1. NHS. Congenital Heart Disease. 2021 [cited 2023 Apr 27]; Available from: https://www.nhs.uk/conditions/congenital-heart-disease/#:~:text=Congenital%20heart%20disease%20is%20a,babies%20born%20in%20the%20UK.
  2. Scottish Government. Heart disease: action plan. 2021 [cited 2023 Feb 01]; Available from: https://www.gov.scot/publications/heart-disease-action-plan/.
  3. Morton L. Using psychologically informed care to improve mental health and wellbeing for people living with a heart condition from birth: A statement paper. Journal of health psychology. 2020;25(2)(2). Epub 20190207. 10.1177/1359105319826354
  4. The Scottish Parliament. PE01446: Scottish Standards for the Care of Adult Congenital Heart Patients. 2012 [cited 2023 Nov 01]; Available from: https://archive2021.parliament.scot/gettinginvolved/Petitions/AdultCongenitalHeartScottishStandards.
  5. NHS Golden Jubilee. Scottish Adult Congenital Cardiac Strategy 2022 to 2025 2022 [cited 2023 Nov 01]; Available from: https://www.nhsgoldenjubilee.co.uk/application/files/3216/5910/7679/7.3_SACCS_Strategy_2022-25.pdf.
  6. United Nations. International Covenant on Economic, Social and Cultural Rights. 1966 [cited 2023 Nov 01]; Available from: https://www.ohchr.org/en/instruments-mechanisms/instruments/international-covenant-economic-social-and-cultural-rights.
  7. UNICEF. A summary of the UN Convention
    on the Rights of the Child. 2019 [cited 2023 Mar 21Nov 01]; Available from: https://www.unicef.org.uk/wp-content/uploads/2019/10/UNCRC_summary-1_1.pdf.
  8. United Nations. Convention on the Elimination of All Forms of Discrimination against Women New York, 18 December 1979. 1979 [cited 2023 June 30]; Available from: https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-elimination-all-forms-discrimination-against-women.
  9. United Nations. Convention on the Elimination of All Forms of Discrimination against Women New York, 18 December 1979. 1979 [cited 2023 Nov 01]; Available from: https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-elimination-all-forms-discrimination-against-women.
  10. Equality and Human Rights Commission. The United Nations Convention on the Rights of Persons with Disabilities: what does it mean for you? 2017 [cited 2020 Jan 15 2023 Nov 01]; Available from: https://www.equalityhumanrights.com/en/publication-download/united-nations-convention-rights-persons-disabilities-what-does-it-mean-you.
  11. United Nations. General comment No. 22 (2016) on the right to sexual and reproductive health (article 12 of the International Covenant on Economic, Social and Cultural Rights). 2016 [cited 2023 June 30]; Available from: http://docstore.ohchr.org/SelfServices/FilesHandler.ashx?enc=4slQ6QSmlBEDzFEovLCuW1a0Szab0oXTdImnsJZZVQfQejF41Tob4CvIjeTiAP6sGFQktiae1vlbbOAekmaOwDOWsUe7N8TLm%2BP3HJPzxjHySkUoHMavD%2Fpyfcp3Ylzg.
  12. United Nations. General comment No. 22 (2016) on the right to sexual and reproductive health (article 12 of the International Covenant on Economic, Social and Cultural Rights). 2016 [cited 2023 Nov 01]; Available from: http://docstore.ohchr.org/SelfServices/FilesHandler.ashx?enc=4slQ6QSmlBEDzFEovLCuW1a0Szab0oXTdImnsJZZVQfQejF41Tob4CvIjeTiAP6sGFQktiae1vlbbOAekmaOwDOWsUe7N8TLm%2BP3HJPzxjHySkUoHMavD%2Fpyfcp3Ylzg.
  13. NICE. Quality Standard - Intrapartum care: existing medical conditions and obstetric complications. 2020 [cited 2023 May 30]; Available from: https://www.nice.org.uk/guidance/qs192/chapter/Quality-statements.
  14. NHS. Pregnancy & Newborn Screening. 2023 [cited 2023 May 30]; Available from: https://www.pnsd.scot.nhs.uk/.
  15. NHSScotland. Local Services Paediatric and Adult Congenital Heart Disease Standards for NHS Scotland. 2018.
  16. Healthcare Improvement Scotland. Learning from adverse events through reporting and review: A national framework for Scotland: December 2019. 2019 [cited 2023 Nov 01]; Available from: http://www.healthcareimprovementscotland.org/our_work/governance_and_assurance/learning_from_adverse_events/national_framework.aspx.
  17. NHS England. Congenital Heart Disease Standards & Specifications. 2016 [cited 2022 Nov 15]; Available from: https://www.england.nhs.uk/wp-content/uploads/2018/08/Congenital-heart-disease-standards-and-specifications.pdf.
  18. Scottish Government. Clinical and care governance framework: guidance. 2015 [cited cited 2023 30 June]; Available from: https://www.gov.scot/publications/clinical-care-governance-framework/.
  19. Scottish Government. Health and Social Care Standards: my support, my life. 2017.
  20. BACPR. The BACPR Standards and Core Components for Cardiovascular Disease Prevention and Rehabilitation 2023. 2023 [cited 2023 Nov 01]; Available from: https://www.bacpr.org/__data/assets/pdf_file/0021/64236/BACPR-Standards-and-Core-Components-2023.pdf.
  21. Independent National Whistleblowing Officer. National Whistleblowing Standards. 2021 [cited 2023 Nov 01]; Available from: https://inwo.spso.org.uk/national-whistleblowing-standards.
  22. NHSScotland. The Charter of Patient Rights and Responsibilites. 2019.
  23. Scottish Government. Person-centred care: advice for non-executive board members. 2019 [cited 2023 Feb 07]; Available from: https://www.gov.scot/publications/person-centred-care-non-executive-members/pages/5/.
  24. NHS Education for Scotland. National Trauma Training Programme. 2022.
  25. Realistic Medicine. Shared Decision Making. 2023 [cited 2023 Nov 01]; Available from: https://realisticmedicine.scot/about/shared-decision-making/.
  26. Scottish Government. Health and Social Care Standards: my support, my life. 2017 [cited 2020 Jan 15 ]; Available from: https://www.gov.scot/publications/health-social-care-standards-support-life/.
  27. Baumgartner H, De Backer J, Babu-Narayan SV, Budts W, Chessa M, Diller GP, et al. 2020 ESC Guidelines for the management of adult congenital heart disease. Eur Heart J. 2021;42(6):563-645. Available from: https://academic.oup.com/eurheartj/article/42/6/563/5898606.
  28. Livecchi T, Morton L. Healing Hearts and Minds: Oxford University Press; 2023.
  29. Cocomello L, Taylor K, Caputo M, Cornish RP, Lawlor DA. Health and Well-Being in Surviving Congenital Heart Disease Patients: An Umbrella Review With Synthesis of Best Evidence. Frontiers in Cardiovascular Medicine. 2022;9
  30. NHS Education for Scotland. The Scottish Psychological Trauma Training Plan. 2019 [cited 7th July 2022]; Available from https://transformingpsychologicaltrauma.scot/media/5lvh0lsu/trauma-training-plan-final.pdf.
  31. Morton L. Using psychologically informed care to improve mental health and wellbeing for people living with a heart condition from birth: A statement paper. Journal of health psychology. 2020;25(2):197-206.
  32. Morton L. Using psychologically informed care to improve mental health and wellbeing for people living with a heart condition from birth: A statement paper. Journal of health psychology. 2020;25(2)(2):197-206. Epub 20190207. 10.1177/1359105319826354
  33. NHS Education for Scotland. The Scottish Psychological Trauma Training Plan. 2019 [cited 2023 Nov 01]; Available from: https://transformingpsychologicaltrauma.scot/media/5lvh0lsu/trauma-training-plan-final.pdf.
  34. Brida M, Simkova I, Jovovic L, Prokselj K, Antonova P, Balint HO, et al. European Society of Cardiology Working Group on Adult Congenital Heart Disease and Study Group for Adult Congenital Heart Care in Central and South Eastern European Countries consensus paper: current status, provision gaps and investment required. European Journal of Heart Failure. 2021;23(3):445-53.
  35. Moons P, Bulck LV, Daelman B, Luyckx K. Mental health in adult congenital heart disease. Internal Journal of Cardiology Congenital Heart Disease 2023.
  36. Kovacs AH, Brouillette J, Ibeziako P, Jackson JL, Kasparian NA, Kim YY, et al. Psychological Outcomes and Interventions for Individuals With Congenital Heart Disease: A Scientific Statement From the American Heart Association. 2022.
  37. Centers for Disease Control and Prevention. Adverse Childhood Experiences (ACEs): Preventing early trauma to improve adult health. 2021 [cited 2023 Nov 01]; Available from: https://www.cdc.gov/vitalsigns/aces/index.html#:~:text=ACEs%20can%20include%20violence%2C%20abuse,and%20substance%20misuse%20in%20adulthood.
  38. Public Health Scotland. Adverse Childhood Experiences (ACEs). 2021 [cited 2023 Nov 01]; Available from: https://www.healthscotland.scot/population-groups/children/adverse-childhood-experiences-aces/overview-of-aces.
  39. Gu S, Zhang Q, Katyal A, Chung W, Franciosi S, Sanatani S. Congenital Heart Disease and Autism Spectrum Disorders: Is There a Link? Paediatrics and Child Health (Canada). 2022;27 Suppl 3:e4.
  40. Stegeman R, Lamur KD, van den Hoogen A, Breur JMPJ, Groenendaal F, Jansen NJG, et al. Neuroprotective drugs in infants with severe congenital heart disease: A systematic review. Frontiers in Neurology. 2018;9(JUL):521. http://dx.doi.org/10.3389/fneur.2018.00521
  41. Chong LSH, Fitzgerald DA, Craig JC, Manera KE, Hanson CS, Celermajer D, et al. Children's experiences of congenital heart disease: a systematic review of qualitative studies. European journal of pediatrics. 2018;177(3):319-36. https://dx.doi.org/10.1007/s00431-017-3081-y
  42. Cobham VE, Hickling A, Kimball H, Thomas HJ, Scott JG, Middeldorp CM. Systematic Review: Anxiety in Children and Adolescents With Chronic Medical Conditions. Journal of the American Academy of Child and Adolescent Psychiatry. 2019;29.
  43. Abda A, Bolduc ME, Tsimicalis A, Rennick J, Vatcher D, Brossard-Racine M. Psychosocial Outcomes of Children and Adolescents With Severe Congenital Heart Defect: A Systematic Review and Meta-Analysis. Journal of Pediatric Psychology. 2019;44(4):463-77.
  44. Chin T, Horton H, Eagleson K, Kleinmahon J, Bora S. 679 Psychological Outcomes of Parents of Children With Congenital Heart Disease: A Systematic Review and Meta-Analysis. Heart Lung and Circulation. 2020;29 Suppl 2:S342.
  45. Eagleson K, McCombs D, Kasparian N, Justo R, Bora S. Congenital Heart Disease and Families: A Systematic Review of Measures of Impact and Adaptation. Heart Lung and Circulation. 2019;28 Suppl 4:S347.
  46. Kovacs AH, Bendell KL, Colman J, Harrison JL, Oechslin E, Silversides C. Adults with Congenital Heart Disease: Psychological Needs and Treatment Preferences. Congenital Heart Disease. 2009;4(3):139-46. 10.1111/j.1747-0803.2009.00280.x
  47. COSLA, NHS Education for Scotland, Scottish Government, Improvement Service. Quality Indicators Framework for Trauma-Informed Services, Systems and Workforces Proposal and Development Plan: Stakeholder Consultation. [cited 2023 Nov 01]; Available from: https://www.improvementservice.org.uk/__data/assets/pdf_file/0025/29437/Trauma-Informed-Practice-Quality-Indicators-Framework-Consultation-v2.pdf.
  48. Huo Y, Couzner L, Windsor T, Laver K, Dissanayaka NN, Cations M. Barriers and enablers for the implementation of trauma-informed care in healthcare settings: a systematic review. Implementation Science Communications. 2023;4(1):49. 10.1186/s43058-023-00428-0
  49. Scottish Government Mental Health Directorate. Delivery of psychological therapies and interventions: national specification. 2022 [cited 2023 Mar 15]; Available from: https://www.gov.scot/publications/delivery-psychological-therapies-interventions-national-specification/pages/2/.
  50. Bliss for babies born premature or sick. Parents aren't visitors. 2023 [cited 2023 Mar 15]; Available from: https://www.bliss.org.uk/research-campaigns/our-campaigns/parents-arent-visitors-take-action-to-keep-families-together.
  51. Yi-Fei Li K-YZ, Jie Fang, Chuan Wang, Yi-Min Hua, De-Zhi Mu. Efficacy of prenatal diagnosis of major congenital heart disease on perinatal management and perioperative mortality: a meta-analysis. World Journal of Pediatrics. 2016;12:298-307.
  52. Xiuqing Qiu ZW, Min Liu, Xiujuan Chen, Qiumei Wu, Wen Ling, Hong Ma, Hailong Huang & Yuan Lin. Prenatal diagnosis and pregnancy outcomes of 1492 fetuses with congenital heart disease: role of multidisciplinary-joint consultation in prenatal diagnosis. Scientific reports. 2020;10.
  53. Regitz-Zagrosek V, Roos-Hesselink JW, Bauersachs J, Blomström-Lundqvist C, Cífková R, De Bonis M, et al. 2018 ESC Guidelines for the management of cardiovascular diseases during pregnancy. European Heart Journal. 2018;39(34):3165-241. 10.1093/eurheartj/ehy340
  54. Chattopadhyay R, Olwell B, Bhagra CJ. Maternal cardiac disease in pregnancy. Obstetrics, Gynaecology and Reproductive Medicine. 2022;32(1):1-7.
  55. Healthcare Improvement Scotland. Pregnancy and Newborn Screening Standards. 2019 [cited 2023 Nov 01]; Available from: https://www.healthcareimprovementscotland.org/our_work/standards_and_guidelines/stnds/pregnancy_screening_standards.aspx.
  56. Higgins C, Agarwal U, Ramaraj R, Lim JSL. Early Fetal Cardiac Screening: Detection of Congenital Heart Disease. Cardiology in the Young. 2022;32 Suppl 1:S83.
  57. Public Health England. NHS Fetal Anomaly Screening Programme Congenital heart disease (CHD): information for parents. 2019 [cited 2019 Jun 11]; Available from: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/775164/Congenital_heart_disease_information_for_parents.pdf.
  58. British Congenital Cardiac Association Fetal Cardiology Standards Working Group. BCCA Fetal Cardiology Standards 2012.
  59. Wieland ML, Szostek JH, Wingo MT, Post JA, Mauck KF. Update in Outpatient General Internal Medicine: Practice-Changing Evidence Published in 2017. American Journal of Medicine. 2018;131(8):896-901. http://dx.doi.org/10.1016/j.amjmed.2018.01.046
  60. Scottish Government Digital Health and Care Directorate. Digital health and care strategy. 2021.
  61. Maggie Simpson, Emma Weingart, Jane Lewis, Toni Hardiman, Antonia Docherty, David Rogers, et al. The role of the nurse in adult congenital heart disease: past, present and future. British Journal of Cardiac Nursing. 2022.
  62. Beningfield A, Jones A. Peri-operative chest physiotherapy for paediatric cardiac patients: a systematic review and meta-analysis. Physiotherapy. 2018;104(3):251-63. https://dx.doi.org/10.1016/j.physio.2017.08.011
  63. Capone GT, Chicoine B, Bulova P, Stephens M, Hart S, Crissman B, et al. Co-occurring medical conditions in adults with Down syndrome: A systematic review toward the development of health care guidelines. American Journal of Medical Genetics, Part A. 2018;176(1):116-33. 
  64. Kawata M, Ohuchi H, Akagi T, Ichikawa H, Inai K, Kasahara S, et al. JCS 2022 Guideline on Management and Re-Interventional Therapy in Patients With Congenital Heart Disease Long-Term After Initial Repair. Circulation Journal. 2022;86(10):1591-690.
  65. Singal A, Sahu MK, Trilok Kumar G, Kumar A. Effect of energy- and/or protein-dense enteral feeding on postoperative outcomes of infant surgical patients with congenital cardiac disease: A systematic review and meta-analysis. Nutrition in Clinical Practice. 2022;37(3):555-66.
  66. TIER. Ready Steady Go Programme. 2022 [cited 2023 Feb 07]; Available from: https://www.readysteadygo.net/rsg.html.
  67. Constantine A, Tulloh RMR, Turquet R, Dimopoulos K, Moledina S. PAH-CHD: transition to adulthood. Journal of Congenital Cardiology. 2020;4 Suppl 1.
  68. Ricci P, Dimopoulos K, Bouchard M, Zhiya CC, Meira VC, Pool D, et al. Transition to adult care of young people with congenital heart disease: impact of a service on knowledge and self-care skills, and correlates of a successful transition. European heart journal Quality of care & clinical outcomes. 2023;15.
  69. Bollegala N, Kailas T, Marani H, Tabatabavakili S. A Systematic Review on Models of Care in Pediatric to Adult Transition of Care. Journal of the Canadian Association of Gastroenterology. 2019;2(Supplement 2):258-9.
  70. MBRRACE-UK. Saving Lives, Improving Mothers’ Care. 2022.
  71. MBRRACE UK. MBRRACE-UK Perinatal Mortality Surveillance Report UK Perinatal Deaths for Births from January to December 2019. 2021 [cited 18 July 2023]; Available from: https://www.npeu.ox.ac.uk/assets/downloads/mbrrace-uk/reports/perinatal-surveillance-report-2019/MBRRACE-UK_Perinatal_Surveillance_Report_2019_-_Final_v2.pdf.
  72. Joy E, Skorupskaite K, Balen A, Cauldwell M, Agarwal K, English K. Outcomes of fertility treatment in patients with cardiac disease: A multi-centre experience. European Heart Journal. 2021;42 Suppl 1:2897.
  73. Garcia Ropero A, Baskar S, Roos Hesselink JW, Girnius A, Zentner D, Swan L, et al. Pregnancy in Women With a Fontan Circulation: A Systematic Review of the Literature. Circulation Cardiovascular Quality & Outcomes. 2018;11(5):e004575.
  74. Network SOC. Pre Conception Counselling. 2023 [cited 2023 May 30]; Available from: https://www.socn.scot.nhs.uk/professionals/pre-conception-counselling/.
  75. Scottish Obstetrics Cardiology Network. Pre Conception Counselling. 2023 [cited 2023 Nov 01]; Available from: https://www.socn.scot.nhs.uk/professionals/pre-conception-counselling/.
  76. Diddle JW, Riley CM, Hom LA, Klugman D. Open Hearts: Sharing Data to Improve Outcomes in Congenital Heart Disease. Current Treatment Options in Pediatrics. 2020;6(4):263-73.
  77. World Health Organization. Palliative care. 2020 [cited 2023 Mar 21]; Available from: https://www.who.int/news-room/fact-sheets/detail/palliative-care.
  78. NHSScotland. Scottish Palliative Care Guidelines. 2022 [cited 2023 Nov 01]; Available from: https://www.palliativecareguidelines.scot.nhs.uk/.
  79. Schwerzmann M, Goossens E, Gallego P, Kovacs AH, Moons P, Swan L, et al. European Heart Journal - Recommendations for advance care planning in adults with congenital heart disease. 2020.
  80. Millerick Y. Supportive Palliative Care in Heart Failure Pumping Marvellous Foundation; 2022.