Dr Ian Balfour-Lynn – consultant in paediatric respiratory medicine – on behalf of the Paediatric Respiratory Unit

At the moment, amongst many other activities, the paediatric respiratory unit at Royal Brompton Hospital:

• Has more consultants in children’s chest medicine than any other unit in the UK
• Has the largest children’s CF unit in Europe (and the only bigger one is our adult service)
• Is one of only three units in the country with the facilities to diagnose primary ciliary dyskinesia (PCD), a condition that causes severe lung damage if left untreated
• Looks after more than 150 children who rely on machines to help them breathe for some or all of the time
• Receives referrals for extremely severe asthma from all over the country and beyond into Europe
• Is academically active
• Is part of research projects funded by grants totalling several million pounds

We are proud of what we achieve, and prouder still of the children and families who come to us for care.

So why does the loss of cardiac surgery matter? The main impact for us would be the loss of PICU and following that the loss of paediatric anaesthesia services.

A number of our children are so sick that they need intensive care treatment. So, if we no longer have a PICU, they would have to be moved to another hospital; never a good thing for a very sick child.

We do many procedures that require intensive care afterwards, and sometimes our patients need to spend time on a ventilator in PICU while they recover. Again, these procedures would have to be done in a different hospital. Additionally, sometimes we can only go ahead with an operation or a bronchoscopy knowing there is a PICU bed available, even though we don’t always have to use it.

We do other important procedures, such as putting in chest drains and looking inside the lungs with a bronchoscope, under a general anaesthesia as we feel this is safest and kindest for the children. Some centres do them under sedation instead. Without our skilled anaesthetists, these procedures could not take place at Royal Brompton.

We do more bronchoscopies in the UK than any other unit and run a training course every other year. Without the ability to do bronchoscopies, our unit simply could not function as a specialist respiratory unit so we would have to move the whole service. This would be a serious problem for the 1200 patients we care for currently.

There is no indication in the Safe and Sustainable report where these patients would go, and certainly there is no other unit in London, which has the capacity – either space or staff – to look after them at the moment.

All of the families we have spoken to are horrified by the prospect of going elsewhere. They are happy to travel to see us, and our consultants spend many hours travelling to other hospitals to do clinics nearer to the children to minimise their travel. Surely ‘patient choice’ must meaning something.

Read about Dr Balfour-Lynn

Professor Andrew Bush – professor of paediatric respirology

The idea of removing children’s heart surgery from Royal Brompton concerns me a great deal. If surgery goes, then anaesthesia and intensive care for children will also go. We will be completely unable to investigate children properly. For example, we won’t be able to carry out a bronchoscopy and, in effect, we will be unable to look after any sick child.

This applies equally to children with severe asthma, for which we have referrals from all over England. And, to children with empyema, cystic fibrosis, interstitial lung disease and technology-dependent children. What will happen to them?

My patients have come to me repeatedly since the Safe and Sustainable recommendations were announced and, it seems to me, they have a far greater level of understanding of their impact than some of the people who made the recommendations in the first place.

I believe that the London centres should collaborate, not work separately or against each other. There is a better way of doing this, but it must be thought through more thoroughly.

Read about Professor Bush

Dr Julene Carvalho – paediatric cardiologist

I specialise in fetal congenital heart disease (f-CHD) and I am passionate about my work.

I am proud of what Royal Brompton’s Fetal Cardiology Service has to offer the many families of children with f-CHD. I have seen many families through one pregnancy or more and know the importance of the multidisciplinary network we have developed in London by working in close collaboration with obstetricians, sonographers, midwives, paediatricians, geneticists, clinical psychologists and other professionals. This team has built its strengths over many years.

Our care for children with CHD is often conceived during pregnancy when the diagnosis is made antenatally. As the fetus grows we get to know their families and prepare them for the arrival of their ‘heart baby’.

At birth, we deliver specialist care to the newborn. Throughout their childhood our high-quality services see our toddlers and children into adolescence, and the same level of care and expertise sustains them as they grow into adults with CHD.

When these ACHD patients, or their partners, become pregnant, Royal Brompton closes the circle by providing specialist cardiology assessment of their unborn children, as early as 13 weeks of gestation.

Our model of care has proved safe, and has been sustained, over many years.

I feel strongly that this is one of the many aspects of care for children with heart defects at Royal Brompton that has not been given the appropriate emphasis in the recent Safe and Sustainable review.

Read about Dr Carvalho

Dr Ajay Desai – paediatric intesivist

My patients are children with heart and lung problems, who are extremely unwell. They range from newborn to teenagers and sometimes even young adults if they need to be in PICU because of their co-morbidities.

My team and I at Royal Brompton (and paediatric teams at referring hospitals) often have the advantage of knowing our patients even before they are born, because we routinely discuss antenatal cases at our weekly multidisciplinary meetings. Therefore, we are well prepared when they are born with a serious heart condition.

I believe this transforms the level of care these patients receive to the highest level. This can be in the form of antenatal interventions, timing and mode of delivery, stabilisation soon after birth, liaising with our intensive care and cardiology teams as well as transport teams for a quick and safe transfer.

Following initial management, these children continue to get quality care as they grow into adulthood. The transfer of care is smooth and efficient. Our patients feel safe and reassured as they don’t have to keep moving from hospital to hospital to be looked after.

The Safe and Sustainable process, I believe, is fundamentally flawed, failing to take into account evidence against the proposed changes, not least views of patients and parents cared for at the Royal Brompton.

I believe all three centres in London should continue to exist as they provide different models of care. It is much better to have combination of models that are working well (FACT) rather than change it to a singular model and hope things will improve (HYPOTHESIS).

Dr Simon Finney – consultant in adult intensive care and anaesthesia

As a doctor who cares only for adult patients, it might be expected that the outcome of the Safe and Sustainable review has little impact upon me.

This is incorrect.

I rely on the breadth and richness of clinical knowledge, skills, and experience at Royal Brompton to help me care for my patients. Cardiovascular disease is not defined solely by age – more the prevailing anatomy and physiology. Comprehensive care of any patient, child or adult, may need skills found outside traditional groupings of doctors. For example, closure of an ischaemic ventricular septal defect in an adult may be best undertaken by a paediatric cardiologist for whom similar procedures are routine. Alternatively, a child with a coronary artery anomaly may be best assisted by a surgeon with a primarily adult practice that focuses on coronary artery disease.

Moreover, during the winters of 2009 and 2010, the adult intensive care unit provided a national ECMO service for patients with severe pandemic H1N1 influenza. The excellent outcomes were, in part, dependent on the skills gained from paediatric clinical perfusion and paediatric ECMO.

All these synergies between departments will be lost if the paediatric cardiac surgery unit is closed. This will be detrimental to adult patients.

I also feel obliged to comment on a process that I am concerned will be detrimental to patients other than my own, namely children with heart disease.

While doctors, nurses and therapists can move geographically, I believe the results produced by a team are more than their collective skills. The bricks and mortar matter – they define an organisational culture that focuses on governance and quality, and aspires to achieve the best outcomes when judged nationally and internationally. I believe Safe and Sustainable places too much emphasis on the number of cases performed each year (which Royal Brompton achieves) and focuses less on other equally valuable considerations such as organisational culture, collective professionalism, and the desire to train the next generation of doctors and nurses.

Cardiac services should be flexible. The care of patients transitioning between paediatric and adult services need not occur at a specific age. Individual patients differ as to when their transition should occur; early or late, quickly or slowly. The co-location of adult and paediatric services facilitates doctors, nurses and therapists in caring jointly for each patient during transition.

I am also concerned about the rigour of the process. The decisions reached by Safe and Sustainable will influence clinical practice and patient outcomes. Therefore, the methodology, the analysis, and the publicity should be undertaken and independently reviewed to the same scientific, ethical and publication standards we would expect of a clinical trial. For example, previously defined and publicised methodology, independent review, and statistical robustness.

If I were making the decision, I would maintain all three centres across London believing this maximises patient choice and acknowledges all three centres provide excellent care. The centres should be mandated to act collaboratively to share experience, data, undertake research, and provide rapid access for patients.

Read about Dr Finney

Dr Gillian Halley – paediatric consultant

Improving lives and saving lives. That should be the cornerstone of any decision that affects a child with a serious lifelong or life-limiting condition.

Those of us who work on the frontline with critically ill children are advocates for our patients and we demand the best possible care for them.

Our surgeons carry out more operations on children and adults with congenital heart disease than any other centre in this country.

We are a truly national centre and we have a worldwide reputation for clinical care, research and education.

All of this is under threat because of the recommendations in the Safe and Sustainable review of children’s congenital heart service in England.

Is this safe?

We don’t think so. There is no evidence to say that dismantling a very large and successful service can be done while retaining the skills of the teams within the institution, and there is certainly no reassurance that this can be done without causing harm to our patients.

What does this mean for the Royal Brompton Hospital?

Decades of expertise and dedication into improving the lives of children and adults with serious heart and lung disease will be dismantled.

What does this mean for our patients?

I have serious concerns that children will ‘fall through the cracks’. From my point of view, that is not good enough.

If I believed this process had been driven by a desire to improve healthcare for all patients I would fully support it. The clinicians at Royal Brompton have been very vocal and proactive in support of a comprehensive network for children with heart disease across London and the rest of the country. But we would only do that as equal partners, because we are advocates for our patients, and because we have a responsibility to uphold the principle of ‘first do no harm.’

Dr Sian Jaggar – consultant anaesthetist

As a specialist in anaesthesia and analgesia for individuals with congenital or acquired heart and lung disease, I have the pleasure of caring for patients and their families throughout their lives, irrespective of their age, all of whom may be affected by multiple other factors.

Families and patients have told me how much they appreciate seeing the same familiar faces when they come to theatres or catheter labs, even when they move from the paediatric to the adult wards. The feeling of continuity of care is a very positive experience.

In addition to caring for these patients when they are undergoing interventions relating directly to their hearts and lungs, I also provide care during other procedures. It is incorrect to believe that we are not able to provide support for patients across the whole range of medical specialities. We have great interactions with specialists in other areas and I, not infrequently, provide anaesthesia for general, ENT and gynaecological procedures required in this patient group. This is because the surgeons involved (and the anaesthetists they work with in more general hospitals) appear to believe that Royal Brompton’s anaesthetic and intensive care departments provide this group of patients with optimal peri-operative care.

I really feel it is important to challenge the notion that removing children’s heart surgery services from the Royal Brompton Hospital is the safest thing to do. The continuing care model is ideally suited for children born with congenital heart diseases. Indeed other major cardiac surgical centres in the world choose to practise this model.

I believe London deserves units that can provide different models of care to suit different patients, and I suspect this is what patient choice is supposed to involve.

Read about Dr Jaggar

Mr George Ladas – consultant thoracic surgeon

The sarcoma team at Royal Brompton Hospital is the designated exclusive provider of thoracic sarcoma surgical services for the London and South East England Managed Sarcoma Supra-Network, which serves a population of 18.5 million and is the largest sarcoma network in the UK. This came about as the result of the "Improving Outcomes for Patients with Sarcoma" NICE guidance, focusing on centralisation of treatment for these rare cancers to centres with accumulated expertise and a track record of excellent results. Looking after young people with sarcoma, is a crucial part of our commitment. 

We hold videoconference meetings every week with our specialist sarcoma oncology colleagues at the Royal Marsden and University College Hospitals, our partners in the Sarcoma Supra-Network, and individualised treatment plans are drawn up for every sarcoma patient.  

Committed to excellence, we are continuously investing in pioneering surgical techniques to ensure delivery of care of the highest quality to our patients. We have introduced the first lung laser surgical system in the UK in March 2010, and have now performed more than 60 laser metastasectomies with excellent results.

The top-class care afforded to our young sarcoma patients at our paediatric intensive care unit post-operatively is a crucial factor for the success of these often very complex and extensive surgical procedures. Royal Brompton's sarcoma team and our young sarcoma patients are relying heavily on our PICU.

Closure of the paediatric cardiac unit at the RBH will inevitably result in closure of the PICU. Such a development would be disastrous for our ability to treat paediatric and adolescent patients with sarcoma. Given the highly specialised and unique nature of our service this is really unthinkable.

Royal Brompton Hospital is indeed "a port of last call" and as such provides a wide range of closely intertwined, highly specialised services made possible only through the close collaboration of various expert clinical teams. Closure of our PICU is unthinkable as it would remove a mainstay of our paediatric sarcoma service with devastating consequences for our young cancer patients.

Read about Mr Ladas

Dr Mark Rosenthal – paediatric respiratory consultant

Royal Brompton Hospital has the UK’s largest cystic fibrosis clinic (330 patients), a primary ciliary dyskinesia (PCD) clinic (130 patients), difficult asthma patients (130 patients), a bronchoscopy service (230 patients) and a sleep service (780 patients).

We have one of the world’s largest cohorts of patients (220) on non-invasive ventilation (NIV).

We regularly visit 17 other hospitals for outreach care.

All these services require access to both skilled paediatric anaesthesia and paediatric intensive care (PICU) amongst other disciplines.

It is undeniable that the considerable majority of PICU beds are used by cardiac surgery. Thus, it is the size of the PICU that allows respiratory services to flourish and to have that essential safety net for both the expected and occasional unexpected problem.

Taking paediatric cardiac surgery away, makes PICU and paediatric anaesthesia non-viable both financially and professionally as without continuous throughput, skills are lost and units drift and close. Without PICU, it would be unsafe to continue to manage all but the most routine of paediatric respiratory patients and Royal Brompton instantly and rightly loses its currently justified reputation as a hospital of ‘last resort’.

Where would all these patients go? Great Ormond Street has a self-imposed cap of 200 cystic fibrosis patients and, currently, no PCD or difficult asthma service. Their sleep service is already bursting at the seams with work. The Evelina has no full-time respiratory consultant service at all and no non-behavioural sleep service; they refer all NIV issues to us…

Dr Anna Seale – paediatric consultant

In my job I assess babies before birth to determine whether they have congenital heart disease. I diagnose what type of heart defect they have, giving parents as much information as possible. In addition to seeing me regularly during pregnancy, parents often meet our congenital cardiac surgeons and, in some cases, our adult congenital cardiac doctors, to discuss treatments and implications to their unborn child. We have regular meetings updating our cardiac surgeons about these pregnancies.

Our specialist fetal cardiac liaison nurses provide parents with ongoing support. The specialist nurses and fetal cardiologists also keep contact with local obstetric and paediatric teams planning delivery and immediate care of the new baby. Many excellent networks have been formed.

In my job I also assess the babies after birth and plan interventions along with our surgical and interventional teams. In some cases I will be in theatres during the operation, being involved with specialised imaging. I visit the families on the intensive care ward and often follow-up the babies in my paediatric cardiac clinics.

This continuity of care forms a special bond between myself and my patients and, because I am aware of the issues that have occurred throughout the child's journey, helps optimise care.

I am concerned that if surgery is removed from Royal Brompton, this continuity of care will be lost. I am not convinced the patient pathway will be improved.

Dr Lorna Swan – consultant cardiologist (adult congenital heart disease)

Losing paediatric cardiac surgery services from Royal Brompton would be tragic.

One of the main injustices is that the decision-makers have never worked in this model of care, which is envied internationally, and do not recognise that our patients truly benefit from being cared for in a unique environment, where almost every member of staff knows what congenital heart disease is. This is strongly in the patient’s best interests and they value it very highly.

There is real benefit from all clinical groups working together. The paediatric cardiac services are better because the team sees the medium- and long-term outcomes of their handiwork, and the adult congenital cardiology team benefits by pre-empting the impact of new changes in paediatric best practice. Without the external pressures of a large “general” hospital, supra-specialisation flourishes – from anaesthetics to haematology and from cath lab intervention to specialist pathology services. This close clinical and academic collaboration makes Royal Brompton a very special place for the patients.

Removing children’s heart services will destroy much of what is special about Royal Brompton.

Congenital heart services at Royal Brompton attract hosts of international doctors who recognise that Royal Brompton is a leader in the field. They come, often at their own expense, or funded by their governments, so they can see the whole spectrum of congenital heart disease on one site, paediatrics and adult.

The whole Safe and Sustainable process is being driven by one event in a patient’s life. We all recognise that that event - the first surgical intervention/s - is important, but equally as important is the ability to have continuous life-long specialist care in a truly multi-disciplinary environment.

Read about Dr Swan

Dr Jan Till – paediatric cardiologist (electrophysiology)

Royal Brompton Hospital offers a model of care from prenatal to child to adult. There are few other hospitals able to offer such holistic, fully integrated, specialist care.

I care for patients who are unborn, neonates, children, teenagers and young adults who have either a heart rhythm that is too fast or too slow. Many of these conditions are inherited and so the parents of such children may have the exact same condition. Many are life threatening and some at risk of sudden death. In our dedicated multidisciplinary clinic all members of the family can be seen during the same visit, under the same roof.

As a hospital with adult and paediatric services, we are ideally suited to manage patients in the adolescent age group who need care from their teenage years to young adult life. I work in an environment where it is clear that long-term follow-up unquestionably informs early management of children – joint decision-making between paediatric and adult specialists is integral to the service we deliver.

Children with rhythm abnormalities may require a device i.e. a pacemaker or an implantable defibrillator, as part of their management. Worldwide, such devices are much more commonly used in adult patients. Royal Brompton is uniquely placed to provide optimum management for these children as we can use our extensive experience gained in the adult service to best serve these children and provide groundbreaking treatment.

The electrophysiology service we offer for children requires the back-up of the intensive care and the surgical team. It has been suggested that procedures could continue at a site without surgical and intensive care backup. In terms of safety, I think this would present a hugely inferior service to that which is now available. These procedures require good cardiac anaesthesia from paediatric-trained anaesthetists. Royal Brompton would not be able to retain or attract these doctors if paediatric surgery is removed.

Children will certainly suffer as a result of the proposed changes and, on behalf of these patients, I feel strongly that the changes should be reconsidered.

Read about Dr Till

Dr Anselm Uebing – consultant cardiologist

I have only recently been appointed as a consultant to the Adult Congenital Heart Disease Unit at Royal Brompton Hospital, and was stunned and disappointed when I heard about the plans to close paediatric congenital surgery here.

I care for patients who need treatment in the catheterisation laboratory (“keyhole surgery”). Many of my patients underwent cardiac surgery early in their lives at Royal Brompton and were looked after in the paediatric cardiology department.

It is usual practice that we discuss most of our procedures together with our congenital heart surgeons and paediatric colleagues. We often plan and perform our interventional procedures together. I believe this form of co-operation is ideal when caring for patients with complex congenital heart conditions. Such close co-operation, however, is only possible in a hospital such as Royal Brompton, where paediatric and adult cardiac services are located under the same roof.

Before starting at Royal Brompton I trained and worked as a paediatric and congenital cardiologist in a big tertiary centre in Germany. The paediatric cardiac service there - including congenital cardiac surgery - was located in the children’s hospital and hence very remote from adult cardiology and general cardiac surgery. Co-operation between adult and paediatric cardiologists was always complicated and often almost impossible to organise. When deciding whether or not to move with my family from Germany to the UK, the prospect of working with the “Brompton model” of care for patients with congenital heart disease was the strongest argument. In Germany, and internationally, the “Brompton model” is regarded as the role model for care of patients with congenital heart disease of all age groups.

I am convinced that a congenital heart disease service with a unique international reputation will be destroyed if paediatric cardiac surgery is removed from Royal Brompton.

Read about Dr Uebing