A Solution to the Alder Hey Problem?
MD was recently invited to a high-level meeting at the Department of Health to discuss, amongst other things, what to do about the Alder Hey problem. The charge sheet against Alder Hey is long and complicated (Eyes passim ad nauseam). While no hospital is able to provide the highest standards of care for all its patients at all times, the main concern is that the culture of secrecy, bullying and poor practice that allowed the organ retention scandal (1988-1995), persists today.
The culture of fear, secrecy and the silencing of whistleblowers is not unique to Alder Hey, but as the Bristol whistleblower Prof Stephen Bolsin commented, the best way to resolve bitter NHS disputes is simply to focus on patients. The key questions for anyone charged with investigating Alder Hey is whether children have been harmed by poor care, or whether proper informed consent has been denied for acid reflux operations that are not approved by NICE.
Holding surgeons to account has never been easy. When MD trained, a surgeon could invent an operation of dubious rationale and no evidence base, and carry on for years unchallenged. Another might do an established operation very poorly for a lifetime safe in the knowledge that his or her colleagues wouldn’t speak up and often needed a reference. This club culture was supposed to have changed after the Bristol heart scandal. In 1998, one surgeon was struck off by the GMC and another was suspended from operating on children, not just because their results were demonstrably much worse than elsewhere in the country but because they didn’t tell parents the truth about their results and other centres or options where they might get better, safer care.
After Bristol, the National Institute of Clinical Excellence was established to tell the NHS not just what drugs and operations were effective, but what the NHS could reasonably afford. Patients are entitled to NICE approved treatments, and the NHS should only offer NICE approved treatments unless there is very good reason not to, such as being part of a proper clinical trial to test an unproven procedure. This important principle went horribly wrong recently in the ASR prosthetic hip scandal. 10,000 new hips that were not NICE-approved, were put into UK patients and now failing in disastrous numbers, a huge human and medico-legal catastrophe (Eyes passim). Worse still, this choice of prosthesis was usually completely inappropriate, given very good tried and tested alternatives were available. And many patients simply weren’t told the truth or offered better alternatives when they were ‘consented’.
The same pattern of lack of accountability and action in the NHS and private sector was exposed this year in the scandal of surgeon Ian Patterson, who performed unnecessary, un-evidence based and incomplete surgery for breast cancer for many years unchallenged. The nub of the Alder Hey problem is that senior surgeon Matthew Jones has for many years been performing an operation on children with acid reflux that is not recognised nor recommended by NICE. NICE recommends a fundoplication that wraps part of the stomach around the lower oesophagus to restrain reflux. Jones – in some patients only – adds vagotomy (cutting the vagus nerve), semi-paralyzing the stomach and necessitating that the pylorus get opened and reconstructed (pyloroplasty). This adds risks of leaks and needlessly exposes the operation to contamination by gut microbes. NICE can find no evidence to support this approach, but the potential long term side effects are significant. Neither Jones nor Alder Hey have provided the Eye with evidence of whether children have been harmed in the longer term or whether their parents were given proper consent and realised the procedure was not recommended by NICE and other proven alternatives are available.
The next step would seem obvious. Alder Hey must suspend the procedure whilst a no-blame investigation is carried out as to its appropriateness, to check facts and that proper consent was obtained and see whether children have been harmed in the longer term. In the meantime, no child will be denied treatment, but will get the NICE approved, evidence-based, highest quality treatment that other specialist units in the NHS are currently providing. MD has suggested this course of action to Bruce Keogh, medical director of NHS England and to Mike Richards, Chief Inspector of Hospitals at the CQC. Thus far he has had no response. MD raised it again in the meeting at the Department of Health. If no action is taken now, the NHS has learned nothing from the Bristol and Alder Hey scandals.