A funnel plot showing performance by UK regions suggests that the London region is performing better but in actual fact there are pockets of large quality variation and uneven detection as seen in Fig. 15.2. When we look at improving quality, there is a clear target for our energy and limited resources to drive improvements in a more focussed way.

The major limitation of many of these databases is that they focus only on those patients, who have operative or interventional procedures. Most nations do not have comprehensive congenital heart disease registries. This information is often held in local unit systems only, as a result of which we lack a true understanding of the real disease burden. This issue has a real impact as it limits our understanding of the true epidemiology of the congenital heart disease and the impact over the patient lifetime. Sweden acknowledged this deficiency a few years ago and amended its registries for GUCH (Grown-up Congenital Heart Disease) and surgery, to include all children with congenital heart disease (Swedcon) [4] to answer the questions about lifelong illness and its burden. In its annual report in 2011, the Swedcon registry identified 35,974 patients in its registry, 6,125 patients, who should have been seen in a GUCH centre, but had not done so. This represents 17 % of the total in the Swedcon registry. This information is of vital importance in ensuring ongoing good quality of care [5]. No information is available, on how many of these patients may have moved overseas or who may have died in the period during transition.

Clinicians have recognized the need for standard nomenclature for both surgical and diagnostic coding. During the early part of the last decade, clinicians worked together to cross-map and define a common coding set, which combined several European and North American nomenclatures into one which is the International Pediatric and Congenital Cardiac Code (IPCCC) [6, 7]. This harmonisation has allowed international collaborators from STS, EACTS and NCHDA to work on comparing outcomes for surgical and interventional procedures [8].

In-hospital care has significantly changed since the 1980s. These changes have delivered improvements for patients in pediatric cardiology based around three key areas:

Care in hospitals is delivered to the patients by many teams from different specialities, all working together to deliver excellent healthcare. Gone are the days when one doctor/surgeon was solely responsible for the care of the child. With the increasing complexity of surgery, patient care and expectations, the success stories are in no small part due to the comprehensive and co-ordinated working of many different specialities. It is common practice in major units for multidisciplinary teams to meet, discuss, plan and deliver joined up co-ordinated care, as can by the department profiles of major cardiac units [9–12]. The key to this is effective communication, which ensures that the whole team understands its role and works to deliver the best care and produce the best outcomes for the patients. In pediatric cardiology, such an approach has also led to the development of subspecialization. Experts in imaging, cardiac catheter interventions, congenital cardiac surgery & cardiac intensivists have all become an integral part of the team delivering care and producing outcomes demanded by the regulators and the patients. Indeed, within each subspecialty, smaller teams have evolved who become adept at dealing with more rare defects. In parallel, there has been the development of clinical skills within the nursing teams, whose roles are often developed through specific university courses and clinical based competencies.

Improvement in technology has occurred almost hand in hand with the development of multidisciplinary team working. Technology influences every aspect of the delivery of care. Over the last 30 years, major advances have been seen in imaging. Currently, three-dimensional echocardiography, magnetic resonance imaging and computerized tomography are routinely used and are rapidly replacing the need for cardiac catheterisations for the purposes of diagnosis in many units. Surgeons in particular and interventional cardiologists have achieved greater understanding from these imaging modalities of the complex defects they treat. Furthermore, image storage has moved from videotapes to CD/DVD technology and digital server based archiving, which ensures that images are available, whenever and wherever they are needed. In the internet age, for the clinicians in the United Kingdom, the ability to share secure images through the National Health Service (UK) Image Exchange Portal, a secure transfer portal via an encrypted network, has meant that secure transfer of images in a timely fashion is available.

In addition to the use of the internet is the ability to provide telemedicine. Telemedicine has the ability to allow rural communities and local clinicians access to specialist advice, which may previously have necessitated long and expensive journeys for the patients. In the past, telemedicine was an expensive and limited option. With the reduction of the costs for setting up and running telemedicine facilities, it has become a more realistic option [13]. Other advances include home monitoring programs, which allow clinicians to monitor remotely certain high-risk group of patients (such as hypoplastic left heart syndrome, HLHS) for signs of early deterioration, so that appropriate and timely admission/intervention can be instituted. These programmes have been shown to reduce interstage mortality in cases in whom staged surgical management is needed. Interventional cardiology was in its infancy 30 years ago. With technological advances, all types of devices, in different shapes and sizes, are available to treat many cardiac defects. Cardiac pacemakers have developed over a similar period with improvements in their battery life and size, resulting in the ability to treat more patients from an earlier age. In the last decade, other advances such as hybrid procedures have allowed the highest risk patients to undergo palliative combined surgical/interventional procedures with lower associated risks. Transcatheter valve implantation is a clear improvement in quality of care, by reducing the number of open heart procedures a patient may have over the lifetime and by avoiding the need for anticoagulation therapy, with its associated complications.

Videoconferencing technology has become a mainstream tool and has allowed clinicians to connect and discuss patients with all of the information and many of the commercial systems available incorporate content sharing. Obtaining a second opinion of a patient can now be done in the virtual presence of colleagues anywhere in the world. This has to be to the greater benefit of the patients and to the increasing expertise and learning of experts.