RHO Blog 6 – October 

Emotional wellbeing 

In October, we held the first online group session around psychological wellbeing, led by Dr Kofi Anie. With young people aged 14-21, we discussed how feelings of anxiety, isolation, and stress come up around Sickle Cell (for example, from not being able to take part in an activity, or from being treated differently to other peers) and strategies for coping. Questions around what kind of emotional support would make the biggest difference, and how this can be provided in a practical way, were discussed.  

Mentoring and Peer Support 

At Queens Hospital, we collaborated with the BHRUT haematology team to host an event for young people to meet each other, and find out more about the NEL mentoring programme and treatment options like gene therapy, chaired by Dr Paul Greaves. Using a survey and interactive Padlet board, we used this session to assess knowledge of and barriers to peer support on offer, and what further support is needed for patients. The lead mentors explained what peer mentoring is, why it works and how to get involved. There was space to meet the mentors and ask lots of questions, online or in-person. More information about the peer mentoring is available on this video which was shown: https://youtu.be/cbVKEVyJYCg  

Dr Sarah Charrot also gave a presentation on gene therapy, including what it is, the risks, the limitations, as well as the eligibility criteria. The Q&A gave young people and parents the opportunity to ask questions about the treatment itself and what it entails. If you would like to access a video of similar talk from Barts Health NHS Trust, please email bartshealth.hcc@nhs.net.  

Patient Workshops 

The paediatric team at Queen’s Hospital also hosted a well-attended workshop on 29 October 2025, for young people preparing for transition and their parents. Participants engaged in an interactive game created by Ibnath Hussain (NEL Haemoglobinopathy Pharmacist), which helped them learn about common medications covering their uses, side effects, and dosing. In addition, the young people received education on managing their condition, accessing support programmes such as peer mentoring, and most importantly, providing peer support to one another. A parallel session was held for parents and carers hosted by Dr Angella Fosuaah, offering them an opportunity to explore strategies for supporting their children who are preparing for transition or have recently transferred care.