Read Standard 4: Mental health and emotional wellbeing

Congenital heart disease (CHD) standards
Healthcare Improvement Scotland

Standard statement

NHS boards provide a compassionate and understanding CHD service and ensure people with CHD can access support if they need it.

Rationale

Many people with CHD can experience psychological, financial and social challenges.29, 35 Up to 50% of people with CHD are diagnosed with anxiety, depression or post-traumatic stress disorder in their lifetime.36 People with CHD often have neurocognitive difficulties or disabilities which affect executive function, memory, language and communication.39, 40

Serious illness is an adverse childhood experience.37, 38 Frequent hospital stays and medical interventions can be traumatic and distressing for children and families.41, 42 Disruption to early attachment can affect children’s behaviour and social cognition. 42, 43

Children with cardiac conditions may be more withdrawn, engage in fewer activities and struggle socially. Older children and adolescents are at risk of developing significant psychological difficulties such as anxiety and depression.43 Parents and families of children with CHD often require support for their own mental health.44, 45

Adults with CHD, particularly people who were diagnosed many years ago, may require enhanced support which takes into account their historical experience of care.46

Psychologically informed services understand and mitigate distress, fear, anxiety and trauma associated with medical intervention.32 Services that promote wellbeing and psychological safety can reduce health inequalities and improve outcomes.32 Understanding and acknowledging the experiences of people who have experienced trauma can help services improve for everyone.47, 48

Criteria

4.1

NHS boards have established referral pathways to specialist mental health and support services for people with CHD, including third sector and peer support services.

4.2
NHS boards follow action plans to meet quality frameworks for trauma-informed care.47
4.3

Staff use validated screening tools to assess the mental health and wellbeing of people with CHD and, where appropriate, their families/representatives.

4.4

People with CHD, and where appropriate their families/representatives, have access to an initial appointment for their mental health which:

  • meets their needs
  • upholds their rights
  • is as close to home as possible
  • is within 12 weeks of referral.49
4.5

Children and young people have access to mental health and wellbeing support including:

  • clinical or practitioner psychology
  • age and stage appropriate therapeutic support such as play specialists whole family support.
4.6

People with CHD are informed about options for continuous or ongoing support for their mental health and emotional wellbeing, including unscheduled mental health support.

4.7

People with CHD, and where appropriate, their families/representatives, can access support from a local congenital cardiac nurse, who can provide continuous emotional wellbeing support and advocacy.

4.8

People with CHD and their families/representatives can:

  • meet staff and see places or equipment before appointments, where possible
  • choose someone they know to be with them or nearby at appointments
  • discuss any concerns or anxiety that they may have before appointments or interventions.
4.9

Families/representatives of people with CHD are offered:

  • access to mental health support from a person with the appropriate skills and knowledge of people with lifelong physical health conditions
  • physical contact with babies and children during hospital stays50
  • signposting to relevant support organisations
  • pre-emptive support at key stages of a person’s life.
4.10

Enhanced and tailored support as required is provided for people with social communication needs, learning disabilities or additional support needs.

What does this standard mean for...

What does the standard mean for people with CHD?

  • Your mental health and emotional wellbeing will be prioritised throughout your care.
  • Staff understand your experience and the impact it may have had on you.
  • If you need support for your mental health or emotional wellbeing, you know where to go or who to turn to.

What does the standard mean for staff?

Staff:

  • promote early attachment and bonding between babies and their parents or families
  • know who to refer to if someone needs support
  • recognise and respond to trauma associated with medical intervention
  • receive support for their own mental health and emotional wellbeing.

What does the standard mean for the NHS board?

NHS Boards:

  • develop referral pathways and arrangements with a broad range of mental health and emotional wellbeing services
  • ensure that staff have time to support and care for people and their families 
  • review their service to ensure it is supportive and trauma-informed.

Examples of what meeting this standard might look like

  • Actions taken as a result of feedback from people who experience services.
  • Evidence of the use of routine screening for anxiety and depression using a validated measure.
  • Documented risk strategy if someone presents as highly distressed or suicidal.
  • Signposting to support group and peer-support for both the person with CHD and their families.