Caring for a child
With a life-limiting illness
Caring for a child or young adult with a life-limiting illness
Caring for a child with a life-limiting illness is tremendously challenging and can feel completely overwhelming at times, but there is support available to help both your child and you as a carer.
You will find more information on the caring page, regarding a carer's assessment, general support providers and financial assistance you may be entitled to.
Below you will find useful contacts of support organisations that focus specifically on caring for children and to help ensure that you can maintain the best quality of life possible, despite the difficult challenges you have to face. You may also want to visit the coping with grief - adults page on this site, which details bereavement organisations that help adults and families with the trauma of losing or having lost a child.
Local Authorities
Children's Services Leicester City
0116 454 1004
Children’s Service’s Leicestershire County Council
0116 232 3232
Rutland County Council - Children's Social Care
01572 722577
General Support
Diana Community Children’s Service
Provides a variety of services to support children and young people up to 18 years old with nursing needs within the community setting. Services include acute and ongoing care, continuing care, end of life care, Macmillan nursing, respiratory physiotherapy, child and family support, multi-cultural support and training.
0116 295 5080
LOROS bereavement and counselling service
Offering one to one and group counselling and support.
0116 231 3771
( provides support to both adults and children)
Let's Talk
Psychological care, offers clinics in many places across the City, please state where you would prefer to be seen. Contact GP for referral or complete an online self-referral form
Patients living in Leicestershire and Rutland can contact the service by calling 01509 561100 - www.nottinghamshirehealthcare.nhs.uk/leicestershire-county-and-rutland-service
Patients living in Leicester City can access it by calling 0116 292 7010 or going online - www.mychoice.leicester.gov.uk/Services/2597/Lets-Talk-Wellbeing
Maggie's Centres
Emotional support for people with cancer and their families (meetings and also online support), and those bereaved through cancer (groups in Nottingham). Groups and individual support.
My adult is still my child
Information for families transitioning into adult services
Rainbow community services
We care for babies, children and young people who won’t live as long as you or I.
Our facilities and services are second-to-none, and our specialist staff are exceptional. Which means we can give the best care, not just when it’s needed, but wherever it’s needed across the East Midlands, be that in our hospice, in hospital or at home.
The Shama Centre
Offers free bereavement counselling support for men women and families with special emphasis on minority ethnic communities. They have multi-lingual staff and a 'Bereavement to Achievement' scheme for women.
0116 262 5876 to book a confidential counselling session
0116 251 4747 for general enquiries