The Trust originally agreed to set up an "Independent  Inquiry" to allay concerns of the Brompton families only. However, when the results of the paediatric cardiac surgery results were released from the Bristol Royal Infirmary Inquiry in November 1999, and showed that Harefield Hospital's performance was "worse than average in the case of children over one year" and indeed scored only better than the BRI, which was at the bottom with the highest mortality rate for children over one year, being double the national average. In the light of these statistics, the Trust agreed to extend the Inquiry to include families from Harefield.

A total of 49 families were represented in the Inquiry, 42 children had received cardiac  treatment at Brompton and 7 at Harefield. Of these 49 cases,  less than a third (14) represented Down Syndrome children, all of whom had been under the care of Brompton.  The larger group of 35 children included all 7 cases from Harefield and the remaining  28  from Brompton.  Most of these children died (26), 6 suffered severe brain damage, and 3 successfully survived.

The latter group set themselves up as "The Brompton and Harefield's  Heart Children's' Action Group" (BHHCAG) which is chaired by MS Josephine Ocloo,  who  had made the original public demand for an  Inquiry into the concerns of the aggrieved families. The Down Syndrome families were represented by "The Down's Heart Group" and "Down Syndrome Association"

The Panel, consisting of :
The Chair : RUTH EVANS,  currently Lay Member of the GMC;
                   former  Director of the National Consumer Association
Members: NORMA  BRIER Chief Executive, Norwood Ravenswood 
                ( an organisation for disadavantaged and disabled children,
                  adults and their families)
                  FLEUR FISHER: Chair of POPAN  ( Prevention Of Professional 
                   Abuse Network), former Head of Ethics, Science & Information,
                   BMA
                   SARAH LEIGH: Solicitor specialising in medical negligence & 
                   Secretary of the Clinical Disputes Forum. 
                   CAROLINE LANGRIDGE: Secretary to the Inquiry.
                    Dr. NICK ARCHER Consultant in Paediatric Cardiology
                      John Radcliffe Hospital, Oxford ( Brompton parents)
                   Dr. BARRY KEETON Consultant in Paediatric Cardiology ,                     Southampton General Hospital, former employee at the Royal 
                   Brompton  Hospital  ( Brompton parents)
                   Dr. JOHN WRIGHT Consultant Paediatric Cardiologist &
                   Head of Cardiac Services, Birmingham Children's Hospital
                   ( Harefield parents)

After 18 months of hearing evidence, The Panel's final report was launched at a Press conference in London on Monday, 2nd April 2001. Prior to the Press Conference at 11 am, a large number of parents, family and friends staged a vocal, but peaceful demonstration outside the building.
 
 

PARENTS SLAM INQUIRY  AS AN "INSTITUTIONALISED "COVER UP

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SIN Web site is pleased to to publish details of  Josephine Ocloo's Press Release, dated Sunday,1st. April:

The parents of dead & brain damaged child patients at the Brompton & Harefield , have dismissed the Inquiry into their cases as a 

 Later, on  Monday, 2nd April, Josephine Ocloo, Chair of the BHHCAG, commented at the Press Conference: 

"As parents we feel that we have been lied to and tricked into participating in this sham of an Inquiry, which by-passes our concerns almost entirely. Mark Taylor, Chief Executive of the Trust should now resign.

It has singularily failed to penetrate the secretive, sinister and unaccountable world of medical decision making, or to identify the processes of concealment which are triggered in hospitals when ever families demand answers. Once again, the rights of patients and their families have been fundamentally ignored.

Further, we question the "independence" of the Inquiry, which was commissioned by the hospital itself. On reading the Report, we are especially outraged that a medical member of the Inquiry team is actually a former employee of the Brompton. 

After 18 months, we still don't know why our children died  or were brain injured, who was responsible and who will be held accountable. We now want a a full Public Inquiry, backed by the Secretary of State, and will be requesting a meeting with him forthwith"

".....How do families ever go on to get answers if medical records go missing? Why is it that there was such a systematic pattern with all of our families of crucial missing records? You cannot get justice by bringing a legal case if you don't have medical records... "  Josephine asked for the disappearance of medical records to be made a criminal offence. 

Quote from the "Observer"  1st. April, 20001: "...Josephine Ocloo, who heads the parents' group which is involved in the Inquiry, said  that the hospital had treated her shabbily, and that with different medical care her daughter, Krista, might have survived the heart defect which killed her in 1996 at the age of 17...."

Margaret MacRae, whose 13 year old son was treated at Harefield and died in 1999 following unsuccessful heart surgery,  her  statement  contained the following comments:

"....between January 23rd. and February 2nd , David's body  was subjected to 12 surgical procedures under general anaesthetic, including the removal of blood clots from his chest and the amputation of his right leg.........The members of this so called "Independent" Inquiry are well aware of the facts pertaining to the treatment David received at Harefield Hospital. However, the magnitude of this catastrophe has  been completely downgraded despite the exceptionally serious circumstances of David's case. A conscious decision appears to have been taken to make only a few fleeting and misleading references to this atrocity [in the Report]. I whole heartedly endorse Josephine's demand for a full Public Inquiry".

 "Her daughter, Rose, was operated on at Harefield in 1992, at the age of 8, having been born with a congenital heart defect. Polly and her husband were told that Rose needed to have corrective surgery. One doctor told then that the operation was routine, and by another that it was complex, but buy no means unique. At no time were any risks of brain damage discussed with them, and they consented to the operation. 
As a consequence of the operation, Rose suffered severe brain damage. No steps were taken to counter neurological damage until the 8th post operative day, although in the  family's view this was evident from the third or fourth day. They believe that intervention could have taken place at this stage which may have minimised Rose's neurological damage. On the  9th post operative day a doctor  claimed that nothing had gone wrong during Rose's surgery, and that there was a definite chance of a full recovery. The family has never had an acceptable explanation of what happened to have caused  the brain damage.
Rose is now almost 17. She is registered blind, unable to speak, cannot feed herself, has cerebral palsy and can communicate hardly at all. She is entirely dependent and attends a school for the physically and mentally disabled. Her parents have been unable to sustain legal action because of the costs involved. Rose's parents are asking for compensation for Rose".

In our opinion, the Ruth Evans Report has failed to address the real concerns of our families. Many of us were lied to and tricked into handing over our children to a hospital which fell below the standards one could expect beyond all reasonable doubt in a Western European country with a sound economy. Randonmised clinical trials, termination of life support , stripping and retention of organs - all without parental consent - have no place in a society committed to human rights. These are the concerns we brought to the Inquiry Panel. The Panel, on the other hand, chose to focus on poor communication and counselling facilities and pointed a finger at the Hillingdon Health Authority for sub optimal standards affecting possibly poor surgical outcomes. There was no attempt to highlight professional misconduct or negligence- i.e. concerns of the families who participated in this Inquiry.
I personally feel that this Inquiry was set up to exonerate these hospitals of all professional misconduct and blame for the poor surgical outcomes of our children.
We ,the Action Group, now demand a full Public Inquiry.

"My recommendation would be for medical staff to spend a period working in a hospital abroad, to observe methods, standards and ethics practised in other countries."