Restoring confidence

Six months after Michelle Stewart’s mother-in-law Sarah McGinty passed away she was reading the local paper and spotted a story about a woman who had died after becoming infected with Clostridium difficile.

C. difficile had also been listed on Sarah McGinty’s death certificate after the main cause of death, a stroke. At the time, Stewart says the family didn’t think much about its inclusion on the death certificate as they didn’t know much about the infection and hadn’t realised how dangerous it could be. On reading the article, however, and realising that the woman mentioned had been admitted to the same ward as her mother-in-law on the night she died, the family decided to research it further and became angry by what they learned. They told their own story to the paper and then, Stewart says, the case began to “snowball”, and it became increasingly clear that they were by no means the only family affected.

Overall, a total of 55 patients developed C. difficile and 18 died at the Vale of Leven hospital in Dumbarton between December 2007 and June 2008.

Prompted by local MSP, Jackie Baillie, the families agreed to meet to share their stories.

“As the night went on we were getting angrier and angrier because the stories were all so eerily familiar,” says Stewart. “It seemed as if the same mistakes were being made over and over again. And that’s when we decided, we can’t let this go. We can’t walk away because this can’t be allowed to happen again.

This is an actual nightmare; people have died when they didn’t need to.” By coming together to form the C-diff Justice Group the families were able to use their shared experiences to comfort each other, which Stewart says meant there was always someone to turn to when anniversaries or special occasions brought new waves of sadness. But it also meant they could present a united front in their calls for answers, which Stewart says made them hard to ignore.

“I think if it was only one family going up against the health board and the Government to ask the questions then it is so easy to brush you under the carpet and say we don’t need to answer these questions, but when you are going up against a whole host of families who have gone through something it is just so much stronger,” she says.

Together the group has campaigned relentlessly for standards to be raised in hospitals across Scotland and pressed the Government to agree to a public inquiry into what happened at the Vale of Leven hospital, which has now begun. And when one member of the group, a teacher, pointed out the incongruity that she could find inspection reports for her local school, restaurant and even for the WRVS café inside her local hospital, but not for the hospital itself, the families began calling for an independent inspectorate.

In April 2009 Health Secretary Nicola Sturgeon established the Healthcare Environment Inspectorate (HEI), to undertake announced and unannounced inspections of each acute hospital in NHS Scotland at least once every three years. Operating independently from the Scottish Government and NHS boards, the inspectorate was created to “put Scotland’s hospitals under the microscope”, Sturgeon said, and she urged it to “leave no stone unturned”.

Last week the inspectorate published its first annual report, which reflects on its first year of inspections.

“I think the inspectorate has definitely driven improvement in the care patients receive and is helping to minimise the risk of healthcare-associated infections through inspection,” says HEI chief inspector, Susan Brimelow.

The inspectorate has adopted a “patients’ perspective” in conducting its inspections, she says, adding that she is encouraged to have seen improvements over the year.

“How do I know that? Because we’ve been back into some health boards – three, four, five times to different hospitals within a health board - and we can see that they have taken the lessons from the earlier inspections into practice.” However, while she says that Scotland’s hospitals are “generally clean and improving”, she also identifies key areas where more work is needed.

At the top of that list is a call for rapid improvements to the cleaning of hospital equipment, which Brimelow argues is the one area that if it is addressed in the next year would see the most significant improvements. The appearance of equipment, such as mattresses, chairs, bedside tables, commodes and the undercarriages of beds, is a very visible sign as to whether care has been taken over cleanliness in a hospital, she points out.

“It is a confidence issue,” says Brimelow.

“The public needs to feel sure that the hospital is clean and they gauge that by the environment, how staff conduct themselves and how clean the equipment is.” However, the report also notes that the poor state of repair and physical condition of some wards and departments makes it difficult for staff to keep them clean, and called for more effective systems for recording and managing maintenance and repairs to hospital buildings and grounds to be put in place.

“There is often not a system for recording when repairs needed to be done, when they were going to be done and when they had been completed,” Brimelow says. “So we found, particularly when repairs are needed to be done, it is very, very difficult, for example, if a floor is damaged then it is very difficult to keep that clean.” Overall, the inspectorate carried out 36 inspections in its first year - 30 of which were announced, for which boards were given four weeks’ notice, and six unannounced. This split was a deliberate decision for the inspectorate’s first year, Brimelow explains.

HEI chief inspector, Susan Brimelow“That was a decision I took very early on because we are a new inspectorate - the people didn’t know me or my inspectors - and we felt that we would enjoy a better working relationship, one of trust, if we announced in the first year. So staff got used to what we were looking for and we were open and transparent about what we were looking at and who we wanted to see.” In its next year, however, Brimelow says the inspectorate intends to increase the number of unannounced inspections, as she says this will give the inspectors an opportunity to determine what is actually going on at the point of care delivery, adding that she believes this will lead to sustained improvements.

Labour’s shadow health secretary Jackie Baillie says the shift towards more unannounced visits is a “really positive” step.

“I have heard anecdotally of the huge efforts made by health boards and hospitals knowing the inspectors were coming - the smell of fresh paint must have been quite astonishing to the staff involved too. So I think more unannounced visits will get a much clearer picture of what still needs to be done.” Baillie describes HAI as her “top political priority”, thanks largely to her close involvement working with the families affected by the outbreak at the Vale of Leven hospital, and welcomes the attention that has been paid to the issue in the years since.

“I think it is a vast improvement compared to our starting point, which was, certainly for me on a personal journey, the 18 deaths from C. difficile at the Vale of Leven hospital. It brought home to me just how poor some of our procedures were and how complacent we were.” The outbreak demonstrated the importance of seeking to prevent as well as control infection, she says.

“I went back to the debate that we had in Parliament when Margaret Curran was the shadow minister and we debated HAI and the Government talked exclusively about MRSA and didn’t once mention C.

difficile, and within a matter of months, we had the worst outbreak of C. difficile in terms of mortality rates anywhere in the UK. So I think the lesson for me is that you can’t afford to be complacent when you are talking about tackling HAI.” The public, rightly, expects government to be constantly scanning the horizon for new and emerging threats, she says.

“I am very mindful of the need for government to look to the future. So it is about understanding what the next superbug will be, because microbes are evolving in real time. How do we prevent another C. difficile outbreak at a hospital like the Vale in the future? How do we stop people dying of C. difficile?

“Being able to forecast is indeed powerful, but being able to prevent needless deaths is, I think, critically important. So I would want to be looking ahead - whether it is a national reference laboratory, whether it is learning from others in a good practice unit, whatever that might be, it is about very much looking ahead to the future and making sure we contain HAI, both the ones we know of now and the ones we’ve yet to name in the future.” With this in mind, earlier this year the Scottish Antimicrobial Prescribing Group and Health Protection Scotland, which has a coordination function in respect to HAI as well as a broader role as the public health organisation that is responsible for monitoring infectious agents and environmental hazards, published their first annual antimicrobial resistance report, presenting information on the use of antimicrobials within Scotland and also patterns of antimicrobial resistance.

“In the coming five years, the thing that will become important is these emerging antimicrobial resistant organisms, because the trouble with those resistant organisms is that they are clever. They mutate. They have developed their resistant mechanisms,” explains Professor Jacqui Reilly, Head of the Healthcare Associated Infection and Infection Control Group at Health Protection Scotland.

She continues: “There are no new antibiotics being developed and if there are no antibiotics to emerge and we have organisms becoming so clever that they have become resistant to most of the antibiotics, you can end up in a situation where the organism can’t be treated. And that is something that we would want to avoid.” Antibiotic resistance, which emerges through over use of antibiotics, is recognised as a major threat to public health and patient safety. Clinicians have a responsibility here around antibiotic prescribing, but so too does the public, says Reilly.

“Over the last few years, we’ve had campaigns out trying to encourage people not to expect antibiotics for the common cold, because they don’t work for the common cold. Trying to reserve antibiotics for infections and not overusing them will slow down the use, and if you slow down and reduce the use of them then the emergence of the resistance mechanisms in the organisms is also slowed down.

Stemming this resistance is “a really important public health goal” for Health Protection Scotland, Reilly says.

“I suppose we would use the term antimicrobial stewardship, but it is really just being very prudent about the use of antibiotics.” Hand hygiene is another simple, but incredibly important intervention, she adds.

“It has a very important role. In fact, the World Health Organisation, which is the leading authority on infection, sees it as the single most important intervention in healthcare.” Organisms can transfer from an environment to a patient, or from patient to patient, via the hands of healthcare workers, so it is important to get hand hygiene compliance as high as possible to reduce the risk of cross infection. Here, simple interventions such as ensuring there is alcohol hand gel placed at every bed has made it easier for staff to do the right thing, she says, adding that Health Protection Scotland’s latest bi-monthly report indicates that compliance is now around 95 per cent.

“So while there is still room for improvement, that is a very good level of compliance compared with many other countries now,” she says.

Rates of HAI in Scotland are also improving overall, she points out.

“The first and last time we did a national prevalence survey where we actually went in and took a snapshot of every single hospital was a report we published in 2007 and that was a comprehensive report looking at the prevalence of every type of HAI. That report is where the figure one in ten patients in any given hospital have an infection comes from.” Health Protection Scotland is provisionally planning to update the report and data next year, she says. However, it also routinely reports on key types of HAI, which it publishes on a quarterly basis. S. aureus bacteraemia has been monitored since 2001.

“The reason we monitor it is because it is the organism that causes most HAI, so it is a good indicator organism to use,” she says.

More recently, it also began monitoring rates of C. difficile, and both sets of data show that the last 18 months to two years have seen “statistically significant” reductions in infections across NHS Scotland.

“For S. aureus bacteraemia, we’ve seen about a 30 per cent reduction over the last couple of years. For C. difficile, it is just about 44 per cent reduction over the last 18 months or so,” she says. “So real inroads have been made in reducing infection, but [there’s] still some way to go because the burden of infection is still there.

But, certainly, we are headed in the right direction.” However, as Scotland continues to scan the horizon, it is important that we also take the opportunity presented by the ongoing public inquiry to pause, reflect and remember why tackling HAI must remain a key priority.

For those families affected by the outbreak at the Vale of Leven, it is particularly important that the inquiry gets to the truth of what happened there.

“That is all we have wanted from day one,” says Stewart. “It has never been about blaming people. It has never been about saying they should lose their jobs. We never thought that because the people who are doing these jobs are too important for us to lose. We’ve always felt it was systems failures and that needs to be looked at.” Their primary motivation in pushing for the inquiry has always been to have their losses recognised, and to ensure that no other family is touched by the tragedies they experienced.

“That is the main thing for us. At the start of this if they had come to us and said, ‘We have made big mistakes here. We made a mess. We apologise. We are sorry. We are going to put things in place to change it,’ I don’t think it would have gone as far as it has. I think we would have walked away quite happy because that is all we have wanted since day one,” says Stewart.

The families know that the inquiry can’t bring their loved ones back, but Stewart is hopeful that it will bring them closure.

“We’ve lost them forever - they are not going to be there this Christmas or the next - but if one family benefits from everything we’ve done and it saves a life, then to us, that is worth it.”