Read Standard 1: Leadership and governance

Rationale

NHS boards are responsible for the delivery of a high quality, lifelong CHD service for their respective populations. NHS boards must oversee the whole CHD care pathway, from fetal diagnosis to ongoing treatment and care.¹⁷ Nominated lead clinicians for both paediatric and adult services provide essential oversight and assurance.

NHS boards have responsibility for clinical and care governance of all NHS services, including local CHD services. Good clinical and care governance includes adhering to guidelines and policies for adverse events management, whistleblowing, escalation procedures and data monitoring.¹⁵, ¹⁶ This leads to better patient safety and improved clinical outcomes.

People with CHD and their families/representatives are an integral part of the design and monitoring of services.¹⁸ Feedback allows NHS boards and services to plan improvements based on what matters to people. Implementation of the health and social care standards in all services upholds people’s rights to compassionate, safe and person-centred care.¹⁹

Criteria

1.1

NHS boards demonstrate robust governance arrangements across the CHD service, with clear lines of accountability, covering all aspects of the person’s care pathway.

1.2

Each NHS board can demonstrate:

protection of people’s rights
implementation of the Health and Social Care Standards.

1.3

NHS boards have nominated lead clinicians who work collaboratively to provide:

paediatric CHD care and support
adult CHD care and support
transition between paediatric and adult services.

1.4

NHS boards participate annually in a national joint adult and paediatric CHD steering group. The group is responsible for:

reviewing the quality and effectiveness of CHD services
implementation of the HIS CHD standards
sharing and acting on learning from quality improvement activities
use of data to monitor performance and improvement.

1.5

NHS boards have systems and processes to demonstrate:

adherence to safe staffing legislation
compliance with professional and organisational codes of practice.

1.6

NHS boards have a local structured escalation and adverse events process, in line with national policy, which includes:

details of the person responsible and accountable for reporting any adverse events
a standard and consistent approach to reporting
a documented escalation process and incident management process
processes for monitoring actions and learning from adverse events.

1.7

NHS boards have systems and processes to demonstrate adherence to national whistleblowing standards.²¹

1.8

NHS boards demonstrate their commitment to addressing health inequalities through:

effective aggregated and anonymised data collection on the CHD population
meaningful engagement with people with CHD and their families/ representatives from all backgrounds.

1.9

NHS boards have pathways in place to ensure that people with CHD have access to:

a local congenital cardiac nurse
psychological support from a psychologist with specialist knowledge of long-term physical health conditions
cardiac rehabilitation for adults with CHD.²⁰

1.10

People living with CHD have the option of care close to home or the most accessible service for them.

1.11

NHS boards work nationally, regionally and locally to continuously improve service design and structure through:

joint improvement work
digital and technological advancement
feedback from people with CHD and their families/representatives.

1.12

NHS boards work in collaboration with the national services to collect and share data as required to support national benchmarking and research.

What does this standard mean for...

What does the standard mean for people with CHD?

You can be part of the design and monitoring of the CHD service if you want to be.
You can be confident that the CHD service monitors and reviews its performance to keep improving.
Staff work together to provide you with a high quality service.
You will be listened to and taken seriously if you have any concerns about the service.
There is a system to learn from others and share good practice.

What does the standard mean for staff?

Staff:

are provided with effective leadership
are aware of how to report and escalate adverse events
work according to clear guidelines and standards
can share feedback to inform service improvements.

What does the standard mean for the NHS board?

NHS Boards:

provides high quality care and support services to people with CHD
involves people with CHD in service design and review
has governance arrangements in place demonstrating roles and responsibilities and lines of accountability, including escalation routes, adverse events management and incident management
records and monitor data to continuously monitor performance
undertakes quality improvement and assurance activities.

Examples of what meeting this standard might look like

Documentation describing lines of accountability, roles and responsibilities, escalation routes, incident management and adverse events management reporting.
Documents describing learning and improvement from adverse events.
Documentation describing the representation on a national steering group such as terms of reference.
Multidisciplinary working, including involvement of professionals, care pathways, and local standard operating procedures.
Action plans demonstrating implementation of the HIS CHD standards.
Improvement work, data collection and review of data, including feedback from people with CHD.