22nd May 2006
Third World Care in the UK? No change at grass root level!!
• Another  case of BLACKLISTING*  - 'denial & cover-up' ?
• Many scans/tests etc.over the years but NO DIAGNOSIS
• Eventually referred to a Pain Clinic
• Collapsed in India - scans  & tests  = IMMEDIATE  DIAGNOSIS
• Excellent care + treatment in hospital
• Return UK in air-ambulance with Indian insurance doctor
• Promised bed  but not available in UK hospital on arrival
• Lack of care  and poor procedures at A & E 
• Sent home without money or keys to house
• Hospital claims appropriate care was given!!!!
• Pressure from hospital exerted on local Press NOT to print the story This is a disgraceful abuse of their power and thwarts democracy

David is 47 years old and has had back pain for over 20 years. This has been a great problem for him because he does a physically demanding work. as a plumber. The last 6 years had shown a severe deterioration and he has been in agony many times with his legs becoming numb and has repeatedly brought his problem to the attention of local hospitals specialists. Three years ago he was  referred to a Pain Clinic and has been given  three appointments during this time.

Background:
.In 1985 David had a Myodil Myelogram - this is a dye injected into the spine for the purposes of scanning the spinal cord for any disease. The dye used on David was oil based. It was understood by the late seventies that such dyes, especially the oil based ones, were dangerous and in fact were not licensed for use in spinal cords or the brain because they can cause swelling of the spinal cord resulting in excruciating pain and sometimes paralysis.  The dye probably should never have been used.This constitutes iatrogenic damage. The fact that David was working as a plumber meant that his condition and pain were aggravated. Doctors have never suggested he had time off from work. The name for this inflamation of the spinal cord condition is 'arachnoiditis'.  It is, therefore, very difficult to obtain a diagnosis of 'arachnoiditis' because approximately 90% of such swellings are iatrogenically caused. ( ie. caused by medical treatment). Presumably,  such cases are seen as being 'potential litigants'.

Recent Medical Care:
About 5 years ago when his pain was becoming excruciating he was referred to a neurosurgeon. He was given an MRI scan. He waited for two years to be referred to a Pain Clinic and in the end he paid  for a private referral  where he was given a powerful injection of steroids and cortisone which eased his pain considerably. He has never seen the results of the MRI scan. 

Eventually the effect of the injection wore off and he had others at the NHS, but these were much less effective and lasted only  a  short while.

Last September 2005 he was referred for an emergency scan, but has been unable to obtain the results. Such a scan is used to detect Arachnoiditis.

Holiday to India  January 2006 with his family:
Collapses whilst on holiday as his legs give way beneath him. Under his holiday insurance he is admitted to hospital  and given immediately  numerous tests and scans including blood tests, CTC scan etc. Given a thorough examination.

Very quickly, within one hour, a doctor sees him and  David  is given what has eluded him for many years in the UK - he is given a written  DIAGNOSIS (These can be scarcer than gold for the iatrogenic patient).

The Indian doctor tells him that he has a badly diseased spine: there are several large swellings of the spinal cord which could be a tumour but he is very certain that they are 'arachnoiditis'. When he hears that David  has received an oil-based Myodil dye injection he tells David he is deserving of an apology for all the years of suffering he has endured. In addition he has five prolapsed discs and an infection. David is so unused to receiving such a level of concern by the hospital staff  that he is quite overwhelmed and reduced to tears - he, a tough macho, muscular man!!

David receives excellent care. He is given appropriate pain killer injections, antibiotics and is put on traction. In all David  spent 27 days in hospital attended by solicitous doctors and nursing staff. "Why have you been allowed to suffer like this - all because of medical mis-management?"  he was asked. They told him he needed  urgent attention - they even suggested that they operate on him then and there. (We would all like an answer to this question  too - just why are iatrogenic patients  being denied diagnostic tests, the truth and specialist remedial care? Why are iatrogenic patients being allowed to suffer unnecessarily just because some health professional or the system got it wrong?)

The doctors wished him to remain for longer but the Insurance Company threatened to terminate the insurance  and more or less forced David  to return home ( UK). It was agreed to send David home in an 'air- ambulance' accompanied by an Indian  doctor paid for by the Insurance Company. A part of  a  routine plane was curtained off so that David could lie on a stretcher in privacy. He was flown back 7,000 miles to the UK. This was obviously very expensive and indicated that he was a seriously ill patient.  The Insurance company on medical advice had arranged for a bed to be waiting for him at a UK hospital near his home. This had been arranged by  Fax and Ward 23 was specified.  This was the same hospital  he had visited for the  Pain Clinic so  the doctors were very familiar with David's case - but had never given him the quality of care he had received in India....... But what was really awaiting him back  here in the  good old UK?

Prior to leaving, the Indian doctor went to the hospital to obtain the necessary scans which would be needed  for David's  treatment back  in the UK. Inexplicably, when David  reached Heathrow  Airport it was discovered that several important scans had been left behind in India including his  CT Report.
( Quel surprise?)

Except for the missing scans all seemed to go well. An ambulance was waiting  and drove David  several hundred miles back  to where the expected hospital bed was awaiting for him. David  was feeling so ill and dizzy that the taxi had to stop because he needed to be sick. David  was obviously considered to be a very ill patient, he had been bed-ridden for 27 days on traction and was feeling very weak. The Indian doctor did not accompany David  to the hospital - he returned to India.

The nightmare begins:
David  arrives at the UK  hospital feeling very ill. He  has been bed-ridden  for nearly one month and has been on traction under heavy pain relief. David  finds to his acute distress that NO HOSPITAL BED  is waiting for him in Ward 23. Worse still, the hospital is not prepared to admit him to ANY ward.

Instead he has to wait in the A & E Department for 3 hours until an 'appropriate' specialist can see him. This turns out to be the doctor on duty. This doctor decides, after hearing David's  symptoms and taking down the details, that the most appropriate treatment he can offer is a STANDARD X-RAY to check for any fractures!!!  This in spite of all the medical details of which David informed him. What utter nonsense  and what a comparison with the so -called Third World hospital treatment - doctors there seem better trained and more intelligent than their British counterparts. A standard X-ray was not on offer in India, for it was not  thought to be an  appropriate  diagnostic test. But is the fact that David is a potential litigant affecting the quality of his care?

David  naturally decided to protest, and the Registrar came to see him. The  Registrar even denied that a bed had been arranged for David, but David  was able to show him the Fax. Even faced with this evidence it made little difference to the Registrar  who said that they did not do spinal operations (!!) at that hospital and nor did they do traction. In fact there was no  neurosurgical unit there.  Why on earth was this not discussed when the Indian hospital was arranging the transfer? Why was he not admitted for the night for transfer to another specialist  hosptial the next day? Remember, he had been travelling for 7 hours and then a taxi journey of 2 hours and then a wait in A & E for 4 hours.

David  used this opportunity to ask about the results of the MRI Scan he had had the previous September for he had been unable to obtain the consultant's letter. The letter was found in his file and it confirmed that he did have  a serious spinal  problem and was to be referred back to a neurosurgeon at the Regional Hospital. Interestingly the report said NO arachnoiditis was present ! ( a -may -yon-naising !)   Why did David  have to wait  over 4 months  to see this letter.? More interesting still, why did it say NO arachnoiditis when the scans in India showed he had been suffering from this very serious condition for  many years?

Worse was to come. David  was told he must leave the hospital immediately. He explained he had just travelled 7000 miles from India on a stretcher , that he had not walked for over a month, that he felt very dizzy, that he had no money and, worse still, he did not even have his own door-key. ( He discovered he was minus his passport, too, which has still not been returned to him). His wife was  in India with his family for  they had been led to understand that Michael would be safely ( ?)  tucked up in bed on a ward in a British hospital. The Indian doctors had  told him he needed weeks of treatment and a serious operation.  David was given  a follow-up appointment  - at the Trauma & Fracture Clinic!!This sounds like some Carry on Doctor farce - the trouble is that it is true and very, very  worrying. Unfortunately, it is typical of the treatment given to seriously damaged iatrogenic patients.

What was David  to do?  He was told to go home by taxi. But where could he get the money from? He only had a few Rupees in his pocket. In the end he borrowed the money to telephone for a taxi from a kind hospital cleaner. He managed to contact a friend by 'phone and this friend agreed to pay for the taxi. The next problem was how to get into his home? A friend had to break in for him.  The hospital had offered to get him a locksmith, so they were perfectly aware of his predicament and the stress to which they were subjecting him

David's wife returned from India with his scans. When he went to the Pain Clinic in February, a few weeks later, he was able to show them to the specialist there. The specialist   said that the swellings on his spinal cord were obvious 'arachnoiditis' . ( A-may-on-ais -ing!) The Indian doctors thought that David  had had this condition for many years and it was getting worse and that it had been caused by the oil-based myodil injection.

Let us hope that at last David  will  get his referral to a neurosurgeon and that he will get sensible and correct care for his extremely painful and dangerous condition.

Footnote: David's story was printed in the local Press. However, pressure was put on the newspaper NOT to print the story. HOW DARE THEY ABUSE THEIR POWER?  This is happening all over the country. Local newspapers, local television stations ( BBC &  ITV etc) all covering -up  patient abuse. Were this a  sexual crime  it would be  all over the papers, but medical abuse is still taboo.

What did the  Clinical Director of A & E  of the Hospital say:

"  We would not promise to provide a bed before a full assessment of needs was made, and  that he did not need to be admitted". (This was contrary to David's understanding of the situation and the FAX had clearly stipulated a named Ward - doctors from India + Insurance company had made the arrangements and the 'medical assessment 'must surely have been a necessary part of the ordering of a bed for David?)).
 "In response to the outcome of  Mr. X's full assessment (an  A & E doctor - ignoring the assessment of higher grade Indian doctors - there was hardly a full assessment made by the A & E doctor, was there?) appropriate care was given" ( what ? - You must be joking  - sending him home in a very distressed state, feeling ill with no money and no door-key - Mr Clinical Director  if this is your idea of appropriate care perhaps you should be looking for another job?.) "and a follow-up appointment was made".( Big deal - at a fracture and trauma clinic!! - what about the letter in his file staying he should have an immediate referral to a neurosurgeon - 4 months ago?   Mr Clinical Director  - time you  arranged to see David and his family --- GET THE FACTS - and offer David a HUGE apology!).

Summary:
Is the whole sorry reason  for David's years and years of suffering  the fact that he is really an iatrogenic patient?  That he has been suffering from arachnoiditis caused by the oil based myodil dye which  should never have been used. If this is the truth then the British doctors concerned should be ashamed of their cruelty - because that is what it is. Perhaps one day these doctors, too, will suffer similar pain. If they do we hope they will remember David and all the other iatrogenic patients who have had to suffer in silence because diagnostic tests,  diagnoses and treatments are being withheld or falsified. We have always maintained that once a potential litigant, always a potential litigant.

The Indian doctors got it right: " You deserve an apology . Why have you been allowed to suffer just because of medical mis-management.?" 

We do know that there have been several  groups of arachnoiditis sufferers who have been agitating for compensation over the  years in class cases.  The Arachnoiditis Trust was a powerful group, but they have disbanded. Some, we believe, did obtain some compensation, but it was not excessive.

Could this really be what was stopping David from getting his diagnosis and medical care? What a sorry state British Medicine is in! When will we get the 'open and honest disclosure irrespective of legal liability '  SIN has been   demanding for 6 years.

In the meantime , perhaps we should all go to India for our health care?

Further Information about arachnoiditis:
A great deal of information is available on the internet. 
"Arachnoiditis  Explained" by  Dr. Sarah Smith to quote:
Arachnoiditis is a chronic inflammation of the arachnoid layer of the meninges, which are the coverings of the brain and spinal cord. The most severe form is Adhesive Arachnoiditis, which may be progressive".

" The scarring by the disease  causes many symptom, the most debilitating of which is pain, typically constant and of a burning nature, sometimes intemittent sharp, stabbing pains ....principally in the lower back and limbs ....found higher up the spine and radiate down the arms."" Myelography has come under fire as the cause of the disease. Myodil was banned in the seventies in America". 

" ....more controversial is .....the epidural steroid injection (using) Depo-Medrol which has been documented as neurotoxic..."

"Bearing in mind that arachnoiditis may be linked to a medical procedure, doctors may be reluctant to diagnose the disease".

Arachnoiditis .co.uk:
" The medical profession act as  if they are deeply sceptical of patients' claims to have ARC (Arachnoiditis ) because they are scared, on some level they must have known the truth and also therefore know that the truth is something they dare not face. Their spinal injections and surgical procedures are ruining lives and killing people on a daily basis. The majority of of original iatrogenic cases of ARC were generated by the regular use of contrast media, both oil nd water based because they are miscible with the CFS ( Cerebral Spinal Fluids) and therefore can be carried round the whole brain and Spinal Cord system".

"Epidural Steroid Injections & Epidural Anaesthesia: Surely young women should be made aware of the potential dangers of Epidural injections?
"....More and more women were reporting ARC as a result of epidural anaesthesia during labour. ........The drug most commonly reported to be at the root of these cases is Depo Medrol. The company which produces it marks  all their package inserts: " NOT FOR INTRATHECAL USE", that is, not for the spinal cord, but that is exactly where the doctors are using it. Though the drug is not licensed for such uses in the first placed, despite the warning on the package insert, they are injecting thousands of litres into human spinal columns daily. They rationalise this use, and what is worse, they are allowed to operate in this ad hoc way by government health departments around the world, simply because there was a body of thought that Depo Medrol is efficacious for lower back pain! [Good old Bolam raises its obnoxious head once again! Time Bolam was buried once and for all!]

" The simple truth is that it is not. There has been two studies performed very recently which conclude that Epidural Steroid Injections do not benefit patients long term.".... nothing  (NOTHING) can be injected into the epidural space of the human spinal column without consequences."

"Depo Medrol was never licensed for the uses doctors put it to, but doctors often use drugs off license. If there is a 'body of thought' within the profession that such use will be beneficial to the patient. This is nonsense because that 'body of thought' can be claimed even if just TWO doctors agree upon it and the government bodies responsible for medical care have not changed legislation to prevent this from happening. (BOLAM, BOLAM. BOLAM  - still being used in he UK courts - upheld by the MDU & the MPS who, we believe,  have sabotaged the recent Redress Bill).

"...patients were not informed  that the injection carried risks....every puncture of the spinal cord can have disastrous consequences... it opens up a hole in a system that sealed off to prevent blood from contaminating the Cerebro Spinal Fluid ... bacteria  being transported or drawn into the spinal cord causing  meningitis...." 

New Zealand Ministry of Health Report on Arachnoiditis - additional comments by Dr Charles V. Burton [ New Zealand seems light years ahead of the USA, UK and Europe in the field of recognising iatrogenic damage.]
" .....There are few disease processes more cruel and disabling than adhesive arachnoiditis which it is 'clinically significant'. The nature of the constant pain is such that it prevents normal activity, intellectual  pursuits and sleep.... of this incurable condition..."

"... It would have been nice to see that with the phasing out of oil-based myelography in the EARLY 1980s ( Again indicating that David should not have had the oil-based injection) that the issue of adhesive arachnoiditis would have become something of only historic interest...In New Zealand ... Depo Medrol is viewed as 'experimental' and thus carries a statutory requirement of specific informed consent by the patient , no such approach is taken by  such countries as the UK and the USA...... bearing in mind that these procedures are now the major  cause of new cases of adhesive arachnoiditis , use of epidural steroid injections should be discontinued forthwith. I am petitioning the UK Department of Health on this matter and intend to approach the National Institute of Clinical Excellence ( NICE) about it." Bravo, Dr Charles V. Burton!!!

Update on David

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10th June 2007 :

THE PRECIOUS INDIAN SCANS HAVE BEEN 'LOST' BY THE TRUSTS!

We had very much hoped that we could inform everyone that David, armed with the scans from India,clearly showing severe arachnoiditis, would have had his operation by now and be well on the way to recovery. Unfortunately, this did not happen. David, perhaps naively, handed his precious Indian scans over to the specialists at his Regional Trusts.

He had been under local consultants for several years and they had passed him from Trust to Trust and consultant to consultant - they had never diagnosed him with arachnoiditis. Surely, he thought now they have the evidence they will treat his condition? Remember the Indian specialists said he needed an urgent operation and would have been willing to give David the necessary operation in India but his Insurance Company insisted that he return to the UK?

David is feeling desperate. He can hardly walk and is using two crutches. The danger is that if the arachnoid swellings continue to grow they can put such pressure on the spinal cord that he could lose the use of his legs.

What has happened? Unbelievably, both Trusts ( ironic name) have lost his precious Indian scans! How can that have happened? David is certain that he has seen his scans in his medical records. No consultant neurologist or surgeon has yet acknowledged that he has arachnoiditis.

A further recent update is that David was seen by an Orthopeadic surgeon who operated for David's scoliosis ( twisted) spine and slipped discs - NB not a neuro-surgeon. This surgeon became very frustrated when even his tests and scans of David disappeared!. Eventually, David had an operation for the fusion of discs and two support rods in his spine.However, during the operation his spinal cord was 'nicked'. David went in for a second exploratory operation and it was found that David was leaking CSF fluid ( Cerebral Spiinal Fluid).This is very dangerous. The Orthopeadic surgeon thought that a neurosurgeon should operate.

David was left for 10 days and the leaking spinal fluid caused a large swelling to form on his back. He was also given antibiotics because he was in danger of getting Meningitis. Eventually the Neurosurgeon was pursuaded to operate and David's Dura were sealed.

We hope that the leaking fluid will have reduced the pressure on his spine and that David will now make a good recovery.

ARE DAVID'S YEARS OF POOR TREATMENT BECAUSE HE IS AN IATROGENIC PATIENT EVEN THOUGH THE TRUSTS(!!) HAVE HIS SCANS AND ALL THE EVIDENCE? WHO IS WILLING TO DEFEND SUCH CRUELTY?

THE SOONER FULL & HONEST DISCLOSURE REGARDLESS OF LEGAL LIABILITY IS INTRODUCED THE BETTER!

 

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