Emily Marsden's eight-year-old daughter Daisy was born with Rett Syndrome, a rare genetic condition, that requires round-the-clock specialist nursing care. But she is only provided with help Monday to Friday between 9am to 5pm.
Alison Leary, chair of healthcare and workforce modelling at London South Bank University said:"I think district nursing is quite undervalued.
Emily wants to enjoy every precious moment she has left with Daisy. But that is almost impossible when she does not get the support every mother of a terminally ill child should receive.Andy Fletcher, chief executive of Together for Short Lives said:"These children can have very complex and unpredictable conditions and often need 24-hour care, seven days a week.
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