Your Journey
Information and resources to help you along your journey from discharge to transition.
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Growing up using a Ventilator
A booklet written for young people and young adults that use a ventilator to support their breathing.
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Sibling Support
In this article, we list organisations that provide support for siblings of children with complex medical needs.
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10 things parents wish they’d known at the start of their journey
Parents and carers share what they wish they had known when their child with complex needs was born, diagnosed, or first discharged from hospital.
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Grants for families
A list of national organisations who provide grants for specialist equipment, therapies, and respite.
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Martha’s Rule
In this article, we look at ‘Martha’s Rule’ which will give patients and their families in England the legal right to a second opinion from senior medics in the same hospital if they are deteriorating rapidly and feel their concerns are being dismissed.
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Useful sources of information about benefits
A list of organisations who can provide information and advice about benefits
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Sleep, What Sleep?!
You are not alone if you struggle to help your child sleep through the night! In this article, we look at resources and organisations that may be able to help.
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SEND Local Offers in the UK
In this article we look at what the SEND 'Local Offer' is and provide links to each of the UK's council websites
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Parent Carer Trauma
In this article, Dr Joanna Griffin, a parent carer and Counselling Psychologist, discusses trauma, where you can get support, and the Parent Carer Trauma Working Group.
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Child to Parent Violence (CPV)
In this article, we look at what CPV is, whether it differs in children with disabilities, things you can do to address CPV, plus what other support is available to you.
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New Neonatal Care Bill – Pay and leave
This article gives details on the new Neonatal Care Bill and how it will offer more paid time off work to spend with your child.
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Getting started with Personal Health Budgets
An article explaining Personal Health Budgets (PHBs), advice from experienced parents, and a selection of helpful resources for parents who are considering getting a PHB, or need some help to get started.
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