When NHS England took on responsibility for the commissioning of CHD services and launched the ‘New Congenital Heart Disease Review’ in 2013, we were mindful of the impact of previous reviews. We were told by patients, and their families/carers and representatives, as well as clinicians in the field, that the best way to deal with these issues was through the development of service standards, setting out how a standardised CHD service should be set up, organised and run.
We worked with stakeholders for more than two years, as part of the New Congenital Heart Disease Review, to create a set of standards and service specifications that covered the entire patient pathway, from diagnosis, through to treatment, and on into care at home and end of life care, to make sure that every child, young person and adult with CHD, in every part of the country, would receive the same high standard of care.
Writing and agreeing the standards have never been considered as an end to developing the service. They were developed in the full expectation that their implementation at every hospital in the country providing CHD services would be the means by which our collaborative work would be delivered, by
- Securing best outcomes for all patients – not just reducing the number of deaths, but reducing disability caused by disease, and improving people’s quality of life;
- Tackling variation, so that services are consistent in meeting standards, each of them offering 24/7 care, seven days a week, as part of a nationally resilient service;
- Improving patient experience, including provision of better information for patients, plus more consideration of access and support for families when they are away from home.
The standards describe services to deliver quality care across the country. They were formally agreed by the NHS England Board in 2015 and we acknowledged then that implementation would be a challenge for some hospitals. We also recognised that it might subsequently prove necessary to make tough choices when considering how to put them into practice.
The guiding principle for our work has always been ‘patients come first’. That principle remains at the forefront of our thinking today. It was patients, and their families/carers and representatives, as well as clinicians in the field, who told us – consistently – that the standards were only worth something if they were actually implemented.
We know, from talking to stakeholders, that previous reviews of CHD services left them feeling exhausted and frustrated. The failure to implement previous recommendations has created uncertainty for patients and staff, and concerns raised during these, and other reviews, have remained.
So, during 2017 we consulted on proposals to implement standards for congenital heart disease (CHD) services for children and adults, following which the NHS England board reached a series of decisions that, once implemented, will ensure that all patients can be confident that their care is being delivered by a centre that meets the standards. Each centre now has a plan and is being assessed to ensure that the plans are delivered.