Specialist palliative and end of life care services for Children and Young People in West Yorkshire
Caring for a child with a life-threatening and life-limiting health condition can be challenging at any time of day. But when a crisis occurs in the middle of the night, it can be terrifying. Where do you turn when you can’t reach your GP or the child’s consultant?
The national ‘Ambitions for Palliative and End of Life Care: A national framework for local action”, state that:
“Every person at the end of life should have access to 24/7 services as needed as a matter of course. The distress of uncontrolled pain and symptoms cannot wait for ‘opening hours’. This is a necessary system-wide expectation and good end of life care cannot be achieved without it…”
In West Yorkshire, 24/7 Palliative End of Life Care (PEoLC) is available through a specialist nursing and medical advice line offer. The service is independently run by Martin House and Forget Me Not Children’s Hospice but currently only serves those supported by these hospices.
To understand the degree of unmet need in families that are not receiving hospice care, and make provision for it, the ICB is working with the hospices to deliver a six-month pilot of an out-of-hours advice line for families and professionals caring for a child with a life-threatening and life-limiting health condition.
Manned by specialist paediatric palliative care nurses and doctors based at Forget Me Not Children’s Hospice and Martin House, the advice line is available from 6pm to 8am weeknights and all weekend so families always have someone they can call on for advice, reassurance or signposting to appropriate services. We hope this increases patient choice about where they can access care and reduce avoidable hospital admissions.
Call 0300 102 1391.
If you are a professional calling for advice and support about a child, it’s important that you get explicit consent from the family before doing so, unless it’s an emergency.
Explicit consent means you have explained who you are calling and why and that the call will be documented in the child’s record on SystmOne. Are the family happy for the child’s record to be shared with other professionals, for example the GP and for the Out of Hours service to be able to see their child’s record on SystmOne?
If you obtain consent please document this in your records for the child.
You can use this referral form or scan this QR code.