RHO Blog 3 – July  

On Saturday 19th July, we held our first face-to-face event for patients and families. This ‘co-production day’ welcomed North-East London patients aged 12-24 (pre- and post- transition) patients and parents. Through focus groups, we sought to understand experiences of and current worries around transition, the psychological impact of this change, and the resources patients and families still need.   

An introductory presentation by Dr Cecy Ng outlined what Healthcare Transition means, what this currently looks like, and why we need their input to make it better, followed by a panel discussion answering their questions. Throughout the day, participants were invited to use post-its to anonymously ask questions and share their thoughts on what ‘good transition’ looks like.   

 

After splitting into groups – (1) young patients; (2) post-transition patients and mentors; and (3) parents/carers – the first focus group session addressed their current worries/concerns. For example, one common anxiety for young people is not having a parent there, and being worried about making decisions alone, having to speak up for themselves, and having to remember everything.  

The groups then discussed strategies for resilience and service improvement. There were many constructive reflections, and this fed into our final session, where we focused on resource development and brainstormed some initial ideas for co-designed informative materials. Ideas for mood-board-like apps, charters of entitlements, and short-form video content, will be developed further through a specific co-creation working group, led by patients themselves.   

Overall, it is clear that there is wide variation in experiences of transition. Young people can feel isolated by peers’ lack of understanding of their condition, and post-transition patients noticed a significant difference in the way they are treated in child and adult services. Parents wanted simplified language, better signposting, and a focus on confidence-building and self-advocacy.   

Activities such as ‘red cell bingo’, and the chance to look at blood cells under a microscope, rounded out the day. As a reward for completing the game, participants were entered into a much-enjoyed prize draw!   

We were joined by several organisations offering patient support, including the Roald Dahl charity, Over the Wall, and COMPASS UK. It was wonderful to have this opportunity to signpost their work to patients and to collaborate.  

Feedback showed that what participants enjoyed most was meeting other people, interacting face-to-face and being able to share their experiences. Considerations for our next event will be organising it on a holiday weekday rather than Saturday, trying a different location, having a shorter day, and having more activities.   

Next steps:   

• We will be running another co-production day on Tuesday 26th August, to gain further patients’ insights (utilising the feedback from July’s event)  

• We will shortly be opening sign-ups to our co-creation group to develop informative resources – look out for this on our comms channels!   

• Psychologist Dr Kofi Anie will be building on the initial findings of these focus groups to develop a psychological needs assessment. Further online focus groups around emotional wellbeing will be held in October.  

• Our online workshop series continues in September on the topic of education and future planning. 

 

Our Steering Group has been joined by 3 parent representatives and one patient representative. Their insights have been invaluable to our research planning. We welcome more patients to sign-up here: https://bit.ly/RHOpatient-rep