Josephine Ocloo campaigns to give a voice to those who feel they have been wronged by the medical profession, writes Mark Gould.
JOSEPHINE OCLOO was recently named a World Health Organisation (WHO) patient safety champion for her campaigning work in giving wronged patients a voice and improving safety in the NHS. She has just completed a doctorate in patient safety, works as a researcher in patient safety and is a member of the UK's Department of Health committee looking at reforms to health worker regulation.
Underlying her involvement in this area is a personal experience of how hospital care can go tragically wrong. For 11 years, Ocloo has maintained that medical negligence was the cause of the death of her 17-year-old daughter, Krista. But her struggle for a full investigation examining all the evidence has been stymied at every turn.
Even now, with the personal support of the chief medical officer, Sir Liam Donaldson, she has been unable to persuade the General Medical Council to investigate evidence that appears to support her allegations.
The evidence, seen by the Guardiannewspaper, raises concerns that a court investigation, which found no evidence of medical negligence, was compromised by the removal of important notes from Krista's medical records that made it clear her condition was "potentially lethal".
Krista was born in 1979 with a serious heart defect that was corrected by the Royal Brompton hospital in London. She was happy and healthy until 1995, when she developed chest pains. She went back to the Brompton for an exploratory catheterisation - where a tube is inserted into the heart via a blood vessel - and was told everything was fine.
But 11 months later, in December 1996, Ocloo found her daughter dead in bed. The postmortem revealed acute heart failure, but the coroner denied Ocloo's request for an inquest, despite the mother's serious concerns about the circumstances of Krista's death.
Ocloo went through the NHS complaints system and then to an independent review panel, both of which found no evidence of negligence. After hearing concerns raised by a whistleblower about baby deaths at the Royal Brompton, Ocloo decided in 1998 to go public. Around 45 other families contacted her with a wide range of concerns, including a number of parents of children with Down's syndrome, who commonly require corrective heart surgery.
Ocloo became the voice of the group campaigning for a wider inquiry. The Royal Brompton commissioned an independent inquiry - the Evans inquiry - which reported in 2001 and found that, while acting in good faith, doctors discriminated against children with Down's syndrome by denying them operations. It made 120 recommendations to the hospital, but it was not given the brief to look for evidence of medical negligence on a case-by-case basis.
However, Ocloo, who was by this time a member of the hospital's patient group, helping to implement the recommendations, was personally informed by the inquiry that there was no negligence in her daughter's case. After commissioning a medical expert, who took the view that Krista's care was negligent, Ocloo financed a civil action against the Brompton for damages for bereavement and personal injury.
The judge ruled that the hospital was negligent and that Krista should have been kept under active review. He said Krista's doctor, Elliot Shinebourne, should have told Krista and her GP that her condition was a cause of concern and that she needed to avoid physical exertion and to go back to hospital if new symptoms appeared.
But the case failed on causation - that negligence caused Krista's death - with the judge ruling that Krista was so ill she could have died anyway. Worse followed when the judge awarded costs against Ocloo of £120,000 (€171,400). The subsequent media furore saw these costs reduced to £10,000 (€14,250).
In 2004, a senior lawyer advised that Ocloo had good grounds to appeal, directly related to causation. But the Legal Services Commission refused her funding. Subsequent applications to the European court of human rights and the NHS ombudsman to get the funding decision reversed were unsuccessful.
In December 2006, 10 years after Krista's death, the BBC's Newsnightprogramme interviewed Ocloo. She was subsequently contacted by another grieving mother who had concerns about the care provided by Shinebourne.
Ocloo then searched paperwork she had been sent by other families relating to the Evans inquiry. "I was shocked to find 18 other cases, 10 of which had resulted in the death of a patient, where relatives were seriously dissatisfied with some aspect of Shinebourne's care," she says.
With this new information, Ocloo re-contacted a cardiac expert who worked at the Brompton at the time of Krista's death and who had been prepared to give evidence when Ocloo sued. In a letter dated May 2007 to Ocloo's solicitor, the expert, who does not wish to be named, states: "I have had and continue to have deep concerns about the way Krista was treated, or rather, not treated."
Ocloo wrote to the GMC presenting the evidence. It refused her request for an investigation. Sitting in the same Kilburn flat where her daughter died, Ocloo appears calm and methodical as she recalls the last 11 years. But she is sad and angry that the system has let her down.
- The Guardian