Related posts:

• About
• Off with the fairies.
• About Talking to People.
• The problem of what does not get said.
• Links

In these reports, the ‘flagship’ Mid Staffordshire Foundation Trust, which everybody in the NHS clinical governance system has been trying so hard to distance themselves from today (details here), came out as a fairly normal, average reporting institution. The implication is that the Mid Staffordshire Foundation Trust, this apparently appallingly managed, target-driven travesty of healthcare, had an approach to patient safety that was about average. So were they lying in their incident reporting? The answer is probably no more than any other Trust, given that the Healthcare Commission rated the trust service quality as “fair” in 2007 and “good” in 2008. Similarly, when poor care was being delivered through the Trust, Monitor’s annual checks found “no regulatory concerns” (see Guardian report here), and gave the hospital four out of five for performance. Trusts are all target-driven and all significantly under-reporting in terms of safety.

There are a great many Trusts that are performing a lot worse in these reports. Some of them are also due to be made Foundation Trusts in the very near future. In the case of our local hospital in the south west for example, which is one of the most poorly performing ones in the NPSA reports (and where our baby died recently due to ‘sub-optimal care’), Foundation Trust status is due to be granted on 1st April. April Fools Day. One of the criteria for becoming a Foundation Trust is supposed to be demonstrating that the quality of care is a top priority. I hardly need tell you what I think about this. Maybe, if we were all to become ‘members’ of Foundation Trusts then we could do something, but the signs from the Mid Staffordshire Foundation Trust suggest that we probably couldn’t.

The events at Mid Staffordshire may well reflect much deeper, more endemic problems in healthcare and leave confidence in NHS patient safety, and particularly the regulation of it, in absolute tatters.

Related posts:

• Professionals’ views about safety in maternity services.
• ‘Extraordinary’ failure of NHS staff to report preventable deaths.
• Hospitals face NHS health checks.
• Another indication of poor NHS lesson learning.
• How more might be learned about Stillbirth and Neonatal Death.

To quote the deputy editor’s comments;

“Over recent years, we have carried a number of papers examining rates of adverse events in babies receiving intensive care. These have contained salutary reminders of the possible harms that can happen, and their frequency, but they have been less helpful in terms of generating and testing practical measures by which errors might be reduced. We would all sign up to the laudable aims of better education, tight and simple systems, and close monitoring of errors and learning from them when they occur, but even these do not reduce rates of error as far as we would all wish. So it is particularly valuable to have the paper by Lee et al bearing a very positive message by reporting the application of structured random safety audits (a system widely used in industry) to the NICU setting. In short: it demonstrably works, and other units should give serious consideration to emulating this system.”

The simple process works like this. Each week there is a ‘grand tour’ of consultants etc through the NICU reviewing cases and talking with staff. Each week the tour picks 2 well-prepared checklists concerning error-prone activities at random from a box. The checklists are completed by direct individual discussion and direct two way feedback with staff as part of the round. Results in terms of % compliance are posted, problematic protocols and staff suggestions are quickly identified. By the second time a given checklist was used, significant improvements were clear. Over time, general ongoing improvements can be demonstrated to everyone involved. According to the authors, provided it is done positively, the staff were very supportive because the feedback was very rapid.

Simple systems like this could be made even more effective if they were linked directly to incident reporting. If every serious incident generated new checklists as a matter of course (i.e. the error-prone activities were automatically identified), then one of the fundamental barriers to good clinical governance (the pessimistic attitude of staff to reporting incidents due to a lack of resulting actions) would be removed, direct local learning feedbacks could accelerate, staff could take some initiative in areas that concern them and safety would rapidly improve in the areas that need it most.

Related posts:

• Professionals’ views about safety in maternity services.
• What is a Serious Untoward Incident?
• One concerned, all concerned.
• Serious Untoward Incident Reporting is a Matter of Life and Death.
• Group B Strep at our local hospital.

But this is not true. Room for improvement is massive. If every health authority was able to perform like the best ones in the country do right now, UK perinatal mortality would be about two thirds of what it currently is. In other words, something like 30% of UK perinatal death is unnecessary. This might sound a bit wishful thinking, but a 30% reduction in perinatal death would only bring the UK into the same bracket as other, even marginally, well off European countries like Portugal and Greece. So, we are not talking about having to learn a lot of new things here, the knowledge of how to do it is already available in the UK, as the perinatal mortality rates of the better authorities clearly demonstrate.

And correcting the numbers for general health and relative deprivation (e.g. hospitals in relatively poor areas serve a population with more social health problems, and that increases mortality rates etc.) does little to change the picture. Of the 30% excess perinatal mortality seen in the UK, at least two thirds of it results directly from differences in medical and health care. This means that at least 20% of stillbirth and neonatal death is preventable by improving medical and health care in relatively failing areas, without having to do really difficult things like alleviate poverty in mothers. If there were access to the better care and better knowledge that is already available elsewhere in the UK, between 3 and 4 baby deaths would be saved every single day.

In an effort to reduce unnecessary deaths, the NHS runs something called “Clinical Governance”. The point of this process is to rigorously learn lessons from so called “sub-optimal care”. Theoretically, it puts structures and processes in place that help the NHS figure out and disseminate life-saving lessons. Because 20% of perinatal deaths are currently preventable by providing adequate care, and there are many Guidelines that describe what adequate care actually is, you might expect that NHS Clinical Governance would be awash with investigations into the perinatal deaths that do occur.

Unfortunately not. The data suggests that currently only about 1 in 8 of the 20% excess, preventable, sub-optimal baby deaths are investigated at all. So, 7 out of every 8 preventable baby deaths are going uninvestigated and unlearned from. Given the NPSA’s estimate of 95% of unreported preventable death generally in the UK, a large proportion of these unlearned from deaths are probably not being reported as preventable anywhere in the system. In CEMACH (Confidential Enquiry into Maternal And Child Health) reports, for example, the lion’s share of causes of stillbirth and neonatal death is still “unexplained” and the implication is that this is because most cases, even the more serious ones, are not investigated. This leaves the NHS, and organisations like CEMACH, SANDS and BLISS, having to guess at the scale of, the reasons for and the solutions to this by definition solvable problem.

Meanwhile, according to surveys like the King’s Fund Enquiry, NHS staff themselves complain that they fill in endless incident forms and do not see any actions or changes as a result. They complain that they see the same incidents occurring over and over again, and that the only hope of breaking the cycle is complaints, litigation or where there is some kind of scandal that hits the papers.

So, it is not only medical and health care that are failing to save babies in the UK. It would seem that Clinical Governance, at least for perinatal death at the moment, is also failing, even where the lessons have already been learned by some.

Related posts:

• How more might be learned about Stillbirth and Neonatal Death.
• ‘Extraordinary’ failure of NHS staff to report preventable deaths.
• Another indication of poor NHS lesson learning.
• Professionals’ views about safety in maternity services.
• What the Coroner does.

Related posts:

• Off with the fairies.
• About Talking to People.
• Clive’s mum’s story
• Funding gap puts maternity reform at risk.
• Professionals’ views about safety in maternity services.

“When a death suspected to have resulted from poor medical practice/care occurs, the coroner’s inquest is very often the only opportunity for the factual circumstances to be investigated. There are no national figures but anecdotal evidence suggests between 7,000 and 13,000 of the 25,000 inquests each year relate to deaths in hospitals. Thousands of deaths caused through incompetent care are never investigated at all particularly those from amongst the most disadvantaged in our society. Of those deaths which are investigated, the quality of the investigation is variable. Coroners are under financial pressures from their local authorities and complain that they simply do not have the resources properly to carry out such investigations. The present system is totally unsatisfactory. The anticipated “urgent official attention” to the problem has only just resulted in a government statement from Harriet Harman QC. A Bill is expected at the end of the year.

Since 1995 coroners have relied upon the decision of the Court of Appeal in Jamieson, to limit the scope of investigation of how the death occurred, interpreting “how” as “by what means” rather than “in what broad circumstances”. The pressure for proper investigations into hospital deaths has increased since the Human Rights Act 1998 came into force and the new legislation will have to be compatible with it.

Under the terms of Article 2 of the Convention for the Protection of Human Rights and Fundamental Freedoms “Everyone’s right to life shall be protected by law…”. It has been argued in a number of coroners’ cases that in respect of unnatural deaths in NHS hospitals the state has an investigative duty under Article 2 - what has come to be known as “Article 2 being engaged”. In Goodson, where a man died from peritonitis from an iatrogenic double bowel perforation, Richards J (as he then was) recognised that the language of the Strasbourg cases is sometimes confusing, eliding the positive and procedural obligations under the Article. The Court of Appeal have recently clarified the position in Takoushis where a schizophrenic at high risk of self harm left a hospital without being seen within 10 minutes required by the system and committed suicide. Article 2 being engaged means that the state itself has an obligation to investigate the death which, since Middleton, is usually done through the medium of the coroner’s inquest. A medical death where there is evidence to support a charge of gross negligence manslaughter falls within this category.

However, the majority of medical deaths are caused by simple negligence. In these cases Article 2 is not engaged in the sense of the definition, but under Article 2 the state still has a positive obligation to set up an effective judicial system. This includes the effective and practical investigation into medical deaths. Importantly, civil proceedings cannot be assumed to be sufficient: the claim may only be for a comparatively small sum such that it would not make practical or economic sense for civil proceedings to be begun; a family may not be able to obtain legal aid; liability may be admitted. In each case an independent investigation of the facts as part of the civil process is rendered impossible.

The inquest thus fulfils a vital role in discharging the state’s obligation under Article 2 even into medical deaths where Article 2 is not “engaged”. The hearing still has to be a full, fair, practical and effective public investigation into the facts in which the family is able to take a full part. Indeed, the only practical difference between Article 2 being “engaged” and not being “engaged” is that in the former, the investigation has to be initiated by the state per se. Although the Court of Appeal was bound by the decision in Jamieson, looking at the way the Court approached the facts, it is clear that Takoushis extends the interpretation of “how” the deceased came by his death well beyond the Jamieson restriction. The new inquest ordered in Takoushis obliges the coroner to conduct a full and proper investigation of the operation of the system at the hospital which allowed the deceased to leave before being seen by a psychiatrist. In practice the inquest into “how” a medical death occurred has become, as it should, an investigation into both the means and the circumstances of the death.

The proposed new legislation on coroners must embrace these principles. Coroners will be full time specialists. Given sufficient training, proper funding and the independent medical expert assistance they undoubtedly require when investigating medical deaths, the inquest in its developing format could satisfy the need for proper inquiries into medical deaths. The full participation of the family of the bereaved will probably require public funds to be made available for representation in appropriate cases. Given an appropriate system for recording and reporting such inquiries, essential lessons for future patient safety can be learned.”

Related posts:

• What the Coroner does.
• What is a Serious Untoward Incident?
• The Scale of the Stillbirth and Neonatal Death Problem in the UK.
• Incident-triggered random clinical audits.
• How more might be learned about Stillbirth and Neonatal Death.

While all this was going on, I sat there reading crappy sci-fi books, or running little errands. Sometimes, someone who had been involved in the birth or our baby’s care in the NICU would peer nervously through the window in the door and come in for a chat about something. At night, I slept on a plastic covered mattress on the floor next to the bed, my body exhausted but dreaming mad dreams and waking up in cold sweats.

Anyway, I was wandering down a corridor in the hospital one day, in that shell shocked frame of mind, and bumped straight into a couple we’d met at our antenatal classes.  They’d left the course before it finished, because the woman was having twins and had gone into labour at about 30 weeks, and we hadn’t seen them since.  We knew the twins were in the NICU and one of them was pretty touch and go, but that was all.

You learn very quickly about talking to people. In the strangely detached world you’re living in, you can see the reaction of others when you tell them what’s happened, as if it was in slow motion. You know that they’ll need to be told, and you know that they’ll feel it like you thumped them in the stomach when you do. Even before you open your mouth, they’ll realize something is wrong and you’ll be leaning in as if to catch them. It’s terrible, the look that goes across their faces. It feels almost violent to tell people. A friend who’d lost a baby perhaps 15 years ago said he felt like he had to introduce himself with, “Hi, I’m Tom, and my baby died.” I didn’t understand that at the time, but now I do.

The other alarming thing about this situation is the contrast between what other people seem to feel, the extent of their reaction, and what you feel on the inside. It’s as if they grasp instantly the awful reality of it all, something you yourself are nowhere near being able to understand. It makes you feel like you’re trapped somewhere very far away from normal. Like post-traumatic stress, I suppose.

“It’s bad news I’m afraid,” I said, looking out from behind eyes that didn’t feel like mine, “He died a few hours after he was born. We don’t know why.”

As they reacted, I said, “I’m sorry.” It was like it was their drama, not our’s. My heart went out to them. Or perhaps, felt like it should, I don’t know.

This little drama is played out over and over again, and you get used to it. At first, I found the detachment very disturbing. My head seemed (and still seems) to be continually trying to paper over this huge hole in our reality with stupid mundane normal things. This is so unstoppable that I was frightened that I wouldn’t remember anything really important, like the way our baby’s lips moved or the shape of his arms, so I would (and still do) fall to sleep replaying the events obsessively, just to keep things alive in there somewhere. But quickly the detachment starts to become familiar. In normal life, the reality of things keeps intruding, keeps replacing itself, unfurling even when things are apparently not changing. In bereavement, something just stops and the clanking, chattering noise from everything else is suddenly deafening.

About a week later, after his mother started getting better, the four of us met up downstairs in the hospital, in a run down little canteen run by volunteer old ladies, for a cup of tea and a chocolate bar together. We talked almost like normal new parents excitedly about the births, about how we were all feeling now, about how we were absolutely amazed by the gorgeousness of our babies, how incredible that pride was in spite of everything, and how strange that no one had told us about this in our antenatal classes. The thing I remember best about it was that, even though their twins were alive, they naturally understood some of the things we were saying because they were suffering from a sort of loss too; a sort of life-changing frustration because they couldn’t just get on with falling in love with their babies.

Related posts:

• Off with the fairies.
• The problem of what does not get said.
• Our little man - George
• Clive’s mum’s story
• One concerned, all concerned.

I think SANDS “Why 17?” could make some important progress by campaigning for the SUI reporting process to occur whenever a stillbirth or neonatal death occurs, and by informing parents and health professionals of the existence of this potentially important alternative to just coming up with something to put on the death certificate.

Unfortunately, the evidence suggests that generally, lesson dissemination is very poor, and our own experience of the process is that even the investigations are themselves done poorly. The reason this is the case is because no one, with the possible exception of the bereaved parents, is really paying any attention to SUI reporting.

The obvious way to make SUI investigations, and the reporting of them, more effective is to make SUIs either actually or potentially peer reviewed documents, more like medical research papers. This would force the staff involved to do a good enough job in their reporting of serious incidents to convince their peers of their findings, as well as help disseminate those findings. In our case, the staff involved in the investigation of the death of our son is yet to produce a report at all, and this means that we are still having to piece together what happened by asking questions. This is a pointlessly lengthy process, and makes understanding what happened and learning lessons from it almost impossible, even for other health professionals. I would imagine that if I was a medical doctor, peer reviewing their investigation reports, there would be a lot more effort going in to explaining things.

Lastly, unlike many other countries, the UK does not have a national network for NICU’s etc, where the dissemination of reports can easily occur. This situation means that even where something is learned locally, it has no way to spread except on the back of other slow processes like the medical literature. This sort of national collaboration is important for other reasons too (for instance, the recognition of GBS outbreaks), and is another extremely useful issue for SANDS “WHY 17?” to campaign on. By making a national network for SUI reports to disseminate within, peer review would also be encouraged.

Related posts:

• The Scale of the Stillbirth and Neonatal Death Problem in the UK.
• Serious Untoward Incident Reporting is a Matter of Life and Death.
• Professionals’ views about safety in maternity services.
• What is a Serious Untoward Incident?
• NHS patient safety concerns gather momentum.

• recognition that stillbirth and neonatal death is a national problem and not just one of those things,
• a national strategy to reduce the number of stillbirths and neonatal deaths in the UK,
• and funding for more research to improve understanding of why stillbirths and neonatal deaths happen, and to identify high risk pregnancies and develop effective interventions.

The campaign will be launched on 4th March 2009 at an event at Parliment, when a new report ‘Saving Babies’ Lives’ and the results of a survey of bereaved families’ experiences will be delivered.

If you’d like to have your say, then contact Sands via this page. They’ll send you a link to an online survey which covers various areas about the loss of your baby. It didn’t quite fit things in our case, but there was plenty of room to add our comments, and it didn’t take us all night to complete.

The website also suggests contacting your local MP so that they turn up at the event. Perhaps this is something we could arrange as a group? Perhaps we haven’t got enough time?

Related posts:

• The Scale of the Stillbirth and Neonatal Death Problem in the UK.
• How more might be learned about Stillbirth and Neonatal Death.
• ‘Extraordinary’ failure of NHS staff to report preventable deaths.
• Hospitals face NHS health checks.
• NHS patient safety concerns gather momentum.

In face-to-face interviews with 179 surrogate decision-makers for patients in four separate intensive care units (ICUs), 87 % of caregivers indicated that they would want to be told of all prognostic estimates, even if the estimates were tentative. Most also indicated that they appreciated a physician’s candour in discussing uncertain outcomes as honest, rather than seeing it as a source of confusion or anxiety.

According to the study published in the American Thoracic Society (2009, January 5),

“they needed to begin to prepare for the chance that their loved one might die, and so begin the bereavement process … and want to have the opportunity to take care of unfinished personal business before their loved one dies. They need that chance to say their goodbyes, in case the patient does die.”

Although physicians often wish to shelter their patients and patient families from what might seem to be harsh realities, the human spirit is resilient and sheltering them often leads to unnecessary distress in the long run anyway.

Related posts:

• Serious Untoward Incident Reporting is a Matter of Life and Death.
• ‘Extraordinary’ failure of NHS staff to report preventable deaths.
• Hospitals face NHS health checks.
• Group B Strep at our local hospital.
• One concerned, all concerned.