Hearing the news that your child has a life-shortening condition and is likely to die young is devastating. It’s an incredibly distressing and confusing time. These children have very complex and unpredictable conditions and often need round the clock care, seven days a week.
Families have to cope with the knowledge that their child will die before them, and daily life for the whole family can become challenging. Although there are many excellent services helping them, these families still have to fight to get the care and support they need.
We are here for every one of these children and their families, being a companion to parents on their journey so they know where to go for support and have the information to help them make the right choices about their child’s care. We are here to help children and their families access specialist children’s palliative care services, day and night, seven days a week, when and where they need it.
We want to help every child and family living with a life-limiting or life-threatening condition get the very best care and support they can so they can make the most of every moment together.
Our website contains a wealth of information and advice pages. We also offer the following to help families manage.
Helpline
If you have questions or are finding it hard to cope, please contact our Together for Families Helpline free on 0808 8088 100.
The helpline is open from 10am until 4pm, Monday to Friday. Outside of these hours and at weekends and Bank Holidays, you can leave a message on our answerphone and we will respond as soon as possible.
Calls are free for callers from a landline as well as specified mobile networks.
*This is not a crisis service. If you need to speak with someone urgently do call 999 or the Samaritans on 116 123.
Coronavirus Q&A
The Coronavirus pandemic has been an incredibly worrying time for families caring for a seriously ill child.
We have pulled together some information that we hope will help you to navigate the guidance that is available and have provided answers to some specific questions that have been asked by parents caring for a seriously ill child.
Family Group
The Together for Short Lives’ Family Group is a supportive community that allows families caring for a seriously ill child to connect, share and support one another.
Families say that being part of the community helps them feel less alone, and that they really value talking to other people who just ‘get it’.
This is aimed at families caring for a seriously ill child.
The helpline is available Monday to Friday.
This is available online via the Together for Short Lives website
Visit the Together For Short Lives website
This is available from 10am to 4pm.
The helpline is free to access.
Visit the Together For Short Lives website or email: helpline@togetherforshortlives.org.uk to get involved.
Email: helpline@togetherforshortlives.org.uk
