In 1989 John’s pain began at the base of his spine and spread through his buttocks, down his legs and involved his genitals. The pain became constant and intense and caused great distress. No help was given for two years except pain killers which offered no relief. 1991 asked for referral to UROLOGIST but had to make a private appointment. Saw three consultant urologists, each only once, but no appropriate tests were carried out. An ORTHOPEADIC SURGEON thought that the base of his spine was "unstable". Asked to see a neurologist, this was refused. The GP insisted that John should see a PSYCHIATRIST to " Get rid of this anxiety". Saw several psychiatrists because John was desperate for help with coping with the pain which was diagnosed as psychosomatic. Over three years he was given 10 ECTs and 18 varieties of psychotic drugs. John became a nervous wreck and tried to commit suicide 7 times just to get relief from the constant and agonising pain.

John eventually became ill with another pain which was diagnosed as oesophageal and stomach cancer. John was actually relieved to get this diagnosis! But still the other agonising pain persisted. Even when John lay dying in a hospice from stomach cancer he indicated to his wife, Lilian, that the pain was still there.

The findings at post-mortem were: "The pain had been caused by severely blocked iliac arteries and he was diagnosed posthumously by a Urological expert as having had "Lerich’s Syndrome". A quote from a paper on Lerich’s syndrome reads:

"Severe ischaemia causes an agony of suffering, despite the most powerful opiates and analgesics. The patient is haggard, unslept and can think of little else"

These symptoms described John’s condition perfectly. This syndrome, when diagnosed, can be alleviated surgically and with appropriate drugs. Lilian tried to sue for negligent treatment of her husband for all the six long years of pain he had suffered. She had difficulties finding an expert witness because "so many doctors were involved". Lilian was given assisted  legal aid but had to drop the case because of the cost and her own poor health. Lilian is 70 yrs.old.

SIN’s comment: Lilian would have liked to have received an apology for all the years of suffering she and her husband endured. She also wanted to know why it took so long for this rare, but well known condition, to be diagnosed in spite of John having  all the obvious symptoms. She wanted to ensure  that no one else wouId have to suffer as her husband had suffered.

Lilian has written a poem dedicated to her John entitled "Suffering" here follows extracts:

Case Number 3:



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THE CASE HISTORY OF JEAN 1990
- 2000 (on-going problem)






In October 1988 I asked a GP if I
could be referred to a Consultant as I was in great pain. He refused. It
was only in Jan. 1989, when I offered to pay, that I was referred. I saw
the Consultant in Feb.1989 and placed on his Private Patients’ Waiting
List. A complete hip replacement was carried out in May 1989 at a cost
of several  thousand pounds. As I do not have private health insurance
he subsequently saw me in his NHS Clinic.

On 6th Oct. 1990 my hip dislocated and I was admitted to
Truro City Hospital. I was told I would
be under the care of the Consultant who had performed the operation. During
the day he visited another patient on the Ward but did not see me. The
following day I was transferred to another ward where he did not have patients.

In July 1992 I suffered a second dislocation
and was admitted to Treliske Hospital Truro. A new system was in operation
whereby the Consultant Orthopaedic Surgeon took it in turns to care for
patients on that ward. Two of them did speak to me, but neither examined
me or saw me on my feet. Two admissions without Consultant care.
On discharge I was given an appointment to see yet another Consultant.
He commented that they did not do anything about dislocations unless there
was a significant problem. The friend with me asked him to define what
he meant by that. He became very angry, left the room, and the nurse
told me I had been discharged!!

I wrote a letter of complaint to the
Chief Executive of the Trust, but Stage 1 of the Complaints Procedure was
not carried out. On 11th Nov. 1992 I had a meeting with The
Secretary of the Cornwall Community Health Council who afterwards sent
me a copy of his letter to the Chief Executive of the Trust in which he
stated he did not wish his Council to be involved in a case as complex
as mine. 

I next asked to see a South Western
Regional Health Authority representative under Stage 2 of the Complaints
procedure. He asked if I would agree to see a Consultant outside the region
if my GP agreed to arrange this. I was sent an appointment at Whittington
Hospital which was subsequently changed to a Private Clinic in Wimpole
street. In the meantime the Consultant asked me to get new X-rays taken
of my hip at the local hospital. This was done and I offered to take the
X-rays with me to the appointment, but the Radiology Dept. promsied me
that they would send the X-rays in time for my appointment. It was quite
a struggle to travel up to London. However, the X-rays were not sent. In
the Consultant’s report to the GP he says that in the absence of the X-rays
he could not make a diagnosis!

I have written several letter to the
NHS Executive in Leeds, but received stonewalling letters in reply. In
one letter I was told that "the consultants were wary of me", what ever
that means.

I spoke to the Chief Executive of the
Cornwall & Isles of Scilly Health Authorities at a Public meeting in
June 1995. He advised me to write to the Ombudsman. The Health Ombudsman
replied that my complaint was out of time. I passed this information back
to the Chief Executive who then advised me to write to the Secretary of
the Cornwall Community Health Council"

Jean has also tried to make representation
to the Secretary of State for Health and the Secretary of the Labour Party,
and to her MP - all to no avail. Jean worked as a lecturer before she retired.
She is a widow and lives on her own. The faulty hip replacement only allows
her to hobble because the hip is unable to take her full weight. She has
even made a statement that she does not intend to take legal action - all
she wants is to be mobile again. 

This year Jean contacted "Age Concern"
,which was inviting the elderly to get in touch if they have had problems
with their health care. Jean is now 74 yrs and has spent a decade unable
to walk properly , through no fault of her own. Jean received this reply,
containing the following comments:

You have certainly been
fastidious in your efforts to complain .........even
your communication with the Ombudsman is now several years old, and I doubt
that you would get anywhere. Age Concern has recently published a report:
"Turning your back on us: older people and the NHS" which looks at discrimination
of older people by the NHS. It may be helpful to have the report to hand
when contacting you MP, should you wish to pursue the matter further with
him/her. If so please, contact my secretary. In view of all the efforts
you have gone to, I doubt that it is worthwhile trying to further pursue
these "

It was obvious that no one could have
read Jean’s letter thoroughly for on page 3 Jean clearly stated that she
had already approached her MP. However, Jean was reassured that her information
would be included in anonymous format in their data base which enables
the Charity to draw together key issues which it could then pursue with
the Government. In the meantime, and for the foreseeable future Jean was
to go on hobbling!

SIN’s Comment: The problem with
such "official" Charities is that they seem unable to help the individual.
In fact no one seems able to help the individual patient who is receiving
sub-standard medical care. SIN is delighted that the Queen Mother is able
to have successful hip replacements in her nineties, but will someone please
explain why Jean, also a British citizen, cannot obtain a replacement for
her faulty hip in her sixties and seventies? Is there no compassion?



 

 




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