RHO Blog 5 – September 99

Online transition workshops 

This month we held our third online transition workshop, on the subject of future planning and educational support. This workshop was for patients aged 15-18. Based on prior feedback and learning what has worked well elsewhere in NEL, we held this workshop on a weekday after school (5-6:30pm). 

Transition takes place at a time of multitudinous life changes and increasing independence. We wanted to support young people through these next steps, in the context of managing a chronic condition and health considerations.  

Mentor and Future Focus facilitator Aizenosa (from ACSGiveBlood) gave a talk on how to plan for the future, considering different post-school options like university or apprenticeships. Mentor Taiwo spoke about educational rights and reasonable adjustments (such as extra exam time, rest breaks, and flexible PE). She discussed entitlements to SEN support like EHCPs and DSAs in education, and rights in the workplace, as well as practical advice. We were also joined by a post-transition patient, Esther, who shared her experiences of university with Sickle Cell – highlighting important considerations (such as requesting accessible accommodation or extensions) and addressing anxieties about moving away from home/family. It was a great opportunity for young people to ask questions and know what to expect from change in the future. Each speaker pointed out the need to advocate for yourself throughout transition.

Participants found the workshop to be very informative. One wrote: “[I am] very grateful to see other people living with sickle cell and see how well they’re doing in life”, and another said that the best part was “being able to learn about how other people learnt to manage their sickle cell in their unique and different ways which I think would help me in the future when I go on to possibly leave my home too for my education.” 

Co-creation group! 

We have opened sign-ups to our co-creation group, for pre- and post- transition patients. Building on ideas from the Summer co-production days, we aim to co-design some potential transition resources through this working group.  

“We are inviting young people with Sickle Cell to participate in a co-creation group, helping us design ‘prototype’ resources (such as app, websites, videos, leaflets etc.) informing patients and families about the transition from children’s to adult’s services.  

What would help make the transition process easier? What resources do you wish you had during your transition, and think patients should have now? We want to learn these things from you, and get creative!  

If you are interested, please fill out the form here: bit.ly/co-creationgroup“ 

Emotional wellbeing 

Building on the insights from our face-to-face focus groups with young people, Dr Kofi Anie will be hosting some online group sessions around emotional wellbeing and the psychological support that young people need.  

The first session, for NEL patients aged 14-21, will be on Friday 10th October at 5-6pm. If you are interested, please sign up here: bit.ly/groupscyp