Journal Article

8131 Patient navigator for the office for rare conditions: a progress update

Dinning, Claire, Ahmed, Faisal, Cairns, Beth, Dougan, Elizabeth, Rodie, Martina

2025

Overview

Why did you do this work?The Patient Navigator role was established as the first of its kind in Scotland in 2023, and continues to run to date. The Navigator provides holistic care that addresses physical, mental, financial and social needs of families. By listening to these families, the Navigator can identify barriers to care and offer guidance that is tailored to each family’s journey, and signpost to connect families to relevant healthcare professionals, support groups and third sector organisations for education, research, housing and financial advice.The Navigator collaborated with the health board, attending acute wards and outpatient clinics, raising awareness of rare conditions amongst healthcare professionals. Referrals from various sectors were made to ensure families received timely access to information and resources. Additionally, the role focused on service improvement by gathering feedback from families and liaising with services to enhance the patient experience. Continuous development of the Patient Navigator role aimed to bridge gaps in care, support, and services for families affected by rare conditions. We aimed to show that this role is busy and effective, and should be considered by other centres caring for those with rare conditions.What did you do?The Navigators patient logs were reviewed, including number of contacts families had with the navigator, reasons for contacting and what information was given by the Navigator. Feedback questionnaires were offered to families and also reviewed.What did you find?From the origin of the role, the Navigator has had 560 interactions with 201 families, an increase from 369 interactions with 140 families in its first 12 months. Contact methods ranged from face to face, email or phone depending on the family needs. The number of contacts with each family ranged from 1-24, with a median of 2 contacts per family. The patients ranged from neonates to adults, with a mean age of 3.6 years. Of the 201 patients that had contact with the navigator, 28 are undiagnosed. A wide variety of rare conditions were encountered, prevalence ranging from 1 in 2000, to one of a few world-wide.Issues managed included offering general support and signposting to support groups, linking to healthcare staff and psychological support, assisting with seeking funding and educational support, linking with other families and end of life care. Resources developed included holistic needs assessment, contact log of healthcare professionals, database for resources for information for families on finance, housing, activities, mental health and wellbeing, refugees, sibling support and charity contacts.Feedback questionnaires reported that 96% of respondents felt the information received was helpful and 100% reported that they knew who to contact if further support was needed.What does it mean?The Navigator has proved a busy and effective role with excellent feedback. Families often contacted the Navigator feeling lost and helpless, and were offered diverse support. This role should be considered by other centres caring for those affected by rare conditions.

• Publisher: BMJ Publishing Group LTD
• Subject: Access to information / Educational Finance / Family Role / Feedback / Health care / Holistic Evaluation / Housing / Medical personnel / Needs Assessment / Neonates / Patients / Questionnaires / Refugees / Social Support Groups / Support groups / Well being