This year, I was able to combine my role as an M4RD Clinical Ambassador with my position on the London School of Paediatrics Trainee’s Committee Education Subgroup to work together with Melissa Clasen, Training and Education Lead for M4RD, to put together a series of talks for Paediatric trainees in London as part of the online regional education programme focussing on the messages of M4RD and ‘Rare Disease 101’.
Paediatricians are often the first point of contact for patients with rare diseases as 81% present in childhood. They also provide continuity of care and are a central point of contact for families who are often under the care of multiple medical sub-specialties. There is noticeable overlap between the Royal College of Paediatrics and Child Health (RCPCH) Curriculum Domains and the modules of ‘Rare Disease 101’ (Figure 1), so Melissa and I put together our talks to comprehensively cover both in a way that was relevant to trainee Paediatricians.
The talks were entitled ‘The Diagnostic Odyssey’, ‘Growing Up with an Undiagnosed Illness’, ‘Transition to Adult Services’ and ‘Diagnosis, Communication and Mental Health’. Our speakers were a combination of patients, parents and professionals in order to deliver a diverse range of experiences from different points of view.Quantitative feedback for the talks was overwhelmingly positive, with a total of 32 responses across 4 sessions, of which 27 were from Paediatric trainees and 5 were from other doctors not in Paediatric training. (Figure 2). A word-cloud formulated from qualitative feedback reflects how the patient experience was absolutely central to all of the talks (Figure 3).
The next step will be to focus on the ‘Education’ aspect of both curricula by empowering Paediatric trainees to take the messages of M4RD and Rare Diseases 101 into their own hands by taking what they have learnt from this series of talks to educate colleagues. In my next year as an M4RD Clinical Ambassador I would like to be able to empower Paediatric trainees to complete the ‘Rare Diseases 101’ elearning modules and to arrange their own M4RD teaching sessions at their local hospitals.
Figure 1) A Comparison of ‘Rare Disease 101’ E-learning Modules with the RCPCH Curriculum ‘Key Capabilities’ for Paediatric Trainees
Figure 2) Quantitative Feedback for All Talks
Figure 3) A Word-Cloud Representation of Combined Qualitative Feedback for All Talks