A Place to Breathe

I was personally moved by this first SEND Families session. You could hear the pain, worry and pressure behind some of the experiences shared, but families were not asking for pity. They wanted understanding, dignity and respect, and for their children to be seen as people first rather than simply as a diagnosis, condition or number. Families also spoke about wanting greater inclusion in ordinary community life. Some described feeling excluded from events or spaces because of assumptions about bringing a child with additional needs. They want their families to be invited, welcomed and appropriately accommodated rather than separated. The familiar setting and Sunday 4:30pm timing worked particularly well and helped people feel comfortable from the outset. Going forward, we would like to retain this informal, family-led environment while also inviting an appropriate SEND/NHS or system representative who can listen and help answer some of the practical questions families have about navigating services and accessing support, without taking over the space. The session reinforced the value of A Place to Breathe: somewhere families can speak honestly, connect with others who understand their experiences and help shape the support they need. Those present wanted the gathering to continue, and we agreed to meet again next month. The session felt warm, open and positive, particularly for a first SEND Families gathering. Families from different circumstances attended, some with children, including families at different stages of navigating SEND support, and others without their children, allowing them some time away from their caring responsibilities to connect with other parents and families. People appeared comfortable speaking freely and honestly about their experiences. The setting was well received, and there was a clear appetite for the space to continue. By the end of the session, we collectively agreed that we would meet again next month. Several recurring themes emerged: difficulty navigating SEND and NHS systems; lack of clear, accessible information alongside information overload; inconsistent care provision and frequent changes of carers, making it difficult for children to build trusted relationships; concerns about empathy and the quality of care; and families feeling that their children can sometimes be seen as a condition or a number rather than as individuals. Financial pressure was also significant. Families described the strain of having to work to maintain their household while also wanting to provide more of their child’s care themselves. Available financial support was felt by some to be insufficient to make full-time caring a realistic option, creating a difficult balance between earning, caring and worrying about the quality of external care. Trust and safety in care were also raised. One parent shared a previous experience in which their daughter had reportedly been assaulted while in a care setting, and described the continuing worry that something similar could happen again. Parents also spoke about having to educate themselves about their child’s condition so they can advocate effectively and provide better support. There was a strong desire for better system navigation, more consistent and person-centred care, stronger NHS support, and greater understanding from families and the wider community.