The national confidential inquiries into why patients die have saved lives, but funding problems now threaten their own survival. Rebecca Norris looks at their prospects
Between them they hold 99 years' worth of lifesaving data on why people die. But the long term survival of three national confidential inquiries - the Confidential Enquiry into Maternal and Child Health, the National Confidential Enquiry into Patient Outcome and Death and the National Confidential Inquiry into Suicide and Homicide by People with Mental Illness - depends on how well they manage funding pressures and prove their ongoing relevance.
The inquiries emerged in their current forms in 2003, inheriting the extended remits, but not the extra budgets, of previous bodies.
Two years later, under the government's review of arm's-length bodies, the inquiries came under the aegis of the National Patient Safety Agency, which is now their core funder. Devolved UK administrations also contribute some funding and government departments and external bodies pay for bespoke studies.
While the inquiries' remits, report outputs and status vary, they share common origins in evolving from local audits instigated by doctors and academics seeking to improve outcomes by reviewing patient deaths. They all hold to a confidential approach, where samples of cases are peer reviewed by experts after patient, staff and provider details have been meticulously anonymised.
"We're not the police; we don't go and point the finger or try to bring hospitals down. We're here to support professionals," says Marisa Mason, chief executive of the patient outcome and death inquiry. For that reason - and their impact on saving lives, improving practice and influencing policy - the inquiries largely command huge respect from the medical profession.
Royal College of Obstetricians and Gynaecologists president Sabaratnam Arulkumaran points to recommendations from the maternal and child health inquiry that mean doctors now routinely assess the risk of blood clots in pregnant women, for example.
"Direct [maternal] deaths due to various conditions are down dramatically," he says.
The maternal inquiry's findings on increased death risks for women not seen in their first trimester also influenced the new target in the 2008-09 NHS operating framework for women to see a midwife in their first 12 weeks of pregnancy.
"We've never had a target like this before for maternity services," says Professor Arulkumaran, who believes the£330m announced in January for maternity services over the next three years was partly attributable to the maternal inquiry's work.
The inquiry's chief executive Richard Congdon says it has influenced maternity risk management standards announced to trusts by the NHS Litigation Authority. (More than half the total compensation paid out by the authority in 2005-06 was for obstetric cases, according to information released previously under the Freedom of Information Act.)
"Today a maternal death due to a direct obstetric complication is extremely rare. The rate in 1952, when the original inquiry started, was about 10 times higher. But any maternal death is a huge event so it's important professionals are constantly reminded of the safety lessons," says Mr Congdon.
Likewise, the patient outcome and death inquiry has "without a doubt, saved a lot of lives and altered a lot of practice", says Royal College of Anaesthetists vice president Chris Dodds.
"It was the first audit that really showed having people operated on at difficult times of the night - 2am or 3am, when all the support staff were busy or weren't even available in the hospital - had a much poorer outcome than if the same procedure was done in daylight hours," he explains. Such practices were before the European working time directive when "a lot of work was being done by inexperienced surgeons and anaesthetists, with distant supervision".
The inquiry classified procedures into emergency, urgent or scheduled for the first time and led to the NHS introducing "CEPOD" theatres - staffed, equipped and dedicated to emergencies, so as not to impinge on elective caseloads.
Professor Dodds says: "I can't think of any hospital now that doesn't audit cases done after midnight to see whether they should have been. If you're hit by a bus you need to be operated on whatever time it is. If you have bad appendicitis, usually you can go to theatre in a timely manner."
Louis Appleby, who is both director of the inquiry for suicide and homicide in mental illness and the Department of Health's national director for mental health, says this inquiry's first report in 1999 resulted in a government target for wards to remove non-collapsible curtain rails, reducing hangings on inpatient wards. The report also influenced the national suicide prevention target and national service framework for mental health introduced in the same year.
A Royal College of Psychiatrists spokesman says the inquiry's findings on increased risks for patients not taking medication influenced the introduction of community treatment orders under the new Mental Health Act.
The three inquiries accept they cannot rest on their laurels.
All face dilemmas and greater scrutiny from the NPSA, whose corporate plan for 2008-11 commits to developing an overall strategy for the inquiries that promotes "effective planning, sound governance and best use of resources in order to promote safer, better patient care".
The maternal inquiry's main challenge is winning funds to fulfil the extended remit it was handed in 2003 to examine child deaths, as well as reinstating work it has cut.
Mr Congdon says: "It was a big funding reduction of 40 per cent when we started in 2003." The inquiry's child mortality surveillance work has been limited to a five-region pilot study.
"We've been able to put about£300,000 into the child health work to date. That's about 10 per cent of the total money that goes into all three inquiries.
"Our pilot study identified there is a lot more that could be done to prevent these deaths."
Mr Congdon is lobbying the DH, via the NPSA, for an extra£700,000 to make the child work national and for funding to reinstate full perinatal surveillance. The inquiry will also approach the Department for Children, Schools and Families and try to raise revenue from primary care trusts and the new safeguarding children boards, run by local authorities. These boards now monitor neonatal deaths in return for providing local benchmarked reports.
The inquiry is breaking away from its current host, the Royal College of Obstetricians and Gynaecologists, to become an independent charity. The move is intended to create more links outside of health and to reflect its child work. It has also been prepared to take drug company sponsorship for smaller studies, which Mr Congdon says is not a problem, "so long as we have editorial freedom".
The patient outcome and death inquiry has ruled out drug company funding, as Ms Mason says it does not want to "jeopardise" the respect in which it is held by clinicians "by seeming like we could be influenced by our funders".
That same goes for its relationship with the NPSA. "We work hard to keep a separation between us," she adds.
The patient outcome and death inquiry's main challenge is keeping on top of a huge remit. In 2003 it was asked to look at deaths after all medical interventions, not just those after surgery.
"We used to collect data on all deaths within 30 days of [surgery] - about 20,000 a year - and would then do an in-depth review of 2,000 of them. When our remit changed, hospitals started sending us all deaths in hospitals, up to 280,000. We did this for two years and then stopped it because we weren't doing enough with it and it was a waste of time for us. Now we just collect samples of data in different topic areas and produce themed reports."
But this inquiry has the resources to fund only two out of the 30 study topics suggested each year, she says. Dropping routine mortality surveillance is not a huge loss given the lack of change over small time periods, she adds, but the inquiry would like resources to revisit the impact of past reports in three or five-yearly investigations.
Ms Mason admits there is a risk of "audit fatigue" among clinicians, with many organisations inspecting healthcare, and a challenge in promoting its work to new doctors.
She hopes to persuade the DH that the inquiry could have a role in league tables, set to be extended to every medical specialty later this year.
"Our latest report on heart bypass showed it was organisational issues, team working, communication and other aspects that led to poor outcomes. It wasn't just down to a bad surgeon."
The inquiry for suicide and homicide by people with mental illness faces the most vociferous views of all inquiries.
"A previous review shows one person in 20,000 with schizophrenia will kill someone each year, so 19,999 won't. You cannot predict which one will, although you may be able to boil it down to people with a history of violence.
"But I think a third of homicides are committed by a patient not even known to mental health services. So you've got to improve services all round in terms of accessibility, reducing stigma and the quality of care you provide," says Dr Turner, adding that he believes acute wards needed for crisis patients have been "constantly cut and cut".
Professor Appleby says it is "too glib to say we need a fantastic increase in resources to solve the safety problem. It's also about clinical practice and how we're trained."
He says he never intended the inquiry to be "a lobby group against government policy". He points out the inquiry has responded to calls to pull together themes from local independent homicide inquiries. He adds: "We are in discussions with the NPSA about publishing more frequently, instead of very comprehensive reports every three to five years where some of the more subtle messages get lost."
However he is adamant the mental illness inquiry has provided "definitive data" on the "sensitive and controversial area" of homicides.
"We have shown attacks on strangers are less likely to be linked to mental illness than any other type of fatal attacks. We've introduced community care over the past two decades without any increased risk to the general public."
Total suicides by people with mental illness have remained about the same at 1,300 a year, as have homicides, at about 50 a year, according to the inquiry's last report, in 2006.
"Not seeing a reduction is disappointing," says Mind policy officer Alison Cobb. "But at least we know which practices are associated with homicide, suicide and sudden deaths. It should be possible to reduce deaths among the population who are receiving care."
NPSA medical director Kevin Cleary says the agency is very happy with the performance of the inquiries but believes they will continue to evolve.
"What clinicians and the public require of them will probably change. The agency takes a more holistic view: of whether they are producing information that clinicians and organisations can use to improve practice."
The agency does not monitor the implementation of inquiry recommendations at individual trust level. So how do we know if the inquiries are making a difference?
"That's a very complex area," says Dr Cleary. "At one level it is down to local boards with their clinical governance procedures to ensure they are aware of the findings of the inquiries and how they relate to practice in their hospitals. Obviously the regulator may have an interest in what they have to say, the DH will certainly have, individual clinicians do as well, as we do as an agency."
Patients Association spokesperson Vanessa Bourne calls for the findings of the inquiries and other safety audits to be made meaningful for patients. "We had a call to our helpline from a mother whose child needs an operation which could be carried out by one of three surgeons. But no one will tell her who is the best, even though people in the know will have an idea who they would go to themselves."
In confidence: a brief history of the national inquiries
The Confidential Enquiry into Maternal and Child Health was launched in 2003. It subsumed the Confidential Enquiry into Maternal Deaths (launched 1952) and Confidential Enquiry into Stillbirths in Infancy (launched 1992) and took on extended remit to also cover child deaths.
Hosted by the Royal College of Obstetricians and Gynaecologists, it is set to become an independent charity and limited company this year.
It carries out ongoing surveillance and annual reporting of maternal and perinatal deaths, triennial reports on causes of maternal deaths and theme-based national research including a current study on obesity in pregnancy.
The National Confidential Enquiry into Patient Outcome and Death subsumed the National Confidential Enquiry into Perioperative Deaths (launched 1988) and was given extended remit also to cover deaths in medical specialties at its launch in 2003. A charity and limited company, its steering group is made up of nominated representatives from medical royal colleges and associations who vote in a secret ballot to decide topics for theme-based inquiries.
Its latest report, published in June, into cardiac bypass surgery, urged improvements in managing post-surgery complications. Its next report, due out in November, will be on patients who die shortly after anti-cancer therapy.
The National Confidential Inquiry into Suicide and Homicide by People with Mental Illness was launched in 1996 and had its remit extended in 2003 to include sudden unexplained deaths in psychiatric inpatients. Based in the psychiatry division of Manchester University's school of medicine, its work is informed by a steering group chaired by a leading psychiatrist. It collects data on suicides and homicides by people with mental illness or in previous contact with mental health services and publishes five-yearly reports. Future work includes a planned study on people with mental illness as victims of violence.