Standard statement

NHS boards ensure that people with CHD have access to seamless interspecialty care.

Rationale

People with CHD have an increased risk of associated conditions. For example, syndromic and genetic conditions such as Down’s syndrome are over-represented in the CHD population.63 Access to dental care can reduce the risk of infective endocarditis.64 Babies and children with CHD require specialist support to reduce the risk of malnourishment.65 NHS boards should ensure timely and convenient access to other specialist services and support services.

Lifelong care requires effective communication and partnership working between services. Defined local and national roles and protocols ensure that people living with CHD are able to access the right care, from the right person, at the right time.

Criteria

7.1

People with CHD have access to a clearly-defined care or management plan17 detailing the role of services and timing of appointments.

7.2

NHS boards ensure that there is:

  • sharing of expertise and advice between services
  • effective discharge planning
  • planned transfer of care between the national and local service.
7.3

NHS boards, in partnership with the national service, provide access to paediatric dietetic advice specific to CHD.

7.4

NHS boards have clear referral pathways from primary care to CHD services.

7.5

Link cardiologists and paediatricians can remotely join multidisciplinary team discussions with the national service as required.

7.6

NHS boards have facilities and systems in place to view relevant real-time clinical information from the national service, including appointment times.

7.7

NHS boards ensure people with CHD can access twice yearly dental care, including follow-up as necessary.

7.8

People with CHD are offered cardiac rehabilitation that meets their needs and goals.

7.9

People with CHD are offered access to heart failure specialist nursing if required.20

What does this standard mean for...

What does the standard mean for people with CHD?

  • Services work together to support you.
  • People who look after you have up-to-date information about you and your medical history.
  • Where possible, clinic appointments and tests will be coordinated and planned between services.
  • You can be confident that the people involved in your care work effectively together and with your usual specialist care team when needed.

What does the standard mean for staff?

Staff:

  • work across services to care for people with CHD
  • have knowledge of, and are able to refer to, specialist services
  • are able to share information and expertise between health professionals, teams and services.

What does the standard mean for the NHS board?

NHS Boards:

  • ensure that pathways and processes are well-coordinated and facilitate shared care
  • develop processes for information sharing between teams, professionals and those receiving care
  • ensure continuity of care and support.

Examples of what meeting this standard might look like

  • Referral pathways from primary care.
  • Networks, learning systems and joint improvement work.
  • Data flow, information sharing agreements and integrated systems.