The Children’s Heart Federation has been following the campaigns supporting children’s heart care at units around the country with respect and admiration for the passion, commitment and organisational skills of the parents, combined with a deep concern that in the rising wave of support for ‘Save Our Surgery’ lobbying, important issues are being drowned out.

Over the last two years of the national review (Safe and Sustainable Children’s Congenital Heart Services), we have heard the following views expressed many times across the country: “It’s disgusting they should even think of closing any units,” and “They should be ashamed to be slashing services for the sickest children to save money.”

These views, based on misinformation and gut instinct, fuelled by fear, have been played on by some doctors, nurses and managers across the country. It seems that while the majority of clinicians recognise that the direction of the review is absolutely right in theory, when it comes to ‘doing the right thing’, some are prepared to put the defence of their own workplace and jobs in front of the safety of heart children nationwide.

All the paediatric cardiac units sent representatives to a summit in 2006 and signed up to the principles on which the current review is based, which came from recommendations after the Bristol Baby Tragedy. The shared view of clinicians, managers and parents was to push ahead with the changes, fully aware that some units would probably have to stop doing surgery. All parties recognised that if we leave the children’s heart service unreformed, children will die unnecessarily, as they did in Bristol in the 1980s. Recent deaths in Oxford have shown these fears were totally justified. For clinicians and managers to ignore the urgent need for change now and feed anxious parents lines about the dire consequences of change, in some cases blatantly manipulating the truth, is effectively using heart families as a human shield for their own jobs, which is unprofessional and unethical.

As part of the current review, the professional bodies for surgeons, cardiologists, nurses, intensive care specialists, as well as CHF, which represents the interests of heart families whether or not they are aligned to a particular campaign, have signed up to a rigorous set of national standards for children’s heart care that, when implemented, should raise the overall standard of surgery, increase cardiology services and reduce waiting times and cancelled operations. With scaremongering about units ‘closing’, which is not part of the proposals, some clinicians and managers are diverting attention from the significant improvements this review can deliver. This is not to deny that families whose children have the most complex conditions need to be at the centre of detailed and sensitive planning to meet their ongoing needs. When emotions are highly charged, those careful and constructive discussions cannot take place, leaving many parents feeling that no one is listening and their family’s needs are being ignored.

The logic of applying the standards does not fit neatly into a soundbite and modern medical best practice can be counter-intuitive. It cuts across our instincts to hear that it is indeed safe to transport critically ill children to surgical centres in properly equipped vehicles with highly trained staff. Parents say they “know” their child would have died if they had been transported to another heart centre. Families have knowledge no other group brings to the planning of a health service – expertise by experience about their child – and they must be major players in the design of services alongside all the other experts, including those who have detailed specialist medical knowledge about transporting very sick children.

The problem for families in Leeds, just as in Southampton, Leicester, London, Newcastle and Oxford is that this review has to take a national perspective; it cannot focus on the needs of one area to the exclusion of all the rest. There are hard choices in many areas, for example, if Leeds keeps surgery, heart transplantation will move from Newcastle and a very special kind of life support will move from Newcastle and Leicester. People who take the national view are not the enemy, as it can seem to those who feel embattled. Their responsibility is to look at the bigger picture for the good of children wherever they live.

In many cases, the information available to parents – and by extension those who support them in their local campaign – is very partial. At a national level, clinicians, managers and national family support groups, like CHF, are aware that there is a significant variation between surgical units in the quality of life experienced by children who have undergone surgery. At the moment only death rates are published (https://bit.ly/2KrPC12) but senior consultants are aware that this is a crude measurement and are trying to find ways of accurately measuring and recording quality of life data, which will show much more clearly how effectively a unit is treating children. Where units operate beyond their competence in a particular procedure, children can die and suffer harm, sometimes through the need to conduct more operations than would be necessary in a centre more expert in that technique. The standards around scrutinising performance, transferring skills and supporting the development of new techniques, which are integral to this review, should eliminate the life threatening ‘dabbling’ in challenging procedures that has been a feature across the UK children’s heart care network up until now.

The bottom line is that to drive up standards everywhere you have to concentrate surgery into fewer units with larger teams of surgeons. Contrary to the alarmist myths circulating, no centre needs to close, if the managers and clinicians who prepared their business cases for this review were competent and honest when they did so. And this is not a cost cutting exercise – it will certainly not be cheaper – the whole process is driven by a desire to preserve and protect children’s lives.

Making these changes requires nerve – twice in the past 20 years, politicians have pulled back, presumably from fear of a backlash from the public. As Oxford shows us, and information fed to CHF from across the country, the children’s heart care system is not as safe as it could be today and is not sustainable into the future. The families of children who have died or been injured through poorly delivered treatment rarely come forward – they have a very quiet voice indeed – but surely their whisper demands to be heard?

The petitions in support of several centres are an amazing demonstration of public support for highly valued hospitals and for local heart families. The desire to protect, seen in these campaigns, lies at the heart of the current review, which has to work on a national scale to embrace all our heart children. The children’s heart care system is a work in progress – to be properly constructed it needs honest input from all those directly affected, whether hospital staff describing the impacts on other services or parents highlighting the needs of their children. CHF urges everyone with a concern in these matters to dig beneath the soundbites, respond to the consultation and, as you do so, call to mind those quietest voices.

ENDS