Your Journey
Information and resources to help you along your journey from discharge to transition.
Search Resources
Filter Resources...
-
Communicating and Working with Practitioners with Rachel Wright
In this article, we look at some top tips on ways we can work better together, and how to structure an effective complaint
Read more
-
Growing up using a Ventilator
A booklet written for young people and young adults that use a ventilator to support their breathing.
Read more
-
Sibling Support
In this article, we list organisations that provide support for siblings of children with complex medical needs.
Read more
-
Grants for families
A list of national organisations who provide grants for specialist equipment, therapies, and respite.
Read more
-
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.
Read more
-
Useful sources of information about benefits
A list of organisations who can provide information and advice about benefits
Read more
-
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.
Read more
-
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.
Read more
-
In Your Area
In Your Area is a platform where parents and carers of children with complex needs can share their knowledge and find services and activities that help families like theirs.
Read more
-
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.
Read more
-
New Neonatal Care Bill – Pay and leave campaign
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.
Read more
-
Black History Month – Information, Stories, and Resources
In celebration of Black History Month, we’ve compiled stories of inspirational Black disabled people today and throughout history. We have included helpful organisations in the UK who can support Black children with complex health needs.
Read more
