsman's Office - all  involved with Des' complaint - should hang their collective heads with shame at the unnecessary distress they have caused.Why all this obstruction, when Des' case was relatively minor? Certainly, this battle has not been good for Des' physical health. 

The  distress and trauma caused to so many iatrogenic patients who are seriously ill, as they struggle to make their cases known, is a shameful blot  on this  so called democratic and civilised country. Many have, what is left of their  lives, ruined unnecessarily. 

Debbie's story is told by her mother:

• MIS-DIAGNOSIS
• CORRECT DIAGNOSIS  -  REPEATEDLY  IGNORED
• WRONG DRUGS - LEADING TO PHYSICAL ILLNESS
• DISRUPTION OF FAMILY LIFE & TRAUMA FOR DEBBIE & HER FAMILY

"Legal action is shortly to be taken against me to have me displaced as my daughter's nearest relative, simply because I am unwilling to agree to her being detained once again, indefinitely, under Section 3, in a psychiatric ward.

For the past 14 years my adult daughter, who prior to her involvement with the mental health service, was a useful and respected member of society, in full-time employment, has been subjected to misdiagnosis, inappropriately prescribed drugs, sexual harassment, bullying from both staff and patients and theft of clothing and money which was taken out of her handbag while she was asleep. She has suffered two broken arms, a broken nose and a detached retina for which she has recently undergone three extremely painful operations. All of this is offered as inpatient "treatment" under the mental health service. Patinets have no rights. Parents are powerless to protect their vulnerable adult children.

In 1993, after 5 years of misdiagnosis and inappropriately prescribed drugs, my daughter was diagnosed privately as suffering from Asperger's Syndrome ( the more able form of autism).  Since that time, she has had three other independent diagnoses of Asperger's Syndrome but successive mental health teams have refused to acknowledged the diagnosis.

Due to 14 years of cocktails of neuroleptics, benzodiazepines and SSRIs my daughter has gradually become unrecognisable as the capable, relatively independent person her family and friends once knew. Three years ago, she was diagnosed as suffering from Tardive Dyskinesia by three independent professionals which successive mental health teams refuse to acknowledge and continue to prescribe these dangerous, addictive, life-threatening drugs. Psychiatrists dismiss TD flippantly as just one of the side effects of the drugs, wheras in fact this is a serious iatrogenic illness casued by psychiatric drugs.

While my daughter is prescribed these drugs she suffers severe side effects. When she tries to stop taking them, she suffers acute withdrawal symptoms. Again successive psychiatrists refuse to acknowledge withdrawal symptoms and misdiagnosis mental illness for which ever more drugs are prescribed.

This is the third time that legal action has been taken for my displacement. Twice before I have been advised, by a solicitor, to agree to my daughter's indefinite detention or risk being replaced as her nearest relative by a member of the mental health team, which for my daughter would have been a fate worse than death- like placing her under the "care" of a wicked stepmother.

My daughter is a prescribed drug addict. I have tried to get professional support to help her through withdrawal. None is available and her addiction is not acknowledged. She has lost all quality of life, her health and her reputation. She is currently being prescribed Risperidone which is known to increase the risk of Tardive Dyskinesia. In addition, for some unaccountable reason, the psychiatrist insists on treating her with an anticonvulsant, Lamotrigine. She is not epileptic. Both of these drugs are know to increase the risk of seizures and to adversely affect the eyes - just two of the many sid effects. My concerns to the mental health team continually fall on deaf ears.

I have spent yeas laboriously struggling through the various National Health Complaints Procedures, without success! Psychiatrists have immense power and are accountable to no one but each other. The legal system regards them as "experts" while in reality, they are inadequately qualified, ignorant, arrogant and complacent and are responsible for the destruction of thousands of families' lives.

How long will it be before destructive psychiatry is recognised for the vile, evil tortuous medicine it truly is?