Supporting young people with sickle cell as they transition to adult services
Young people living with sickle cell disease and their families came together for a transition workshop designed to help prepare them for the move from children’s to adult healthcare services.
Organised by the Inner Haemoglobinopathy Team at Woodfield Road Medical Centre, INW Division, the workshop gave young people the opportunity to meet members of the adult community team, learn more about managing their condition and build confidence for the next stage of their healthcare journey.
The event focused on important topics including medication management, understanding treatment options and accessing peer support. Young people took part in interactive activities and group discussions in a relaxed and welcoming environment, while parents and carers attended a separate session to learn how they can support their children as they become more independent and move into adult services.
The workshop brought together partners including the Sickle Cell Society and Roald Dahl’s Marvellous Children’s Charity, whose teams provided advice, information and signposted families to additional support services.
Adults living with sickle cell also attended to share their own experiences of transitioning into adult services. Their stories gave young people practical advice, reassurance and encouragement while helping them understand what to expect in the future.
The workshop is a great example of collaborative working, with NHS teams, charities and partner organisations coming together to provide joined-up care and support for young people and their families. By working together, the organisations are helping to ensure young people feel informed, supported and confident as they prepare for adult healthcare.
The event also reflected the Trust’s corporate values. Staff demonstrated Compassion by creating a welcoming and supportive environment, Inclusion by ensuring everyone had the opportunity to share their experiences, Empowerment by giving young people the knowledge and confidence to manage their health, and Accountability by working together with partner organisations to provide the best possible care and support.
Emma Savie-Disu, Roald Dahl Community Specialist Haemoglobinopathy Nurse for Children, said:
“It was a wonderful afternoon that provided valuable opportunities for informal learning and peer support. Transitioning to adult services can be a challenging time for young people with sickle cell disease and their families. Events like these help address their concerns and support them in preparing for the next stage of their care.”
The workshop received positive feedback from both young people and parents, with many saying they had gained new knowledge and valued meeting others with shared experiences.
One participant said:
“I learnt about Exjade and what it does”
Another added:
“I learnt that about the effects of different medicines and that there are many different types of sickle cell”
A third participant said:
“Yes, that the community provides a peer mentoring programme for people with sickle cell.”
One young person reflected on the importance of meeting others living with the condition, saying:
“It was nice being with other people like me”
Additional feedback included:
“I liked the experience”
“I really enjoyed today, I learned a lot and it nice to spend sometime with other people who have sickle cell”
“It was a nice and open space to learn new things about others’ experiences, and the support that the sickle cell society can provide."
The positive feedback highlights the importance of providing young people and their families with the knowledge, support and connections they need to make a successful transition into adult healthcare services.
