RHO Transition project – spring workshops and events
RHO Blog 2: May-June
We’ve been busy at work over the last few months.
Online Workshops
On Saturday 7th June, we held our second online workshop. NEL patients aged 14-16 joined us for a session focused on self-management and advocacy skills. An important part of the transition process is learning to be knowledgeable about your own health and confident in making health decisions.
We can see from our introductory questionnaire (mentimeter) that transition is different for every patient. Hospital visits might be boring and neutral, or scary; some already talk to doctors themselves, others feel better with their parents around. While trying to standardise transition care, we should stay mindful of how patient needs vary.
Across patients, common worries about moving to adult services are: being alone, doctors not listening, decision-making, and how different it will be. A good transition, on the other hand, looked like feeling welcome and knowing what to expect.
In her presentation, nurse Debbie Omodele explained why taking medication matters, how to recognise and manage symptoms like pain and anaemia, and did a much-enjoyed myth-busting quiz. A talk was also given by post-transition patient and mentor Taiwo, on building communication skills, asking questions, and where to find support – reminding patients that they are not alone. They practiced real-life scenarios and were able to ask for advice (e.g. about reasonable adjustments in school, like extra exam time).
Our feedback was good, with an average rating of 4.5 stars – patients found it was “awesome and educative,” “engaging and helpful,” and appreciated being able to give feedback throughout.
Based on feedback, we will add breaks, continue with the online format, and try weekday evenings instead of Saturday.
Patient and Parent Representatives
We are looking for a patient (aged 18-24) and a parent (of a young person with Sickle Cell aged 12-16) representative to join our research working group. By joining our bi-monthly Steering Group meetings, these representatives will share their lived experience of transition to inform our research plans, and feedback their suggestions.
Expressions of interest are still open for the patient representative role; sign up at https://bit.ly/RHOpatient-rep
Co-Production Event
Our next focus is the co-production event on Saturday 19th July – the ‘Level Up! Transition Day’. At this event for all North-East London Sickle Cell patients (aged 12-24) and parents, we will share information about the transition process from healthcare professionals and other charities. Even more importantly, we want to hear from patients and their families. Through focus groups, we will learn what patients need, barriers to a good transition, and how to better support young people’s mental health. Through interactive workshops, we will also co-create informative resources.
Sign up here: https://bit.ly/levelup-day
Join us again next month, to hear the feedback from our face-to-face event, and an update on the literature review of transition models across chronic health conditions.
