“…This is the case in Tina's story where she expresses that 'I will never recover, there is no escape from the constant bereavement'. While several studies have established that parents of children with a disability, particularly mothers experience more stress, higher levels of anxiety (Esdaile and Greenwood, 2003;Estes et al, 2009;Seymour et al, 2013) increased sadness, a sense of denial and guilt (Ergu¨n and Ertem, 2012), and there is a need for health and social care professionals to proactively support families and listen to and value what they say and their knowledge of their child as this is essential to an effective working relationship (Blacher et al, 2005;Keen, 2007;Tomasello et al, 2010). Within Tina's story, she often felt isolated and alone and left feeling that the professionals avoided addressing the issue of her coping 'it surprised me that nobody could see my pain'.…”