Nascot Lawn case highlights poor understanding of 24/7 care needs

Posted on the 9th February 2018

This week a group of determined parents took their case to the High Court to reverse the decision to close Nascot Lawn.

The Watford respite centre is a vital source of support for families caring for the most medically complex children and closing this service highlighted the burden of care that parents provide 24/7 and why respite care is vital. More worryingly however, it highlighted a deep lack of understanding among decision makers of the medically complex nursing care that many parents are providing for their child at home. Care that can include procedures such as suction to keep their child’s airway clear, giving oxygen and feeding via a tube. This lack of understanding is alarming.

Even now, with a push for care at home being the best option for children and young people and their families, and the reliance on parents being trained in the complex procedures needed to keep their child alive, those making decisions on the support that these parents receive do not seem to grasp the immense emotional, financial and practical impact this can have families.

Over the last year, we have highlighted this extensively through the #notanurse_but campaign – video diaries from parents have been viewed over 180,000 times, and with over 2,000 followers, yet we are disappointed that there is still a fundamental lack of understanding of the impact of 24/7 care on parents.

Watch Leanne's #notanurse_but video diary series for insight into the life and challenges caring for a child with exceptional health needs at home.

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