Read Standard 8: Transition between paediatric and adult services

Congenital heart disease (CHD) standards
Healthcare Improvement Scotland

Standard statement

NHS boards ensure that people with CHD experience a seamless and person-centred transition between paediatric and adult services.

Rationale

Young people with CHD move between paediatric and adult services as they grow up. The process for transition should start before the person is 14 years old. The exact timing should be determined by personal circumstances and choice.66 Ongoing care, including plans for unscheduled care, must continue during the process.67 The wishes of the young person and their family/representatives should be central to planning.68 Young people should be actively involved in planning and be listened to and taken seriously.41, 67

The transition process should involve a link paediatrician, a link adult cardiologist and a local congenital cardiac nurse. Local and national services should coordinate and carry out transition pathways concurrently. Clinically relevant information, records and care plan should be kept throughout the process.69 Established protocols and legislation govern how health data is accessed and shared.

Criteria

8.1

NHS boards ensure that there is:

  • a robust, seamless and documented transition process between paediatric and adult services, involving the national service where required
  • a transition clinic
  • time for individual consultation with the person with CHD and where appropriate, their family/representatives
8.2

NHS boards ensure that the transition process includes:

  • the person with CHD and where appropriate their family/representatives
  • a local congenital cardiac nurse
  • an adult link cardiologist
  • a link paediatrician
  • specialist third sector organisations if requested.
8.3

The timing of transition is based on the person’s choice and circumstances and begins before they are 14 years old.

8.4

A person-centred transition care plan is developed which is:

  • led by the person and their representative
  • informed by the person’s needs and desired outcomes
  • reviewed as needs change.
8.5

People with CHD are involved in discussions about who their transition plan is shared with and when.

8.6

People with CHD and where appropriate their family/representatives have access to:

  • general lifestyle advice, support and signposting to external agencies (including peer support)
  • preconception, sexual health and contraception counselling advice and support
  • psychological support and referral.
8.7

Staff support people with CHD to self-manage their condition taking into account personal choice and changing circumstances during transition.

8.8

NHS boards ensure that systems and pathways are flexible to meet the needs and rights of young people who may require unscheduled care during transition.

8.9

A person-centred plan for unscheduled care is in place during transition.

What does this standard mean for

What does the standard mean for young people with CHD?

  • You will move to the adult CHD service at a time that is right for you.
  • The transition will be planned and supported and you will be included in this process.
  • Your thoughts and what matters to you will be important.
  • You will get information in a way that is right for you.
  • Your condition will be monitored and you will be looked after during the transition.

What does the standard mean for staff?

Staff:

  • plan transition between paediatric and adult services with input from relevant specialties
  • listen to and involve people and, where appropriate, their families/ representatives
  • are able to signpost people and refer to support services appropriate to their needs.

What does the standard mean for the NHS board?

NHS boards:

  • follow a documented transition process for young people with CHD
  • demonstrate close working relationships between local and national paediatric and adult services
  • ensure that staff are supported to provide the right care, support and signposting to people with CHD during transition.

Examples of what meeting this standard might look like

  • Documented transition process.
  • Individual and accessible transition plans.
  • Young people’s involvement in the design of transition processes and information resources.
  • Support and peer groups for children, young people and their families/representatives.