What caused the loss of half Margaret's sight?
Why did it take nearly 30 years before she was registered as partially sighted?
Why were the MDU involved?

SIN has been campaigning for two and a half years for patients to have control over their own medical notes. After each consultation patients should check the summary made by the doctor or nurse for accuracy, then the notes should be signed and dated by the patient &  health professional; a copy to the patient. In addition, a copy of all  tests results,  including X-rays and scans, should be given to the patient, a small charge may have to be made for these.  If anyone doubts the necessity for this, then reading Margaret's case should be sufficient to erase any such doubts.

Sunday, August 25th 1968 began like any other Sunday for Margaret, then 27 years old. She and her husband had decided to visit Margaret's in-laws, who had just moved into a new flat in Bournemouth. The whole family had spent an enjoyable day with their toddler daughter, and were especially happy because Margaret was fairly certain that she was pregnant with their longed for second baby. The tragedy, which was to change Margaret's life irrevocably, struck in the evening after their little girl had been safely tucked up in bed.

Without warning Margaret suffered a terrific headache, such as she had never experienced before. She did not lose  consciousness, nor did she experience any neurological symptoms or disturbances, but she did start to vomit. The family called in a GP who thought that she had suffered a very bad migraine , to which Margaret was prone. The next morning, Monday 26th August, the GP was recalled because Margaret was still suffering from a headache. She was admitted to the local hospital where a lumbar puncture showed that blood was present in her spinal fluid. A spontaneous sub-arachnoid hemorrhage was diagnosed.

Although Margaret was beginning to feel better, she was transferred to  the large Regional Hospital, where she was told that she must have an angiogram of the brain ( this involved using a special dye to x-ray the blood vessels). On Thursday, 29th August, the first angiogram was carried out to determine the site of the bleeding. Margaret felt extremely ill after this procedure, but her sight remained in tact. Her nursing record states that both  pupils had become dilated, then only the  right one, and finally   both had  returned to normal. Margaret was told that no aneurysm had been found.

To Margaret's surprise, since she had been told it was "all clear", the consultant had ordered another angiogram for the Saturday morning of 31st. August, even though this was  August Bank Holiday .This time everything was  different. When Margaret was wheeled down to the theatre she could see normally but when she regained consciousness, to her horror she had lost half her vision in both eyes (hemianopia) and had began to vomit profusely. She also had an intense pain in her head and neck. However, she and her husband were informed again that no aneurysm had been found in either angiogram. The nurse reassured Margaret that her sight would return very shortly.

Margaret discovered, decades later that, although the nurses were checking her regularly every hour for the next few days , not one single mention was made of her hemianopia. Further more the doctor recorded it once only , and that was on the day of the second angiogram, 31st. August. However, there was only one angiogram  recorded in the nursing notes, and that was the first one. What was even more astonishing was that the consultant had written in a note sent to the local Hospital, on 11th. September, that " the sight deficit was gradually clearing". This was blatantly untrue, but it was a  written admission that a sight defict had occurred! Unfortunately this false information was propagated to her own GP, who assumed that her sight had returned. To all intents and purposes she was officially recorded as still being fully sighted. Although Margaret complained to her GP, no doctor was ever willing to reassess her vision or the reason for the loss.

On 10th September, whilst still being sick and in a very distressed and bewildered state, Margaret was transferred to yet another hospital. Here, the cause of her vomiting was discovered - her pregnancy was confirmed. Happiness quickly turned to sorrow when she was told that she must have a termination because it was not safe to have a pregnancy in her condition. She was kept flat on her back for one month and then the termination was carried out.{Years latter, Margaret discovered that this loss of her baby had been referred to in her notes as " the removal of a product of conception"].

Margaret was not sent home because her sickness continued and she had various investigative procedures to diagnose the cause including a barium swallow and a cholecystogram. In October she was diagnosed with "hysterical vomiting" following the shock of the termination, and admitted to a psychiatric unit, in yet another hospital. Whilst in this unit she suffered two falls causing back injury because of her poor vision.  She was referred to a gynaecologist in late December, 1968 because she was getting so fat.  He made no diagnosis, however, a nurse suggested she could be  suffering from a phantom pregnancy. Eventually the real cause was discovered. It had nothing to do with "hysteria" - Margaret was still pregnant - she had been carrying twins, Margaret being a twin herself. She then had to go through the additional trauma of losing her second baby on 21st. January, 1969, being over six months pregnant . [ Years later Margaret discoverd that this second traumatic loss was described in her medical records as a "soft cystic swelling  26 weeks in size arising out of  pelvis" ]. Margaret had a caesaren operation i.e.  an hysterotemy. She never saw her baby girl.

It was not until April 1969 that Margaret was given a reason as to  why she had lost half her sight. According to one doctor the cause had been a spasm in one of  the "migrainous"(?) arteries , not caused by the angiogram. In October 1970 her husband decided to write to the consultant to ask more specific questions. What worried Margaret and her husband was that although she had suffered a great physical disability and excessive trauma with  the loss of half her sight and her twins, no one had tried to help her. No one from social services visited to see how she was adapting to being partially sighted. Margaret had been left  to readjust,  on her own,  to being half blind and all that  that would entail with a toddler to cope with and a home to look after. Another fact which bothered them was, why had Margaret lost half her sight when other patients with far worse sub-arachnoid hemorrhages had undergone angiograms without sight impairment. Unbeknown to Margaret, her husband's reasonable letter had prompted the consultant to get in touch with the Medical Defence Union ( MDU). Click here to read the letter which Margaret found in her medical records, many, many years later.

As with all patients, Margaret had trusted her doctors to tell her the truth and believed for nearly 30 years that the  "migrainous"(?) nature of her arteries were responsible for her loss of sight. Because of this she had had to adjust to a very different kind of life style. Her activities were severely curtailed, forcing her to lead a very quiet life; her vision had been permanently damaged and reading was slow and difficult with frequent headaches after visual activities. Her right hand was clumsy and her balance was affected which meant that over the years she suffered frequent bad falls and knocks. In addition, her career as a nurse was over and so was her economic independence, she was deprived of her earnings  and in due course what would have been her future pension. She received no help from the social services and the local hospital refused to advise her when she wanted to try for another baby.

The year 1972 brought happiness again to the family when, in June, Margaret had her second daughter.

Margaret had stoically come to terms with her infirmity until October 1994 when she visited an optician who was surprised that she was not registered partially sighted. He suggested that she be referred to an Ophthalmologist, who is the only person who can confirm the registration of the visually impaired. Following a referral from her GP, she was scanned for visual field and diagnosed with " dense complete hemianopia" and was registered partially sighted in January 1995. Margaret was informed that she should have been registered in 1969 . For years she had been deprived of her rightful benefits.

A few months after registration a doctor, by chance, who was unconnected with the above events, happened to mention that  two angiograms were not normal because of the inherent risks of the procedure. Margaret decided to investigate and tried to access her notes under the 1990 Access to Medical Health Records Act. She found some of her records were inaccurate and others were missing.

By May 1996 Margaret had managed to arrange a meeting at the Regional  Hospital with herself, her husband and a consultant neurologist,neuro-radiologist and others. In a follow up letter after the meeting, the Trust acknowledged that angiograms could cause "neurological deficit" eg. sight impairment, in four possible ways: (i) the cathether could dislodge a thrombus, (ii) the point of the catheter could produce emboli (iii) the catheter could provoke a spasm in the artery (iv) the dye could act as an irritant and induce a spasm.  However,  the Trust  refuted her allegation that the hemianopia  could possibly be related to  the second  1968 angiogram. [The logic of this escapes us]. Margaret consulted a solicitor in 1997.

An expert witness, a neuro-radiologist stated that her first angiogram was normal, but he accepted that the second angiogram had revealed blood clots ( emboli) which had caused a blockage ( infarction) which had cut off the blood supply to part of the optic nerve which interprets vision, thereby causing partial blindness. A colleague neurologist asserted that it was normal in 1968 to have two angiograms but agreed that with any angiogram there was a risk, all be it  small , of causing a loss of sight. In any event Margaret had never been informed of any risk and therefore had not given her informed consent for the angiograms. Margaret tried to obtain more information by writing to this doctor through her solicitor, but he refused to answer further questions, although she was paying for the consultancy. Is this not withholding medical expertise to the disadvantage of the patient? What possible ethical justification is there for this ? Together with the consultation and solicitor's fees, her husband paid out £5000.

Interestingly there is only one angiogram recorded in the GP's medical notes and this was recorded as taking place on Sunday 1st. September, a day on which no angiogram was taken. [What muddle & confusion!]

Points Raised by Margaret's Experience

1.Why was Margaret not informed of the potential risks of having an angiogram?

2. Why was only one angiogram recorded in the GP's notes - and that on the wrong day, the Sunday? Why did the nursing notes only refer to one angiogram, and that one being the first on 29th August?

3. Why was she told that her "migrainous" (?) blood vessels had caused  the loss of half her sight when it is now recognised that the second angiogram shows the presence of emboli ( blood clots) which cause loss of sight and would have been  produced  by the angiographic procedure? Why did her notes refer inaccurately to her as having a femoral arteriography ( entry of catheter via an artery in leg)? Margaret is adamant that the first angiogram's point of entry was via  an artery in her neck, causing extensive bruising, and the second was via an artery in her left arm.

4.Why did the nursing notes not record a single mention of Margaret's hemianopia either immediately she recovered from the second angiogram or in the weeks following? Margaret, having once been a nurse herself knows that this  omission would have been gross negligence. Would nurses have been so negligent,  or is it possible that the nursing notes were rewritten, and if so, on whose instructions?

5. Why did the doctor make only one mention of hemianopia, although Margaret was in the hospital for several weeks and  why did this doctor write, quite falsely, in  Margaret's medical records, ten days after the second  angiogram ," the sight deficit was returning" . If Margaret, as a patient, had been allowed to see her notes and to have copies of them, this inaccuracy would have been corrected immediately and her GP would not have been mislead into thinking that her sight had returned.

6.. It is not surprising, therefore,  that she was never registered as partially blind in 1969: she simply had no obvious medical record  to say  she had  suffered damage - only her word  - the patient's word -and that was simply not enough.

7..Margaret received no help to adjust to life as a partially sighted person, no counselling for the trauma of losing half her vision and going through the enforced termination of twins. It is hardly surprising that Margaret believes that she was abandoned and that this was a deliberate policy to isolate her from any health professional who might make an indiscreet comment that would have prompted her to question the medical care and information she had received. After all if it had  been Margaret's own  "migrainous(?)" blood vessels which had caused the loss of sight - what was  stopping the recording of her hemianopia and giving her the much needed  help? If the angiogram had caused the emboli,why was she not told?

8. The fact that the MDU were called in by her consultant is  significant. When an error and serious damage has occurred then doctors will know about it before the patient. Obviously this consultant was worried, and yet Margaret and her husband were only asking inocent questions, which they had a right to ask.

9. The fact that the MDU received Margaret's confidential medical records without her consent and without her knowledge is, in our opinion,  an outrage.  The MDU and the MPS ( Medical Protection Society) have been helping themselves to our medical records for years, and we do not believe  this is in the patient's interests. SIN believes that this disgraceful breach of our human rights, of our trust and confidentiality should be stopped immediately. Margaret's case proves it has been going on for thirty years at least. Why should a doctor need advice on telling the truth to a patient? Why was it necessary to send Margaret's records to the MDU? It must have been important to have warranted a personal interview in London. All iatrogenic patients have the same experience of critical documents going missing and other documents and test results having been changed. This surely does not happen by chance?

10.Margaret challenged the MDU on this matter recently, accusing them of  reducing her chances of obtaining the truth as to the cause of her impaired vision and hence benefits and compensation. The  representative replied coldly: " Madam, all this happened nearly thirty years ago", as though that made it irrelevant. Actually it makes it worse., for Margaret has been suffering an injustice for all those years, and this arrogant attitude of the Medical Insurance Companies seems to be present today. How many times have they thwarted patients from obtaining the truth about their medical condition and the exact cause of damage?

Margaret has been a great supporter of SIN and has given Margaret and Gillian  tremendous moral encouragement. Because of her experiences Margaret, as with other members, believes  that it is absoulutely essential for patients to have control over their medical records. Like other members of SIN, she has been sending letters ( typed by her husband) to as many people in authority as she can to describe her predicament and to expose the corruption of the system. Margaret, in particular, has been asking for the "Risk Management Report" which is written after every adverse incident. Although the name of this documentation may have changed since 1968, there is sure to have been something written down.

Margaret has written to Mr. Alan Langlands ( who hasn't?) former Chief Executive of the NHS, to Mr. Stephen Thornton , Chief Executive of the NHS Confederation of Managers; to her MP, to the Prime Minister, ( who hasn't?) the Office of the Secretary of State for Health ( who hasn't): :MS Yvette Cooper, the Under Secretary of State for Health,  the GMC and the Health Select Committee and various newspapers and media programmes. Letters have been acknowledged by most of these people, but none of Margaret's questions have been answered, and the serious issues she has raised have been avoided. Margaret always mentions  that she is a member of SIN. Here are a few paragraphs she has included in her letters:

"There can be no doubt in my mind that the consultant ......where I was a patient conspired to falsify my records immediately after I had been permanently physically damaged...the nurse failed to write that I had a complete dense hemianopia on returning to the ward after the angiogram at 12pm. I can only assume that she had been instructed not to include this in the nurse's observation records on me. An act which I  consider to be a criminal offence. It is clear to me that some of my original records were destroyed and / or rewritten.....

" I am half blind in both eyes caused by a second angiogram .....This caused me permanent physical damage. My medical records were falsified. I was then neglected, deprived of help, deceived and lied to and financially and mentally abused by some of the staff of the hospital....."

".....I should be grateful if you could now help me get all my medical records corrected....I want compensation for the permanent physical damage done to me......"

SIN believes that Margaret should be reimbursed with all the backdated disablility allowance  to which she  is entitled . Margaret has asked the DSS to investigate her case, but we understand that this  has been refused.

P.S.  At the AVMA Annual General Conference on Saturday, 23rd. September, 2000, during a Seminar on "Medical Records" the issue of confidentiality and the  matter of the MDU & MPS accessing Medical Records without the patient's knowledge or permission, was raised. The Chief Executive, Arnold Simanovitch, confirmed that the MDU & the MPS did in fact gain access to our medical records, because this was their "right". The Seminar participants indignantly asked where this so called "right"  was to be found. The Chief Executive, then conceded that this "right" had never been challenged or questioned. Well it is being challenged & questioned now! Why has AVMA never informed their members that the MDU & the MPS gain access to our medical records without our knowledge and permission?  Why has AVMA never challenged this?

P.P.S Margaret wishes to point out that those documents of her medical records which are accurate are those which are irrelevant to her case. Those Medical Records which are inaccurate, or which have been lost are , on the other hand,critical !! [ SIN knows that this is a common  experience to all iatrogenic patients]
 
 
 
 

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