'No, it isn't just an emotional issue' - Robert Craig, Royal Brompton's chief operating officer
For our last appointment of the day, we meet Robert Craig, the chief operating officer at Royal Brompton. NHS England’s plans to close the unit might be emotionally distressing for staff and patients, but if giving other hospitals more consultants, doing regular complex work in bigger hospitals and closing smaller ones improves outcomes, isn’t that the best way to “future-proof” the NHS?
Craig firmly disagrees with that proposition. Instead, he says he believes there are clear-headed clinical arguments against closure.
“Yes it’s an emotional, almost visceral thing for people who work here,” he says. “It was the first adult congenital unit in the country; it’s one of the biggest in the country; our outcomes are among the best and they compare well with the rest of the world. But no, it isn’t just an emotional issue. It’s a logical, clinical question too. Why seek to fragment the biggest centre in the country?”
The Guardian asked Craig to read arguments made earlier on the blog by Prof Huon Gray, the NHS national clinical director for heart disease – and respond directly to his case for closing the unit.
NHS surgeons … must perform between them at least 500 operations a year, which is about three each every week. That is a minimum.”
“We absolutely agree with that, we do more than the standards require,” says Craig.
“There is an argument being made that small, specialist hospitals are outdated. The argument I always make is that there used to be a hospital specifically for skin diseases, which got taken over by St Thomas’s and became a dermatology ward. And we don’t yet have a cure for psoriasis. I’m not saying that’s cause and effect, but I don’t know if something might have been different if we still had a specialist skin hospital. Because you lose the focus that clinicians can identify. Our services are different to the cardiac wards at Hammersmith or or St George’s hospital.
Their services, as judged by mortality data, are safe … [But] that is a different argument from saying do we think in the future we could do better when children are born with a complex cardiac disease where treatment previously would not have been thought feasible?
Craig says things are already improving. “The number of people now surviving through to adulthood is vastly more than 20 years ago,” he said.
“The challenge now is thinking of this as a predominantly adult service to manage, because of survival rates. And we’re in the perfect position to do that. We see people transition through. There is a risk as a teenager, and frankly getting fed up with treatment plans and hospitals. And at that exact moment, they have to be taken away from the team they’ve known all their lives to a new adult hospital. Lots of US evidence suggests that people get lost to follow-up, and our setup enables that to be much rarer.”
Co-location is Gray and NHS England’s key argument:
If I were a parent sitting beside the bed with a child who needed other specialist input, I would feel much more comfortable knowing that it was two floors down.
“I would say, has he asked the patient or parents?” Craig responds. “Surgeons are timetabled to work at both hospitals, they have to be flexible but that is what doctors do.
“Gastroenterologists are here when we need them, surgeons are here when we need them. They can be here every half an hour, they can be here every day of the week. So it does become a bit emotional yes, because it’s like, ‘why don’t you get this?’ This feels like such a matter of an interpretation of standard, the paranoid among us think there’s something else going on.
“The number of people you need for a 1,000 bed hospital means it can be impersonal. You pick up the phone to talk to the labs here and you know who they are. Would it be better to build a brand new hospital with everything under one roof? Where’s the money to do that? And what’s the benefit? It’s the theoretical risk, which hasn’t happened, that the surgeon might not be there when we want him. What actually happens is one of his colleagues covers. Even in bigger hospitals, there’s no guarantee the paediatric surgeon is immediately available either. We have done this for decades with outcomes which are the envy of the world.”
That’s all from today’s liveblog. A huge thank you goes out to the staff and patients at Royal Brompton hospital, and to you of course for reading.
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Analysis: what does the future hold for under-threat hospital units?
So, as the Guardian’s day at Royal Brompton nears a close, where do we go from here? The argument is as heated as ever, on both sides.
Many other hospitals in England – and their respective campaigns – will follow Royal Brompton’s efforts to head off the threat to its children’s heart unit. Its argument, that many other types of care in the hospital would become unviable if the unit disappeared, resonates widely.
Doctors and NHS leaders may agree a slimmed down health service that concentrates expertise is the roadmap to follow. But the difficulty of allaying the fears of a sceptical public is considerable and, in some places, will prove unsurmountable.
Where centralisation does happen, experience suggests care and patient outcomes will improve. There is no reason to believe that the benefits of the centralisation of stroke and trauma services in London over the last decade – an estimated 100-150 lives a year saved by the former – will not be replicated elsewhere and with other types of care.
Tellingly, the Stroke Association’s chief executive, Juliet Bouverie, recently told the Observer that the number of stroke hospitals in England should be cut from 126 to between 75 and 100 in order to enhance patients’ chances of survival and recovery. Health charities’ backing for such changes should help persuade sceptics.
And if all this rationalisation doesn’t happen? Government concerns about political problems and fierce local opposition reduce the chances of these STP-driven closures happening. In this case, the likelihood is that care in acute units, such as A&E and maternity, will over time become less safe because already chronic understaffing will worsen just when need is increasing.
The likeliest scenario is that more A&E units will close or at least have their opening hours reduced, as in Chorley, Lancashire and Grantham, Lincolnshire – piecemeal rather than planned rationalisation. STPs are intended to avoid that. Apart from saving money they are intended to provide better, safer health services that the evidence suggests will give patients the best possible treatment around the clock. Some, but not all, will get the chance.
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'I get a cannula to get the medicine into me' - Finlay, 7
Finlay Wilkins, 7, is playing video games in the playroom after a day in the hospital school. He has been speaking to his classmates at his regular school on Skype. “They say they miss me,” he said.
Born with cystic fibrosis, he is treated on Rose ward, which specialises in heart and lung, meaning the services he has received since since he was a baby are also under threat. The treatment is almost second nature to him now.
“I get a cannula to get the medicine into me,” he said. “It doesn’t hurt, there’s a special cream. Also they give you the happy gas, that’s what I call it. It makes you laugh.”
His favourite subject is maths, but he doesn’t fancy a career in medicine. “I want to be an inventor, and teleport back to the past.”
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Readers' views: 'How can this be good for patients?'
Here are a few more views on this topic from our readers, submitted through this form. Two parents talk about how the Royal Brompton has helped their children.
Rhys Ifan, 33, from Surrey
Our daughter has been under the care of Royal Brompton hospital since she was born nearly two years ago with congenital heart disease. She underwent lifesaving open heart surgery when she was three days old. We have every faith in the hospital from the surgeons who have operated on her, through to the nurses, the play therapists, the nutritionists, physiotherapists and speech and language therapists, who have supported her recovery. The care she and we as a family received from the hospital has simply been world class.
We strongly disagree with the planned closer of cardiac services at the hospital. We have been presented with no evidence to suggest there are issues with the quality of care at Royal Brompton; congenital heart disease services are among the best in the country. It is very hard to see how the service we receive will be improved by sending us somewhere else. How can closing a large, well-established and well performing unit make any sense at all? How can this be good for patients?
Stacey Warner, 30, from New Malden, Surrey
My son has been a patient under the Brompton from nine days old and he is nearly three. Our family is so worried about possible closures as our son has a very rare and complex heart condition. My main concerns are that my son was refused from other leading hospitals, for treatment and surgeries he needed, to keep him with us. If we lose the Brompton then who will care for him? We were told my son wouldn’t make his birth and then one year he is nearly three without the Brompton that wouldn’t have been possible.
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'I don't see how the closure will mean better care'
Trudy Nickels will be at the front of the march to save Royal Brompton’s child heart unit on 18 March, followed by an anticipated 1,000 patients, families and friends and children banging tambourines.
Nickels is director of the hospital’s children’s charity – the Brompton Fountain – and her 10-year-old son was treated there for a complex heart condition that developed before birth.
“If I thought the closure would mean better care, perhaps we could understand it – it would be a wrench but we would have to do it,” she said. “But I don’t see how it can be. The doctors and surgeons here deal with complex procedures every day, patients get care from newborn to adulthood in the same hospital, and that’s what I want for my son.
As a charity, we provide things for patients which I just don’t think you see elsewhere: from antenatal classes for parents whose unborn child has just been diagnosed, so they can meet other parents, to bereavement events for children whose siblings have died, so they can meet other children like them.”
Nickels said her son was treated regularly by doctors at the nearby Chelsea and Westminster hospital, which has a formal partnership with Royal Brompton. One of the arguments NHS England has given for closing the Brompton’s heart unit is “co-location” – the desire for all hospital services to be available on the same site.
[My son] was treated by a dentist from Chelsea and Westminster when he needed to have teeth removed before surgery. The doctor came here to do check-ups, it was like they were from the same hospital. I don’t see why it matters that they are five minutes walk away in a different building.
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'The worst is when you can't do enough [to help]' - Clare Pheasant, sister
For 12 hours, starting at 7.30am, Sister Clare Pheasant is running Rose ward, where duties include supervising beds, checking blood and respiratory tests, booking surgery dates and discharging patients.
Discharging is a good part of the job, sometimes it can be patients you have known for years and sometimes, yes they might not being going straight home but they are getting closer.
Nurses can always find something to do to help, which is the best part of the job, she says. “Cups of tea – lots of them; giving a crying child a tissue; giving a parent a hug.” The worst is when you can’t do enough. “There are always going to be children who, at the end of the day, we can’t [help]. No one can.”
Nurses on the ward talk about potential closure, and the uncertainty is hard on a small team, Pheasant says. But life carries on. “We keep going. We are actually actively recruiting – every day when a patient is discharged there’s normally a new patient here within about an hour. We are constantly full and busy.”
Nearly a quarter of NHS trusts declared themselves unsafe since December, figures reveal
New NHS data has been released today, and the figures make for sobering reading: more than 60% of trusts have had to declare high-level alerts since December.
Almost one-quarter of these trusts (37) reported an ‘Opel 4’ alert, which means they were so overcrowded safety could not be assured. Another 93 reported Opel 3s, which indicated that they were under major pressure.
Sarah Marsh and Pamela Duncan crunch the numbers in the full story.
Explainer: what are the issues involved in the planned NHS closures?
There is agreement at the top levels of the NHS that an unprecedented centralisation of services needs to take place across England, for two main reasons.
First, the belief that quality of care will improve and lives will be saved; and second, that staff working in bigger teams, albeit in fewer places, will help overcome the serious and growing shortages in many NHS areas. The latter has been exacerbated by the Brexit vote and flatlining real-terms pay.
Many of the 44 STPs (if you don’t know what this means, see the 12.01pm post) involve reducing the number of A&E and maternity units, and also the number of hospitals providing acute stroke care, and even certain kinds of cancer treatment. These proposals have generated a huge outcry.
However, much of this radical thinking will almost certainly not lead to dramatic rationalisation on the ground, for two reasons:
1) Theresa May has told Simon Stevens privately that she does not want bad news about hospital unit closures on newspaper front pages. NHS England’s chief executive can’t ignore that. Jeremy Hunt, the health secretary, shares those fears, though is more open-minded to the claimed virtues of NHS reconfiguration.
2) The public’s deep, emotional attachment to the bricks and mortar of their local NHS – hospitals much more than GP surgeries – makes it difficult to push through such changes.
Most non-NHS staff are influenced most by emotion – “save our local hospital” – rather than data and evidence. Hospitals are where babies are born, operations are had, cancer care is delivered and, often, lives end. As such, they matter hugely. And that feeling prompts thousands of people to sign petitions, lobby MPs and attend protest marches.
For example, in 2010 controversial plans to radically reshape the role of the Whittington hospital, a small district general hospital in north London, were shelved as a result of such people power. Local MPs affected – including Jeremy Corbyn, Emily Thornberry and David Lammy – joined a 5,000-strong protest march and that was that. The proposals disappeared.
Six years on, it has to be said, the Whittington is still intact, has made improvements and is treating record numbers of patients, but is still facing questions about where it fits into the NHS landscape at a time when many hospital trusts, including those near it, are merging to become mega-trusts.
'Other parents know what you're going through'
Jack Gibson, 3, is running around the playroom, clutching his plastic toys and giggling. His chest is still bandaged from scheduled heart surgery, part of his treatment for the hole in his heart.
His mother, Jemma, is pleased to see him looking lively, though he is anxious to find his favourite pirate ship toy.
He had a couple of problems in surgery so he’ll be here for another five days at least while they monitor him. It’s our first time here, the staff on the intensive care were just amazing. Talking to other parents helps, they do know what you’re going through.
Across the room, one-year-old Freddie Nash is mesmerised by the pink and green lights in the soft play’s “hurricane tube”. He is here for a rigorous number of tests, having first been treated at just three months. Now he has been transferred to Royal Brompton, where mum Becky hopes they finally get a diagnosis.
“It’s even harder, not knowing what’s wrong with him,” she says. “Obviously I want to take him home soon as I can but more than that, I want to know what’s the answer. We were only supposed to be in for a night but now it looks like it will be a lot longer.”
Today is the first day Freddie is starting to act like a normal one-year-old, playing with his toy ambulance, and clapping his hands.
“He has been quite distressed; he’s had 15 blood tests and he was really, really upset by them,” she said. “He loves it in the playroom though, I think we’ll be here a lot.”
'125 operations per surgeon [per year] to maintain skill levels is necessary'
Both the Royal College of Surgeons and the professional body, the Society of Cardiothoracic Surgeons, support the new NHS standards that may lead to the closure of children’s heart surgery units such as Royal Brompton.
“We very strongly support the idea of reconfiguration,” said Graham Cooper, the society’s president and college board member. “Obviously the implementation of this is NHS England’s job.”
They back the standards. “It is clear that 125 operations per surgeon [per year] to maintain skill levels is necessary and we are also quite clear that it will be four surgeons ultimately in a unit by 2021, for on-call and providing a service when people are sick or on holiday.”
Surgeons are increasingly specialised, operating only on neonates under one month old, for instance, which means more are needed.
They support having other children’s services on the same site too. “To ensure children get the very best care, co-location is very important.”
But they are dismayed that it has taken 16 years to get this far. “Our members are very frustrated about the lack of progress with it. They see it as being important and the current limbo puts a lot of uncertainty in place for patients and families and all the staff working in cardiac surgery. We’d like to see it got on with and done.”
NHS England chief Simon Stevens: 'We do need capital. We’ve said that from the get-go'
Meanwhile, NHS England chief executive Simon Stevens has been speaking today at the annual summit of the health thinktank the Nuffield Trust. And will the NHS be getting more money in next week’s budget? No chance.
Tellingly, Stevens was not even asked if he thought more cash was likely. That’s because everyone in “the system” – as health service bosses refer to it – knows that it’s not going to happen and that it’s a waste of time lobbying, pleading or arguing for it publicly.
Why? Because of Theresa May’s oft-stated, though widely-disputed, view that the NHS is already getting more money than it asked for between now and 2020. And her belief – first disclosed by the Guardian last October – that the NHS can learn useful lessons from her time as home secretary in cutting police budgets and seeing crime falling at the same time.
Stevens publicly challenged both opinions in evidence to the Commons public accounts committee on 11 January.
However, since last year Stevens has instead repeatedly made the case for more money to prop up England’s ailing social care system and also extra cash for NHS capital spending.
Philip Hammond, the chancellor, looks likely to deliver on social care at least. Though there is growing speculation he will provide between £700m and £1bn of genuinely new government money in the budget.
But capital funding for the NHS? That’s money to build new premises and maintain existing ones and buy new equipment, such as scanners. That’s the pot of NHS funding that’s been raided by the health secretary Jeremy Hunt to the tune of £1.2bn this year, to help keep struggling hospitals going, amid the huge pressures they are under.
Another £1bn is expected to disappear again from that pot in the new financial year starting next month, just when Stevens’s bold plans to “transform” how the NHS works through STPs means NHS organisations need more money for capital than before, not less – to build, for example, new community health centres and the like as care is shifted out of hospitals.
On that, though, Stevens conceded defeat. “I’m not expecting the capital question to be resolved at this juncture,” Stevens told the 140 NHS bigwigs, doctors and policy wonks at the Nuffield Trust event. “The critical events on this are in November [when Hammond delivers his second autumn statement]. And this is a matter for the chancellor and the prime minister.”
But, he added: “We do need capital. We’ve said that from the get-go.”
In the playroom with 'the pink doctors'
Maxine Ovens and her team have enviable job titles: they are play specialists. Their domain is the soft pastel-lit playroom on the ward, with adult-sized Darth Vader models, flashing toy ambulances, paints and a soft play pen.
They are recognisable across the ward in their pink polo shirts – one child calls them “the pink doctors”. In the playroom, medical talk is banned, it’s an escape for children and parents.
“For a child, even a simple procedure can be very invasive and distressing: putting on a gown, going under anaesthetic, waking up with tubes, it’s distressing,” she said. “Our jobs is to help children get through their procedures, distract them so nurses can take blood tests, and help their recovery,”
Today, toddlers are painting pictures of pigs, or building toy houses sat on their parents’ knees, with few taking any note of their portable oxygen or bandaged hands to protect the tubes. There will be magicians, musicians and beat boxing sessions here.
“Whatever a kid wants, if they want a party, and if they’re here for a long time, we will make it happen for them,” says Maxine. She is planning to be on the march against the closures, but until then she says she does not want to let the threat distract her.
“I can’t imagine how anyone could ever come in here and think this place should close. I can’t understand it. Whatever they decide, I don’t have power over that. My power is in here, and meanwhile, there are children who need our help.”
The Kidderminster case study: what happens when an MP appears to oppose the local NHS
As some of the stories in Sarah and Jessica’s reporting make clear, there’s a weighty emotional argument against closing any hospital service. Royal Brompton says its case is far from merely emotional, and enlists powerful, rational arguments on their side; but there are powerful, rational arguments on the other side, too.
So how should the people who genuinely believe that it is in patients’ best interests to close the unit make their case?
If history is any guide, the answer is: with extreme difficulty. In January, the Observer’s chief leader writer, Sonia Sodha, made a documentary for BBC Radio 4 that offered the view that public affection for the NHS was holding back progress. One of the people she spoke to was David Lock, a Labour MP who backed controversial attempts to move some services from Kidderminster general hospital in the late 1990s.
Lock told Sodha he supported the changes because “the results for my constituents under the existing arrangements were appalling”. But the public took a different view, and Lock was insulted and screamed at in public, he says.
In 2001 he lost his seat to Richard Taylor, a former consultant physician at Kidderminster general who campaigned on restoring its A&E – even though the data showed that since the changes the death rates for high risk vascular surgery had dropped.
Lock says: “I had numerous conversations with numerous individuals, all of whom were persuaded on the head case – and then they would go away and talk to somebody else about how appalling it is, and the heart would take over again.”
You can listen to Sonia’s documentary here.
Readers' views: 'It is necessary to close services sometimes'
Here are a few more responses from our readers on the topic of NHS hospital closures and cuts. You can add more here.
Anonymous nurse, 40, from south-west England
I worked for more than 10 years in the same trust which has closed beds. Community hospitals around it have also closed and services have been centralised on a background of different parties and health ministers. Has it made any difference? We always struggled with staff retention as not many people are up for the job. Regardless of agencies filling the gaps there are not enough qualified staff. There are always escalation beds open (as we are usually running above the 85% capacity). We are always fire fighting which can’t be productive in health service. It means unpredictable fluctuations are not catered for. The plan to centralise is going to fail if there is no financial support and a plan. The problem is that planning never exceeds more than two to three years. Where is the new system getting the staff from? Where is the training? If you’re mechanic is not trained properly your engine will fail eventually.
Janine Brown Jones, NHS operational care staff
It is necessary to close services sometimes. We know that to maintain the best care and most importantly safety, specialities have to have a critical mass of activity to ensure properly trained and experienced staff are delivering the care. Too little activity means poor skills.
Stroke services for instance – it has been shown that traveling a little further to a specialist stroke unit leads to better outcomes than admission to a local general unit. Maternity services also need to have at least 2,000 births a year to be viable, but more to ensure better obstetric care. But in this case it’s important to remember that the majority of births don’t need obstetric care. In fact for a “normal” labour, midwifery led care has better outcomes. Don’t get me wrong, I’m in grief about what’s happening in our NHS right now, but I can’t jump on the bandwagon of “we must keep all services open everywhere”.
In my career (started as a nurse, worked my way up in operational care) I was involved in difficult decisions about centralising services, but always in the interests of improving outcomes for patients and with real public involvement and consultation.
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'Babies look so fragile, but they are tough, so so tough'
Mason Jay Nastor underwent his first open heart surgery when he was just six days old. His mother Rupinder, 36, was 20 weeks pregnant when she got the diagnosis that her baby son would have hypoplastic left heart syndrome, and that he would be spending his first months in the Royal Brompton.
She gave birth at Chelsea and Westminster hospital, and the family were transferred immediately over.
“Your brain is going at 100 miles an hour, people are telling you what to expect and it is hard to process,” her husband Benson, 27, said. “I don’t know much about the medical terminology, but having it explained, coming here before he was born, that was such a help. At least you can imagine the place you’re going to be. He’s a Brompton baby,” Rupinder said.
Now just over two weeks old, Mason’s chest is still open and bandaged from the surgery. The new parents had cuddles before he went under, but now all they can do is watch, and stroke his eyelids.
“He didn’t open his eyes after he was born,” Benson said. “We really wanted him to look at us before he went into surgery and just the day before he opened them. We were so grateful for that, you look into his eyes, you can see into their soul. Babies look so fragile, but they are tough, so so tough.”
If recovery goes well, Mason will need surgery again when he is two to four months old, and again when he is two years old. The parents are keeping their fingers crossed that the unit will still be open for them to return to. “I can’t understand at all why they would be thinking of closing this place.”
What are sustainability and transformation plans (STPs)?
It is impossible to talk about the closure of NHS services without quickly hearing the initials STP. Sustainability and transformation plans are the controversial engine by which the NHS is trying to manage its costs and build a service with a stable future by 2020.
It is important to note the critical difference from what’s going on at Royal Brompton; STPs are explicitly related to making the NHS more financially sustainable and making the £22bn of necessary cuts. The mooted changes at Royal Brompton and elsewhere are, the NHS says, an argument about the best clinical outcome for patients.
If STP doesn’t mean a lot to you, read Denis Campbell’s excellent explanatory piece about the plans here.
The case for closure: 'We need to go for a world-class service'
When the closure of some children’s heart surgery units was first mooted, in the wake of the unnecessary deaths of babies in Bristol, the rationale was safety.
Today, every unit is safe, says Prof Huon Gray, the NHS national clinical director for heart disease, who argues that the closures at Brompton and in Leicester are necessary because the ambition is “to future-proof the service” by making it as good as it can be.
“We need to go for a world-class service, as opposed to one that is satisfactory or adequate.”
NHS surgeons need to be operating regularly to keep up their skills, as ever more complex operations on babies become possible. By 2021, says NHS England, there must be a minimum of four cardiac surgeons in a unit, to allow for a proper on-call rota. They must perform between them at least 500 operations a year, which is about three each every week. That is a minimum, says Gray.
Also important is having all the support services on the same hospital site. Many babies born with heart defects also have other health problems. It has to be possible to diagnose and treat the whole child in one place, Gray argues.
The Royal College of Paediatrics and Child Health as well as the Royal College of Surgery agree co-location is key. “If I were a parent sitting beside the bed with a child who needed other specialist input, I would feel much more comfortable knowing that it was two floors down,” Gray says.
The standards that set this out have been discussed and consulted on since 2013. Everybody who could have an interest, from patients to families to nursing staff and doctors and charities has had their say. “I find it difficult to know how much more one could do to involve everyone who has an interest in the topic,” said Gray.
He understands, he says, the upset at the Brompton and in Leicester. “Their services, as judged by mortality data, are safe.” But, he says, “that is a different argument from saying do we think in the future we could do better when children are born with a complex cardiac disease where treatment previously would not have been thought feasible.”
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War-gaming emergencies with dummies that bleed
Dr Margarita Burmester, a paediatric intensive care consultant, specialises in plastic patients.
She and a team of staff from across departments, from surgeons to doctors, anaesthetists and healthcare assistants have developed a unique emergency simulation, with life-like patient dummies who bleed when surgeons open their chests.
The simulation, called Sprint, runs once a week, role-playing emergency scenarios to help doctors and nurses identify the pitfalls for when emergencies occur for real.
“Often the problem in emergency isn’t the skills, it’s the system,” she says. Filming a healthcare assistant going through the rigmarole of collecting blood from the a lab, while a dummy patient was experience catastrophic haemorrhaging, meant doctors could see for the first time how the process worked – and how slow it could be. “Now we have cut down the process from four minutes to eight seconds – that can be absolutely crucial.” Working across departments has also been key.
“This is an intense environment, it is common for emergency scenarios to lead to conflict. And in a real emergency, no one has time to think afterwards how this could be done better,” she says. “This gives you time for you to do just that.”
The simulation has been clinically proven to improve patient safety, and Burmester’s close-knit team now educate other medical staff nationally. She is extremely worried about the implications for the system, developed over a decade, if the unit was to close.
This kind of simulation can take three to five years to become part of the culture, once staff have bought into the idea. Culture in places can be very different and there can be resistant. Yes if the unit closed I could go elsewhere, but this team wouldn’t be together any more, and it would take years to replicate what we have built here.
The Royal Brompton views the threat to decommission its heart services with mystification, because it rests on one failed standard – “co-location” – out of 470 that does meet.
This standard requires that certain children’s services are all in the same place. But the Royal Brompton says that it works seamlessly with the nearby Chelsea and Westminster for these linked services, and that there is no evidence that co-location ensures better performance.
It also says that the data shows it’s among the biggest, best and safest congenital heart disease services in the world – and that the changes wouldn’t improve standards.
Families, patients and doctors share the same strong view. Parents are supremely loyal – like Steve Marwood, who credits Brompton’s paediatric intensive care unit with saving his daughter Honor. He fears that her life will be more difficult if outpatient services close and is trying to raise £40,000 for the hospital. On March 18, there’ll be a public demo against the plans.
And many supporters share the view of the pioneering surgeon Prof Sir Magdi Yacoub:
It hurts me a lot to see centres of excellence being shut for convenience, for planning purposes, because it doesn’t fit on a piece of paper somewhere in the ministry. When you have a tradition of excellence in one place, please don’t destroy it. It’s very sad to see so-called planners wanting to have ‘optimised services’, saying they don’t like this here and they might put it there.
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Child heart units: the picture across England
Royal Brompton isn’t the only hospital facing a loss of services. After some 200 standards governing care were set out in 2013, hospitals providing heart surgery were assessed across the country. NHS England decided that four did not meet the standards: Royal Brompton in London; the Glenfield hospital in Leicester; Newcastle; and Manchester, which only does adult surgery.
Newcastle has been given more time to meet the criteria because of the specialised work it carries out. The other three units are slated to close under proposals published in February. The University Hospitals of Leicester NHS trust missed two standards – it carried out 326 operations in 2015-16, when the minimum number to ensure high quality was 375, and like Royal Brompton, it did not have all the children’s services it needed on one site.
Neither hospital is going quietly. Just as Royal Brompton is organising a demonstration in a fortnight’s time, a thousand people were reported as marching for the Glenfield heart unit in Leicester, and nearly 25,000 have signed a petition calling for it to be saved.
You can read our story from July last year about the announcement of plans to close the units here.
'For a boy with only one working lung he’s amazing'
Two-year-old Ieuan from Little Hampton has been treated for a collapsed lung since he was 7 months old. He is in hospital to assess the problem and if the doctors are not happy with his progress then he may have a lobectomy.
“He’s like a little tornado,” says his mother, Lisa Barnard. “For a boy with only one working lung he’s amazing. Absolutely amazing. He’s going into theatre soon and I can go for a coffee!”
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We have been hearing from our readers on the question of whether hospital closures are ever necessary to improve patient care. Lots of you have been sending over your stories. Here are two interesting perspectives. Add your views here.
Anonymous, 55, NHS operating theatre technician
There is a case for concentrating some services, much as I hate to admit it. This is especially true in areas of the country that have quite a few hospitals close to each other. From my front door, there are four hospitals within 10 miles, not to mention a few smaller hospitals with minor injury units.
Having said that nobody wants their local hospital downgraded and in more rural areas it’s a different matter. My local A&E (which is under threat) is also currently treating patients in corridors due to high demand so it’s difficult to see how it could close.
Kirsty Davies-Duddy, assistant headteacher, 36, from Surrey
Our son, now aged three, had emergency open heart surgery at The Royal Brompton at 13 weeks old. The level of expertise, knowledge, care and dedication shown by the staff is incredible. The comfort we take from knowing that if our son needs more surgery, it will be undertaken at the Royal Brompton can not be taken for granted. Knowing that the hospital that saved our son’s life (and could potentially save it again) could close is unsettling.
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'These are not easy decisions' - Liz Biggart, senior nurse
About 60% of cardiac lesions are diagnosed before birth at 20 weeks. That’s when the standard ultrasound scan is done. If the baby is going to need immediate surgery or other intervention, they arrange for the birth to take place at the nearby Chelsea and Westminster hospital.
“The intensivists, cardiologists and nurses know when a baby is due,” Biggart says. “We can be prepared for the arrival and ensure the baby is in the best possible condition before surgery.”
If the baby is premature - maybe born as early as 26 weeks - she or he will have immature lungs and organs as well as a heart defect. Difficult decisions have to be made by multi-disciplinary teams of people as to whether they need to do an operation immediately or can wait until the baby is bigger and less fragile.
“These are not easy decisions, not glibly made,” Biggart says. “Parents have to be told that the miraculous operations surgeons can do in childhood will not always be a cure. Children with heart disease will get surgery in their middle years and will not live a long life. But they will live good quality lives,” she says.
- For more vignettes from staff and patients at the Royal Brompton, head over to our wonderful photo essay.
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Get involved in the debate about the closure of NHS services
As we’ve seen, the arguments being played out at Royal Brompton aren’t happening in a vacuum: a similar debate is going on all over the country. As part of our coverage, we want to hear from you.
Is your local hospital affected? What are your concerns? Can you understand the rationale behind the plans? Do you think you or your child could have received better care, or do you worry about the loss of local services? If you work at a hospital, are you worried about the plans, or do you believe they will raise standards?
Tell us about your experiences, and we’ll post a selection of your stories throughout the day.
Consultant cardiologist Dr Jan Till
Dr Jan Till started her career as a junior at Royal Brompton. Her specialty is heart rhythms.
“My colleagues are the plumbers and I’m the electrician,” she says. One of her first patients was a three-year-old girl whose older brother had died unexpectedly.
Obviously, the parents wanted to understand why he had died, and ask if there was a possibility if it could happen again. And it became apparent that there was something wrong with her heart rhythm. I have taken care of her since she was three, and she is now in her thirties. She has children of her own, I still see her, and we now know she had a very rare gene so now I manage her own children too.
Taking care of a patient over 30 years you become almost part of that family. Her mother very sadly died recently and she wrote to me saying she knew I would take care of her family. You go on a journey together, at times it can be very distressing. People are in hell when their child is sick, but there are moments of joy too, when a treatment works, when they are improving. There was another little boy who I’ve looked after since he was seven and he also has children of his own now, and his mother has a picture of him with me in Rose ward when he was a small boy, in a frame in their house.
With the hospital unit facing closure, Till says the changes will mean a relationship with a patient who needs treatment from early childhood to becoming parents themselves, spanning decades, will no longer be possible.
This vertical care works so well, the relationship you have with all the family members. It means so much to patients that they don’t have to transfer to a new hospital or a new team when they get older. I think a lot of that got lost in the NHS England proposals. It doesn’t make sense to patients and it doesn’t make sense to doctors.
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The Guardian has been reporting on the Royal Brompton’s fight to keep its children’s heart surgery unit open for years. Here’s a piece from 2011, when the hospital won a high court ruling that the planned closure was unlawful.
This decision is a key part of why Jeremy Hunt called off the “Safe and Sustainable” plan, saying that it based on a “flawed analysis”. Even then, the reorganisation had already been under discussion for a decade.
The lessons of Bristol Royal Infirmary's heart scandal
Examine the sources of the pressure on Royal Brompton’s peadiatric heart unit, and eventually you will get back to Bristol Royal Infirmary (BRI), and the death of 16 month-old Joshua Loveday in January 1995.
Joshua had gone into theatre for an operation to “switch” the major arteries in his heart, which had grown the wrong way round.
Joshua’s death came after Dr Stephen Bolsin, a consultant anaesthetist who had compiled data over several years on the outcomes of congenital heart surgery at the BRI, had warned that surgeon Janardan Dhasmana was not good enough at the procedure. Too many of his patients had died.
Joshua’s death finally triggered an external inquiry into the results. When Dhasmena was suspended from surgery and two other doctors were struck off, parents laid miniature black coffins outside the General Medical Council building to represent the babies who need not have died.
The report eventually found that for years, mortality at the BRI for children under one was roughly double that of elsewhere.
Since then, for the last 16 years, the NHS has been trying to reform children’s heart surgery, with the underlying principle being the need to have more surgeons in fewer hospitals, operating on more children so that they become ever more skilled at what they are doing.
A massive exercise involving the primary care trusts, called “Safe and Sustainable”, was launched in 2008. It foundered in 2013 following a furore in Leeds and legal challenges from the Royal Brompton and Leicester hospitals.
Out of 10 hospitals providing child heart surgery, three were said not to meet the standards. They were the Royal Brompton, Leicester and Newcastle. A public consultation on the Brompton’s future runs until 5 June. After that, congenital heart disease services may have to close.
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'We never say ‘quiet night’ – it’s a jinx – but it was relatively calm'
In the staff room after the morning ward round in Royal Brompton’s paediatric intensive care unit (Picu), home to the most severely ill children, deputy sister Eleri Evans is negotiating bed space with Claire Taylor, her counterpart on Rose ward. Children can be moved to Rose ward when they are stable or recovering, though it shares a high-dependency unit with the Picu.
Evans is in the fortunate position not to need any extra beds on Rose ward; normally after a night shift they are in need of around five more beds. “We never say ‘quiet night’ – it’s a jinx – but it was relatively calm,” laughs Laura Ettery, the sister on the high-dependency unit.
The nurses are looking after 15 children in intensive care, and 31 of the 32 beds are full on Rose ward too. That bed will be filled later today, but others have recovered and gone home overnight.
“One of the children needed a lot of of intensive treatment for his asthma, they were here for two weeks but now they’re at home, making a good recovery,” one of the sisters explains.
Unlike an emergency ward, staff can spend weeks or even years with patients and families – including months when they might wait for care packages to be available from local trusts.
Nurses speak with familiar fondness of their patients as they give updates. Deputy matron Sarah MacCathey-Morragh says children with complex needs have been in the ward for up to two years.
“We had one little boy who had a cardiac defect and a tracheostomy, who was here for two years, and he was absolutely part of the family. He came here as a newborn and he left as a toddler, talking and trying to walk. But it’s a very expensive package of support you need at home, from a ventilator, to nursing staff, to training parents how to look after him. But he’s at home now, doing really really well.”
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Meanwhile today, Simon Stevens, the chief executive of NHS England, is making a speech at the Nuffield Trust’s health policy summit – and talking about making it harder for hospitals to reduce their supply of beds. His intervention comes after the NHS’s winter crisis, which was widely blamed on a 20% fall in beds available over the last 10 years.
Our health policy editor, Denis Campbell, points out that this may not sit easily with the scheme laid out under NHS sustainability and transformation plans (STPs):
It is unclear what the impact of the new rules will have on the STPs developed recently by NHS chiefs in 44 areas of England. Many of the plans envisage a further loss of hospital beds by 2020-21 in efforts to help the NHS save £22bn. Also, the conditions will only apply to “significant bed closures”, which may not stop hospitals reducing their numbers gradually, a few at a time.
You can read Denis’s story previewing Stevens’ speech here.
So how do you start telling the story of a hospital service from the point of view of its patients? The Guardian’s health editor, Sarah Boseley, spent some time at Royal Brompton with the photographer David Levene, and we’ll be sharing some of the images and stories they produced for their photo essay over the course of the day.
Meet, to begin with, Ekam and his mother Kawaljit:
Kawaljit Kaur spends all day, every day, at the bedside of her first and only child, Ekam, who is five months and 19 days old, she says, and was born with a hole in his heart. “I play with him. He holds my hand. We talk to each other and he gives me a smile,” she says. Ekam, sleeping flat on his back with his face hidden by tubes, flails his limbs in the air. “He is very lively,” says a nurse.
After work, Kaur’s husband joins her before they go home for the night. And in the morning she is back. “On Saturday and Sunday we are both sitting here, watching what he is doing,” she says.
You can see more of the photo essay here:
Why are we liveblogging from the Royal Brompton?
Can it ever be justified to close a hospital, or reduce its services – even when that hospital is, by any measure, good at what it does? Welcome to the Guardian’s liveblog from Royal Brompton hospital in south-west London, which we hope will help shed some light on this vexed question.
A year on from our month-long This is the NHS series, which told the story of the health service through the eyes of its doctors, nurses, administrators and patients, we’re going back in: specifically, this time, reporting on Royal Brompton’s paediatric heart services, which the NHS has announced that it intends to stop funding.
The NHS says the change is not to save money, but to improve standards. As we’ll see, Royal Brompton fiercely disputes this. It says the official data demonstrates its congenital heart disease unit is among the best in the country. Of course, we will not be able to resolve the disagreement today, but by reporting live from the hospital – talking to the experts, and recounting the stories of doctors, nurses and patients – we seek to build a better sense of what is at stake here, and across the NHS.
So what’s in store? Guardian reporter Jessica Elgot is at Royal Brompton already, sitting in on the nurses’ regular morning handover meeting. She’ll be reporting throughout the day accompanied by photographer Alicia Canter, aiming to give you a sense of how the hospital functions and what both staff and patients make of the debate about the heart unit’s planned closure.
We’ll also be publishing extracts from David Levene and Sarah Boseley’s superb photo essay from the hospital; our health policy editor, Denis Campbell, will be providing expert analysis; we’ll be speaking to policymakers about whether a change like this really is necessary; and we’ll be asking you to tell us about your experiences.
You can stick with us for the full shift on the wards, or dip in and out like an out-patient. But don’t forget to tell us what you want to know in the comments below.
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