Support group for parents and carers of children with sickle cell and thalassemia flourishes in Wandsworth

In a bid to provide crucial support and create a sense of community, a support group for parents and carers of children with sickle cell and thalassemia has been established in Wandsworth. The primary aim of this initiative is to offer a platform where parents and carers can find solace, reduce feelings of isolation, and extend emotional support to one another.

The project, spearheaded by a Paediatric Haemoglobinopathy Specialist Nurse Barbara Bailey along with dedicated service users who are parents and/or carers themselves, has gained significant momentum since it was set up. Drawing from the success of a previous support group that unfortunately ceased due to venue constraints, the need for such a resource became even more apparent during the challenging times of the COVID-19 pandemic.

Initial discussions within the team centred on the re-establishing of the group, focusing initially on children and there are plans in the future for expanding to include adults. The group, comprising passionate individuals committed to supporting fellow parents and caregivers, has been running for several months. These gatherings have welcomed guest speakers from institutions such as the Sickle Cell Society and St Georges Hospital, including youth workers and a massage therapist.

Furthermore, plans are underway to incorporate the expertise of paediatric and adult clinical psychologists from St Georges Hospital in future meetings, highlighting the group's dedication to providing holistic support.

In addition to formal meetings, the creation of WhatsApp groups has facilitated ongoing communication among parents and children alike. Parents actively encourage each other to participate, recognising the importance of collective support. Childrens conversations are strictly monitored by their parents. Feedback from participants highlights the value of such initiatives, with one parent expressing their hope for the group's continuity.

Feedback from parents include:

“The staff are so kind and respectful”, “It was great to meet with and connect with parents and children”, “Amazing information and support for my child and myself”.

Benson Aderibigbe, Clinical Lead – Haemoglobinopathy (South West Division) said  "I trust my Haemoglobinopathy team: we work together to improve patient's quality of life, and this parents' support group has been a great success for the community". 

Watch the video that features both parents and nurses talking about the importance of the support group.

“This group has been a moral boost for both staff and the service users. This disease can be quite isolating for the patient and family members alike. Being able to come together in a safe space to share experiences is invaluable in supporting the health and wellbeing of this client group. I am very proud of what the team have accomplished and how supportive of the project the parents and service users have been. Long may it continue, and I look forward to it being expanded to serve the adult side of this client group.” said Emma Fosuhene, Richmond & Wandsworth Clinical Service Manager

The Head of Clinical Services and the project lead Shelly Heffernan said “The Haemoglobinopathy team are an amazing team who always work closely with their service users and are a great example for others to follow ,as they truly put their clients view at the centre of all their decision making. We are extremely proud of what they have achieved as they are really making a difference.”

The group's impact extends beyond its immediate members, with parents promoting its benefits amongst their friends and family. This growing community promises to serve as a lifeline for families navigating the complexities of haemoglobinopathies, offering not just support but also a sense of belonging.

As the group continues to grow, its mission remains unwavering: to provide a safe haven where parents and carers can find strength in solidarity, share experiences, and navigate the journey of caring for children with haemoglobinopathies together.