RHO Blog 1: April 2025

Welcome to this new blog, where we will share updates on the RHO Transitions Project – a collaboration between the Sickle Cell Society and North-East London and Essex (NEL-E) Haemoglobinopathies Coordinating Centres (HCC), funded by NHS RHO (Race and Health Observatory) – who work to identify and tackle ethnic inequalities in health and care.

This research project aims to develop a standardised, person-centred and age-appropriate transition framework for sickle cell patients. Working together with patients and parents in North-East London through co-production and community engagement, we seek to understand young patient’s needs – including mental health support, advocacy skills, and better resources – and provide evidence-based recommendations for network-wide NHS care.

Transition refers to a planned process of supporting young people to move from paediatric to adults’ services. It spans early adolescence (12-13 years) into early adulthood (24-26 years). It is a hugely complex process, involving a change of not only the healthcare services and staff surrounding a patient, but their own responsibility for and knowledge of their condition. Successful transition supports young people to develop independence and self-advocacy skills to manage their own health and navigate the healthcare system. Adolescence is a time of huge change, and life-long health-related habits will be formed in this period. Transition has a significant impact on both physical health and emotional well-being, and patient needs vary widely.

We know already – from The APPG Report : ‘No-One’s Listening’ ,  NCEPOD 2023 “The Inbetweeners Report” and many other studies – that healthcare transition urgently needs improvement. There is a lack of standardised processes and clear resources, reinforced by poor communication between different services.

Work to improve sickle cell transition has already begun in NEL, with the BHRUT (Barking, Havering and Redbridge University Hospitals) workshop programme and the peer mentoring scheme. This project will build on this, by conducting a literature review, developing a series of educational workshops, hosting face-to-face co-production events, evaluating access to peer support, and assessing patients’ psychological needs.

What have we done so far?

Our first online Transition Workshop took place on Saturday 29^th March. We were joined by sickle cell patients from NEL aged 12-14 years old. This session gave an introduction to healthcare transition and sickle cell disease in an easily understood, age-appropriate format, delivered by one of our paediatric haematologists: Dr Cecy Ng. Using interactive word clouds and questionnaires, we could see that knowledge of the condition varies patient-to-patient, and we gave space for young people to share their worries, their experiences and ask their own questions.

We were also joined by Dr Claudine Matthews, who spoke about dietary considerations, and how good nutrition can help manage sickle cell symptoms.

We finished with a much-enjoyed quiz and raffle draw. Our feedback was hugely positive – 100% of participants completely agreed that the information was useful to them, that they learnt something new, and the most frequently used word was ‘fun’! Participants were engaged throughout, speaking up and using the chat to ask and answer questions.

What work will we be doing in the next few months?

• Further educational workshops – our series of 6 online transition workshops will continue in June, on the topic of self-advocacy and self-management skills, led by nurse Debbie Omodele. We will be joined by a post-transition patient who can share their experience and answer young patients’ questions about the process.
• Planning a co-production event – in July, we will be hosting a large, in-person event for patients, parents, and healthcare professionals. It will be a space to learn what patients and families need in the transition process, as well as offering them information, advice and support.

Upcoming events to highlight:

1. Online workshop: Saturday 7^th June 2025
2. Co-production event on 19^th July 2025 :Join us for a day of activities and learning on Saturday 19th July! At this co-production event for all North-East London Sickle Cell patients (aged 12-24) and parents, we will share information from healthcare professionals and charities on the transition from children’s to adult’s services. Even more importantly, we want to hear from you. Through workshops and focus groups, we want to learn more about what patients need, how to better support young people’s mental health, and co-create informative resources. Your voices can help shape transition care.Sign up at bit.ly/levelup-day
3. We are looking for a parent and a patient (18 – 24 years) representative to join our project! Express your interest here:
   • Parent Representative Sign-Up: ly/RHOparent-rep
   • Patient Representative (aged 18-24) Sign-Up: ly/RHOpatient-rep

So, watch this space for more updates over the next year!