Sue Hogg, Director of Children and Families at CHAS, talks about our partnership with NHS Lothian to enhance neonatal care and family support.
CHAS has been working with colleagues at NHS Lothian since 2014 to enhance the neonatal palliative care and the support that families receive at the Simpson's Centre for Reproductive Health in Edinburgh. A new report on this collaborative approach demonstrates that families and staff truly value the very specialised support that CHAS can offer.
"CHAS has had a Diana Children's Nurse based in Simpson's neonatal unit since June 2014, and a Children and Families Support Worker since June 2015. A consultant neonatologist, part funded by CHAS and NHS Lothian, provides senior medical input to the team, and this nursing, medical and family support team aims to work seamlessly with NHS staff already working in the unit.
"Between June 2015 and May 2016 the team supported the families of 78 babies through 172 face-to-face support sessions. Of these babies, 15 died during this period; the others had complex needs or may have been identified as having life-shortening conditions.
"Support provided to families included emotional and bereavement support, sibling support, memory making, post-discharge support, as well as benefits advice and advocacy - for some parents, social and financial difficulties were a direct result of having a baby requiring long-term care in the unit.
"The wide range of feedback received during this initial pilot project was extremely positive and it was clear that families and staff truly valued the very specialised support that CHAS can offer. The introduction of memory making in particular has proven to be of immense value to families and is now firmly embedded within the unit's practice.
"Our evaluation not only demonstrated that the team and their expertise is an extremely valuable resource, but that it was a much-needed addition to the work of the unit. Since May 2016, this work has continued and is now an integral part of service delivery within the unit.
"As well as providing invaluable support to families and staff, the project has led to an increased awareness of CHAS services amongst NHS staff, as well as an increase in referrals to CHAS of babies aged under one year old. Recent research commissioned by CHAS in 2015 and 2018 showed that there is a significant need for palliative care for babies aged under 1 year old. This service has helped to meet the needs of many of these families.
"By bringing hospice services into the hospital and offering much needed support and memory making, families are given an important choice. It is CHAS's ambition to continue working closely with the NHS to ensure that all families receive the support they need - when and where they need it. This collaborative approach also helps us increase the reach of CHAS services to more babies, children and families requiring palliative care, right across Scotland."