Standard statement

NHS boards provide high quality outpatient care for people with CHD.

Rationale

Effective outpatient clinics facilitate recognition and early response to changes in a person’s condition. They provide an opportunity for people to discuss their symptoms and access high quality diagnostics and monitoring.17, 59 People should be empowered to understand changes in their condition and access clinics if they need them.22

Digital systems and timely information sharing can support early response to changes in people’s condition.60

Ongoing outpatient care should be provided as close to the person’s home as possible, depending on their circumstances. It should be delivered by a designated local link paediatrician or link adult cardiologist. Clinics should include access to a local congenital cardiac nurse,61 cardiac physiology62 and input from the relevant national service if required. Ideally, relevant tests or scans should be undertaken at a single visit to reduce travel and clinic times.

Criteria

6.1

People with CHD have access to a designated outpatient clinic, appropriate to their assessed needs, which includes:

  • ECG, echocardiography and phlebotomy
  • baseline observation
  • device interrogation and cardiac monitoring.
6.2

Staff working in outpatient clinics can access, as required:

  • information and results of investigations
  • effective and high quality IT systems
  • equipment appropriate to the imaging needs of the clinic population
  • facilities for archiving echocardiogram images
  • echocardiogram images from other services.
6.3

NHS boards ensure necessary staffing to deliver a paediatric cardiology outpatient clinic including:

  • support from a paediatric cardiologist
  • delivery by a link paediatrician
  • local congenital cardiac nurses with access to congenital cardiac nurse specialists and healthcare assistants
  • administrative and support staff
  • appropriately-trained cardiac physiology staff.
6.4

NHS boards ensure necessary staffing to deliver an adult cardiology outpatient clinic including:

  • a link adult cardiologist
  • local congenital cardiac nurses with access to congenital cardiac nurse specialists and healthcare assistants
  • administrative and support staff
  • appropriately-trained cardiac physiology staff.
6.5

NHS boards ensure that communication between outpatient clinics, including the outcome of discussions and results, is produced in a timely manner and shared with:

  • the appropriate healthcare professionals
  • the person with CHD and their family/representatives if requested.
6.6

Outpatient services:

  • identify barriers to access
  • support people to attend
  • proactively re-engage people who do not attend clinics.
6.7

Individuals are provided with information on how to transfer or re-access outpatient services if they move area or choose to pause attendance.

6.8

NHS boards provide access to:

  • rhythm monitoring
  • radiology (CT or MRI) including for aortic conditions
  • high quality imaging and reporting in line with national guidance
  • referral pathways for complex imaging.

What does this standard mean for...

What does the standard mean for people with CHD?

  • You have dedicated time to discuss any concerns you have about your condition and any changes in your symptoms.
  • You will get the tests you need.
  • You will be fully supported to access clinics if you move area or pause attendance for any reason.
  • Staff have the skills and information they need to look after you.

What does the standard mean for staff?

Staff:

  • have the right skills and training to support CHD outpatient care
  • can access information they need to detect and respond to changes in a person’s condition
  • are able to communicate and share information relating to the person’s care between other staff members and teams.

What does the standard mean for the NHS board?

NHS Boards:

  • provide the required resources for a dedicated CHD outpatient clinic for their local population
  • provide access to high quality monitoring and imaging in as few appointments as possible
  • ensure that clinically-relevant information, including scan images, can be shared between services.

Examples of what meeting this standard might look like

  • Provision of same-day tests including echocardiograms.
  • Shared and real-time clinical systems.
  • Workforce planning and clinic staffing levels in line with safe staffing legislation.
  • Clinic population needs assessments.
  • Innovation and outreach to reduce inequalities of access.