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I absolutely agree. During the time I spent in the hospice movement, I learnt that those final few weeks are incredibly distressing. None of us can possibly imagine what it is like unless we have been through it. The support for the parents and the wider family is what makes much of what happens in the children’s hospice movement such a success.
The care must be age appropriate—suitable for a child’s particular stage of development—and administered by people who have the exact skills needed to get the person through their care pathway. A comprehensive local children’s palliative care service spans health, social care and education. Joint commissioning is vital and should be accessible 24/7, 365 days a year, from diagnosis to bereavement. As a result of the complexity and severity of patients’ needs, the transition from children or youth services to adult services can be particularly daunting.