Life Limiting Conditions

Support for Parent Carers of seriously/terminally ill children & bereavement support

Receiving news that your child has a life-threating or terminal illness is one of the most stressful and traumatic experience a parent can have.  Obviously, your focus will be on caring for your child, but it is also important that you seek support for yourself. 

See our emotional wellbeing section for more generic local services that can support you to look after you as you care for your child.    

The following organisations specifically provide support for Parent Carers caring for a seriously or terminally ill child. 

Young Lives vs Cancer – Information, advice and financial support for families when a child or young person has cancer.  Telephone: 0300 330 0803 www.younglivesvscancer.org.uk

Rainbow Trust – 1:1 family support for families with a seriously ill child aged 0 – 18.  Support includes listening  and emotional support, driving to appointments, explaining conditions and treatments, and organising activities for sick children and their families. Families can refer themselves: https://www.rainbowtrust.org.uk/

Together for short lives – Support for anyone who looks after or knows a child up to the age of 25 who is expected to have a short life.  Helpline and live web chat services provide listening support and information to help find services you need in your local area.  They can also help access legal advice if you have a specific problem which requires it.  Helpline 0808 808 100 open Monday to Friday 10am – 4pm. www.togetherforshortlives.org.uk 

The ‘find a service’ section is particularly useful for finding grant or wish-making charities and for condition-specific support or helplines: https://www.togetherforshortlives.org.uk/get-support/supporting-you/find-a-service/

Financial Support

Disability Living Allowance – There is a quicker application process for parents of children who have been diagnosed with a terminal illness and aren’t expected to live more than 6 months.  More information can be found on the Citizens Advice website: https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/disability-living-allowance/help-with-your-dla-claim/claiming-dla-terminally-ill/