RHO Blog 7 – November – December  

Despite the cold weather, this winter period has been a busy time for the Transition project!   

Co-creation Group 

On Saturday 22nd November, we held our first in-person meeting for the co-creation group; NEL Sickle Cell patients aged 12-24 are invited to a series of group sessions where we will co-design resources to support transition.   

We firstly looked at the resources currently available in NEL, including a ‘Transitioning to Adult Services’ Guide created by Transition Nurse Emma Savie-Disu. The booklet covers everything from treatment options, advice on moving away from home for university, support services, and pain management strategies. It will soon be available from NEL hospitals. We discussed how useful and practical this format (including ebook/online flipbook) would be for them, and what information they would most like to be included. We also looked at the Ready, Steady, Go questionnaires, and a new scoring tool designed by Barts Health (currently in its pilot stage). This tool uses a score from 1-10 instead of a tickbox, and is separately scored by both the patient themselves and by their clinician. By gathering patent feedback on these resources early in their development, they can be shaped by those who use them most, improving their effectiveness and utility, and building engagement with healthcare transformation.  

In this initial session we also started drafting ideas for a patient-centred digital resource, whether website or app. There were lots of topics young people wanted to be included – possible complications, when to go to hospital, health and lifestyle advice, sex-specific information (e.g. menstruation), an events calendar, and more – and they suggested it should be in an engaging, animated, and interactive format.

We continued to build on these things in our next session (online) in early December. Together, we started designing storyboards for potential animations (e.g. ‘What is transition?’ or ‘The first time in adult A&E’). Post-transition patients shared their experiences; they discussed what they would have wanted to know at that time, or how they would advise a younger patient who is preparing for transition now.  

You can sign up to join future sessions here: bit.ly/co-creationgroup    

Winter Fun Day! 

At the end of November, we organised an exciting day out for young people, to play digital darts at Gravity Max and share a meal together. A point of feedback we have gathered over many of our sessions has been that young people would like more social events, where they can meet others with Sickle Cell and simply have fun. We invited both those on the mentoring programme, and those who are waiting to be matched up with a mentor. This allowed for rich discussion about mentoring and peer support. We were gratefully joined by both HCPs and mentors so that young people could get their questions answered.  

Staff photo at our Winter Fun Day 

Upcoming work 

In the new year, we will be pulling together our preliminary findings.  

We would also like to welcome Dr Fred Piel to our project team! He will be supporting our analysis and write-up, and we are greatly looking forward to working with him.