Little Havens is currently leading the UK’s first pilot of a dedicated Electronic Palliative Care Coordination System (EPaCCS) for babies, children and young people with life-limiting or life-threatening conditions in the Mid and South Essex area.
Hosted on SystmOne, this secure register ensures that all professionals involved in a child’s care have access to consistent, up-to-date information—helping to coordinate care, reduce delays, and improve outcomes across settings.
Children and young people aged 0–18, including those transitioning to adult services, with a life-limiting or life-threatening condition that may benefit from specialist paediatric palliative care. For the duration of the pilot, they must also live in the Mid and South Essex NHS catchment area.
Referrals should include input or evidence from a specialist palliative care professional where possible.
*Consent must be gained from the family before making a referral
Any healthcare professional involved in a child’s care can refer them to this register, with the family’s consent.
Families wishing to be referred and included in this register, please speak to someone directly involved in your child’s care or contact Little Havens at lhinfo@havenshospices.org.uk
Referrals are reviewed by our Care Coordination Team, who will add the child to the register and communicate with the relevant services.
No EPaCCs is separate to the Little Havens caseload, so a family can be accessing support from the hospice and not be on the register, or vice versa if that is their preference. So, if you are supporting a newly diagnosed family, two referrals to EPaCCs and Little Havens will be needed.
For further information or resources on how to explain a referral to families please contact: lhinfo@havenshospices.org.uk
