Congenital Heart Disease Commissioning and Implementation Programme

Consultation: Proposals to implement standards for congenital heart disease services for children and adults in England

We have launched a consultation on our proposals to implement standards for congenital heart disease (CHD) services for children and adults. We know that implementation of these proposals will have an impact, not just on patients, but on a small number of hospitals, and some of the other services which they deliver, as well as the staff working in them.

We want to make sure that we hear from as many people as possible during the consultation period, which runs from Thursday 9 February 2017 to 5 June 2017.

Have your say on our consultation hub

Implementing standards for congenital heart disease services for adults and children

We have consulted on the standards that all CHD services must meet in order to provide high quality and safe CHD services for adults and children. The next phase is to make sure we implement those standards effectively, supporting and working with clinicians, local hospitals, the patients and the public across England.

What has happened so far?

Anybody who is familiar with the history of congenital heart services will know that the publication of NHS England’s proposals in the summer of 2016 represented the latest milestone in a very long journey, stretching back almost 20 years, in which the NHS has tried to take action to improve the delivery, and quality, of CHD care.

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.

2016 onwards – implementing the standards

In September 2015 the CHD Commissioning and Implementation Programme began to support the introduction of the new CHD standards.

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.

In July 2016, NHS England published a set of proposals regarding the future commissioning of CHD services for children and adults. They described a set of actions NHS England were considering  taking in order to guarantee  consistent  care for CHD patients across the country, where ever they may be , now and in the future

Why are we doing this?

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.

Now is the time for decisive action. We have a golden opportunity to implement the standards, and we must take the opportunity to gather everyone’s views and work together in taking this work forward.