All referrals must adhere to the following:A referral can be made by any consultant, with the consent of the child/young person and/or their parents or legal guardian. Child or young person lives in the catchment area of East and West Sussex or Brighton and Hove City. Age 0-18 (from 20 weeks pre-birth). New referrals for young people over 17 years of age are assessed carefully, according to their need and life expectancy. A patient should have a serious illness which is likely to shorten life plus an additional requirement for specialist palliative care input.For example: Any child considered to be at the end of life (including facilitating rapid discharge for end-of-life care)Expectation that the child/ young person will die within the next 6-12 months/ have a high probability of a rapid or sudden declineHave had at least 2 hospital admissions with life-threatening episodes within the past year.Have had an irreversible decline in condition to extent that escalation of treatment to intensive care is not appropriate.Symptom management that requires specialist palliative care inputAssistance with anticipatory and emergency care planning in collaboration with local paediatric lead.

COAST

Children’s Outreach And Symptom Team

Download the referral form Read the acceptance criteria

About COAST

We're a new service providing specialist paediatric palliative care for children with complex symptoms and their families across East and West Sussex. We're a responsive service who are there for families in Sussex at the most difficult of times.

Children facing end of life with complex symptoms can now be referred to COAST so that:

💛 vital plans can be made to manage the care they need
💛 they get specialist knowledge and support for their symptoms
💛 families feel supported and heard about their needs and wishes
💛 other healthcare professionals working with them are supported and provided with training

COAST are based at Chestnut Tree House, and was an innovation from two experienced healthcare professionals, who recognised the need for further specialist paediatric palliative care in Sussex.

What does COAST do?

We work with children across Sussex who have complex symptoms and need palliative care. The care we provide is individual for each family. We’ll always discuss with the family and healthcare professional what’s required for each patient. The services we provide can include the following:

New patient clinics: Discuss symptom burden, management options, and advance care planning.
Symptom reviews: Address worsening or unstable symptoms (for example: pain, breathlessness, excessive secretions, seizures, dystonia) in addition to usual management by local GPs or paediatrician.
Advance Care Planning: Including ReSPECT forms and ambulance directives, enabling comprehensive and realistic goals of care (reviewed annually or as clinically indicated).
Care and discharge coordination: Assist families in coordinating care when children have complex needs and are managed by multiple professional teams in multiple locations. Attend professional meetings to discuss next steps, ensuring cohesive care plans.
End-of-life symptom management: Provide specialist medical guidance to relieve distressing symptoms and engage in sensitive discussions with families about difficult decisions.
Support in complex ethical decision making: For instance to pursue treatments aimed to cure or significantly prolong life.
Bereavement support: Offer appointments to families to discuss medical management and address any questions they may have.

Find out more about COAST

All referrals must adhere to the following:

A referral can be made by any consultant, with the consent of the child/young person and/or their parents or legal guardian.
Child or young person lives in the catchment area of East and West Sussex or Brighton and Hove City.
Age 0-18 (from 20 weeks pre-birth). New referrals for young people over 17 years of age are assessed carefully, according to their need and life expectancy.
A patient should have a serious illness which is likely to shorten life plus an additional requirement for specialist palliative care input.

For example:

- Any child considered to be at the end of life (including facilitating rapid discharge for end-of-life care)
- Expectation that the child/ young person will die within the next 6-12 months/ have a high probability of a rapid or sudden decline
- Have had at least 2 hospital admissions with life-threatening episodes within the past year.
- Have had an irreversible decline in condition to extent that escalation of treatment to intensive care is not appropriate.
- Symptom management that requires specialist palliative care input
- Assistance with anticipatory and emergency care planning in collaboration with local paediatric lead.

Palliative care for children is the active and holistic approach to care for a child near end-of-life. It looks at promoting the best possible quality of life for the child, and making families feel supported. A child could be offered palliative care from the point of a life-shortening condition being diagnosed or when curative treatment for a life-threatening condition is not an option.

Paediatric palliative care includes managing distressing symptoms, planning for the future, bereavement support and supporting families to make make informed decisions about their child’s care. Palliative care can be introduced to any child at any point in their diagnosis, from before birth until adulthood. Each child’s palliative care need will be unique to them and their families’ wishes.

Education and relationship building is central to our service, and we welcome enquiries from any Sussex healthcare provider. We’re looking to foster relationships with local hospitals across Sussex, to encourage early discussions of potential new referrals and promote collaborative working.

We’re passionate about the expertise we can share with the wider sector to upskill and build stronger children’s palliative care

Please get in touch if there’s anything we can help with.

We’re proud of the service this will deliver, and have belief in the need and impact this will bring. It will change lives and the experience of many families.

To develop the service further we’re looking for your support so we can be there for even more families at the most difficult of times, supporting the whole family, bringing calm to high-anxiety situations and step in when most needed – offering knowledge, support and comfort.

To find out more about our services, or discuss a referral please email us:

sxicb.coast@nhs.net

How to make a referral

To refer a child to our service; please read the acceptance criteria, fill in the form and send back to us. Once we receive your referral, we'll aim to be back in touch within 5 working days.

Download the referral form