Rainbow Trust Children’s Charity has partnered with ECHO (Evelina Children’s Heart Organisation) with the aim of bridging the gap between the medical care that families receive in hospital and the social palliative care they receive in the home or community. Our Cardiac Support Worker works closely with both Rainbow Trust and ECHO to ensure that families whose children have life threatening and complex heart conditions receive the additional emotional and practical support they need.

About ECHO

Evelina Children’s Heart Organisation (ECHO) supports children and young people with heart conditions, who have had treatment or care under the Evelina London Children’s Hospital, and their families. Formed in 1984, they provide support and encouragement to the whole family. ECHO support members from across the UK and do so both within the hospital and within local communities and clinics.

Emotional support

  • Someone to talk to during and after your stay at Evelina London Children’s Hospital
  • Support during difficult appointments and with doctors emotional support for your child’s siblings bereavement support for the whole family.

“Leaving hospital with our daughter was something we had been waiting for, but when the time arrived I was afraid of having noone to talk to, the local ECHO volunteers were a lifeline.”

Practical support

  • Respite - spend time with your child both at hospital and at home so that you can take some time for yourself
  • Hospital support – support you whilst you are in hospital, attending appointments with you and being there for you to talk to when needed
  • Transport – helping you with transport to and from the hospital
  • Social events – keeping you updated with regular social and educational events, providing the opportunity to meet other families through the Rainbow Trust and ECHO networks.

Timeframe

Once you have joined ECHO and the Cardiac Support Worker has received your referral, we will contact you to arrange an assessment visit. This can take place in the hospital, your home, or wherever is convenient for you. Support will begin after we have completed this. We aim for the service to be responsive to your individual needs and your family needs.