There are currently 49,000 children and young people with complex healthcare needs in the UK. Though not a large group, the complexity of needs and severity of conditions has repercussions for parents. For example, we are often isolated because we have children who are very different and have fewer opportunities for interaction with parents and carers of children with similar needs.
Parent Voices Count! recognises the need to connect parents and carers with similar circumstances and the strength and shared voice that comes from these connections.
Given the complex needs of our children and the fact that they are living longer, this presents the healthcare system with new and unprecedented challenges. Healthcare settings need to recognise this alongside the massive upheaval that diagnosis, treatment and care has on our children and their families’ lives. This is why, it makes sense for healthcare settings and professionals to nurture real partnerships with parents and carers, to get to know us, our backgrounds, what we value and care about, as well as the significance of our particular expertise, as expert parents and carers.
Parent Voices Count! recognises a real need for the voices, experiences and perspectives of parents and carers to be listened to and included in decision-making, as well as contribute to the co-production of existing and new services to meet the changing needs of our children, their families and loved ones.
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