NHS England proposes new standards for congenital heart disease services

NHS England today (Monday) launched a consultation on standards which aim to drive high quality care for children and adults with congenital heart disease wherever they live, throughout their lives.

Congenital Heart Disease (CHD) refers to birth defects that affect the normal workings of the heart. These range from severe life threatening conditions that need immediate surgery, at or even before birth, to minor conditions that may not need treatment. All require specialist diagnosis, monitoring and care.

The proposed new standards were developed with patient representatives, children and young people and clinical staff from specialist surgical centres. They were then considered by an expert clinical advisory panel.

The standards describe how services should be organised and delivered to achieve the highest quality for patients within the available resource, requiring specialist hospitals to work together within regions and across the country to improve care.

CHD is a lifelong condition so it is important that the whole lifetime pathway of care is seamless and consistent. For the first time, the draft standards cover every part of the patient’s life from early diagnosis in the womb, through childhood, adolescence, adult life, planning a family and onwards.

The standards cover 13 areas including: communication with patients and their families; staff and skills needed in teams; transition for children moving between child and adult services; working with other healthcare services patients might need; and support for patients and their families when their disease is not responsive to treatment.

A roadshow of drop-in events will be held across the country, where people will be able to find out more about the draft standards and can complete a consultation response if they wish.

Following consultation and agreement of the final standards, they will be written into service specifications. These set out requirements of a service and form the basis of contractual arrangements between NHS England and hospitals providing care.

Dr Jackie Cornish, National Clinical Director for Children, Young People and Transition to Adulthood, NHS England, said: “Congenital heart disease services in this country already provide good, safe care, with high survival rates after surgery. But we know there are areas for improvement, and we want consistent services of the highest quality for all our patients throughout their lives, wherever they live. We know this is what patients want, and it is what they deserve. Our aim is to ensure a high standard of service is sustainable for future generations of children.”

Professor Huon Gray, National Clinical Director for Heart Disease, NHS England, said: “Patients, the public, doctors and surgeons told us the best way to improve services is to implement the same set of standards across the board. They spoke and we listened. We now want to gather people’s views on our proposals – it is absolutely crucial we get this right for patients and we want to hear what people think. This is not a done deal, and everyone has the opportunity to give their feedback on the standards.”

The consultation on draft standards is one part of the congenital heart disease review led by NHS England. It is also:

  • Analysing current and future demand for services
  • Looking at the overall shape of the service that is provided
  • Considering how best to commission any required improvement and support the necessary change
  • Reviewing how better, more timely information can be provided
  • Looking at ways to achieve better earlier diagnosis of CHD.