Interview with a community activist conducted by a Programmes Manager (VCS Neighbourhoods).
What led you to become involved with local voluntary organisations?
I used to be part of a local parents’ forum for parent-carers of disabled children and young people. Spending time in hospitals and seeing how families with disabled children are treated, I felt inspired to make a difference by helping them have a voice. This led me to become involved with a local charity that supports disabled children, young people, and their families. Through my work there, I was invited to join a leadership group connected to Neighborhood forums.
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Tell us about your various voluntary roles within the community.
I am a trustee for a local charity and serve as a leadership group representative for two Neighborhoods. Additionally, I provide practical support to parents who may be struggling, such as assisting with applications for support or care plans. This isn’t an official role—it’s something I do because I love helping others.
I am also a single parent and caregiver for my three children. With different health challenges sickle cell disease and type 1 diabetes.
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How do you balance your roles with your caregiving responsibilities, and where do you find support?
At home, I manage many roles—cook, cleaner, secretary, and counsellor. While it’s challenging, I find satisfaction in making a difference and putting smiles on people’s faces. I have a strong network of support from local professionals and organisations. These connections help me feel less isolated, and their support is invaluable.
For my own wellbeing, I enjoy attending community cookery classes. These sessions give me a chance to relax and take a break from my responsibilities.
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Can you tell us more about your children and how you manage their health?
My children rely on monthly blood transfusions to manage their condition, which significantly improves their quality of life. Around a week before their transfusions, they experience fatigue and pain, requiring additional care.
I’ve explored funding for home adaptations to improve their quality of life, such as a sofa bed to allow them to rest downstairs, but have not been successful. Despite the challenges, I continue to find ways to support them, often with help from a youth worker who has been instrumental in assisting with resources and emotional support.
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What challenges have you faced in coping with sickle cell disease?
One major issue is the lack of awareness and systemic inequities associated with sickle cell disease. Patients with this condition must pay for prescriptions, which adds financial strain, especially for those unable to work due to health challenges. Additionally, funding opportunities for sickle cell-related support are extremely limited, and the transition from pediatric to adult care is often inadequate.
I’ve advocated for better resources and awareness, including writing a proposal for a community hydrotherapy pool, which could benefit many people with chronic conditions. However, I have faced significant barriers in getting my concerns heard by local decision-makers.
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Why do you support the Neighborhood forums programme?
I believe in the importance of community connection. Loneliness is a silent issue, and Neighbourhood forums help bring people together to connect, stay healthy, and learn about available support and activities.
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What do you enjoy about living in your area?
Compared with other boroughs, I find the area culturally diverse and supportive, especially in terms of services for children. The community is friendly, and neighbours look out for each other. It’s a place where people genuinely connect and support one another.
Find out more about our work on the City and Hackney Neighbourhoods.