Read Standard 2: Person-centred care and shared decision-making

Congenital heart disease (CHD) standards
Healthcare Improvement Scotland

Standard statement

People with CHD can access information that is right for them and are supported to participate in decisions about their care.

Rationale

People are individuals and experts in their own condition.22 Person-centred care involves people, their families/representatives and services working together in partnership.23 It is based on each individual’s personal goals, preferences and needs.24 This results in more effective care with better outcomes for people living with CHD.17

Being part of discussions and decisions about their care requires people to be fully informed and taken seriously.25 People can be empowered when they are supported to make decisions about what matters to them.19, 26 Information should be available in the format and language that is right for the person. The format should take into account age, psychological, social, cultural and spiritual factors. Information and discussions should be delivered in a way that is inclusive of people with learning or developmental disabilities.

Criteria

2.1

People with CHD are fully informed, listened to, involved in and supported through all stages of their care.

2.2

People with CHD are supported to develop the knowledge, skills and confidence to manage their own condition and medication, as appropriate.

2.3

Families/representatives of people with CHD are fully informed and involved in discussions and decisions, where appropriate.

2.4

People with CHD have:

  • high quality information that meets their communication or support needs
  • a summary of their medical history and care plan
  • access to their records and relevant information about themselves and their care if requested.
2.5

NHS boards ensure people with CHD can:

  • participate in shared decision making at all stages of their care
  • discuss any aspect of their condition with enough time and support
  • raise questions or concerns
  • provide feedback on their care and experiences.
2.6

NHS boards provide people with CHD (and their families or /representatives, where appropriate) with:

  • information and support that is relevant to their language, age, understanding, circumstances and diagnosis
  • information about the service, including who to contact and how to arrange appointments
  • contact details of relevant health professionals
  • contact details of relevant third sector or support services.
2.7

People with CHD (and their families/representatives, where appropriate) receive:

  • signposting to social, financial, educational and occupational advice
  • practical support to manage their condition.
2.8

People can choose to access remote or in-person consultations or appointments where appropriate.

2.9

Staff ensure that informed consent is obtained prior to using medical information as a teaching case.

What does this standard mean for...

What does the standard mean for people with CHD?

  • You are recognised as an individual, listened to and taken seriously.
  • You will be involved in discussions and decisions about your care and support.
  • You receive information and support on CHD and the care and treatment you will experience or be offered.
  • Information is in a format and style that is right for you.
  • You can discuss any aspect of services or care, raise questions or concerns and provide feedback.

What does the standard mean for staff?

Staff:

  • support and listen to people with CHD
  • actively engage with people to understand their needs and preferences
  • understand that people are affected by CHD in different ways and offer appropriate support that reflects individual needs and preferences
  • can support people (and their families/representatives where appropriate) to reach informed decisions in partnership with their healthcare professionals
  • signpost people to current information and support appropriate to their needs.

What does the standard mean for the NHS board?

NHS Boards:

  • NHS boards:
  • have systems and processes to ensure they deliver responsive care and support
  • ensure the availability of appropriate, easily accessible and timely information and support
  • have mechanisms to record and act upon feedback from people and their families/representatives
  • ensure that staff have time and resources to support and care for people.

Examples of what meeting this standard might look like

  • Evidence of information provided in alternative formats and languages, taking account of the needs of people who may be digitally excluded.
  • Clinical audit of CHD consultations with documentation of signposting or written information being provided.
  • Evidence of patient involvement in decision making, tools for shared decision making, and effective communication.
  • Ongoing engagement and support for people with CHD and their families/representatives.
  • Evidence of any changes made based on feedback received.
  • Evidence of support for people with additional communication needs, for example, people with sensory impairments or difficulties with speech and language.
  • Signposting and supporting people to access other support services.
  • Documentation relating to decision-making, feedback questionnaires and other communication methods relating to care plans.