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.

The Black Hole

The NHS in England alone is facing a £30 billion deficit over the next five years, as demand in just about every area outstrips both the supply of services and the funding for them. Ed Miliband’s extra £2.5 billion a year would plug the debt for 2015-2016 but not cover it subsequently, leaving nothing to pay for 36,000 more staff he has also promised. He is right that the NHS is hitting the wall now, with over two-thirds of acute hospitals in England failing to balance their books this summer and five of the key waiting times standards missed, including the maximum of two-month waits of urgent GP referrals for treatments. David Cameron’s promise of a marginal year on year increase does nothing to address this. The bottom line is that if no party is prepared to fund care for a population living longer, patients will have to wait longer for care, accept brief, poor quality care or not get it at all.

NHS England has allowed the £400m normally used for ‘winter’ planning to deal with this backlog, and is doubtless praying for a warm January. But NHS England has very little control over what devolved Foundation Trust hospitals do to balance the books. On August 26^th, Andrew McKirgan, Executive Chief Operating Officer of University Hospitals Birmingham NHS Foundation Trust sent a blunt letter to the chiefs of Clinical Commissioning Groups (CCGs) who are just outside their area.

‘I am writing to inform you of a change to how the Trust manages GP referrals from your Clinical Commissioning Group. Unfortunately due to an unprecedented year on year growth in GP referrals to our local district specialties we are no longer in a position to combine patient choice with a guaranteed maximum 18 week waiting time. Following discussion with our local Clinical Commissioning Group we have taken the reluctant decision to no longer accept referrals into a number of our clinical specialties from GPs that reside outside our local catchment population.  

Those specialties initially affected are Pain, Dermatology and General Surgery. As a result these specialties will be removed from Choose & Book and any written referrals received by the Trust will be returned to the GP immediately for referral to an alternative hospital. In addition a letter will also be sent to the patient explaining that we are sadly unable to accept their GP referral with a request to them to contact their GP regarding a referral to another hospital.   We are unable to confirm at this stage how long these measures will remain in place however we will continue to monitor our waiting’

The freedom of Foundation Trusts to fiercely protect their own finances was pushed through by Tony Blair against the wishes of English MPs but passed with the backing of careerist Scottish Labour MPs who’s own country and constituents do not have a corporatized NHS. The result is that NHS England the Department of Health and CCGs have much less power to deal with NHS debt, leaving the market and the media to decide which services continue to be funded. Mental illness has never attracted the same kudos or funding as cancer and heart disease, even though it costs the economy £70 billion a year and those with mental illnesses have much worse physical health. Mental illness also tends to start in adolescence, and yet Child and Adolescent Mental Health Services (CAMHS) across the NHS are in crisis (Eyes passim), as this consultant told the Eye:

‘We get on average 17 new referrals a day of young people with serious mental health issues. We are so overloaded and the staff are so stressed that many of them have gone off sick, making it even harder for those of us who remain. We simply have to refuse many referrals even though I know young people need us and they will get worse without us. I may have to choose between seeing a young person who has self-harmed for a year, and a young person who has done it for a week. The person who has self-harmed for a year will be absolutely desperate, but I will be more likely to achieve a positive outcome for the person who has only harmed for a week. Who should I see? How do I allocate these precious NHS resources? Do we have to wait until a young person we’ve turned away commits suicide before somebody sits up and notices how we are struggling to cope? And we’re struggling to cope because the communities our young people live in are struggling to cope. There is a very, very big mental illness iceberg out there and it’s showing no signs of melting.’