Perinatal services include support to both antenatal (pre-birth) referrals and neonatal referrals (generally defined as up to 28 days of age), and this cohort make up a large proportion of childhood deaths. Prior to October 2021 the Paediatric Palliative Care Service (PPCS) at Birmingham Women’s & Children’s Trust had insufficient resources to sustainably provide specialist perinatal palliative care services. With the addition of a second PPCS consultant with interest and experience in perinatal palliative care, a service has been established and this study reviews this improvement initiative.
Antenatal referral to palliative services offers specialist support to complex birth planning, after death care planning, symptom management planning, and facilitates seamless transitions and continuity across care locations (such as to hospice from maternity services, between fetal medicine to neontatal services and also maternity to children’s services). A perinatal palliative care service offers much more than consultations though, with multidisciplinary specialist support available to healthcare services, educational support to related services and attendance at weekly fetal medicine and neonatal service multidisciplinary meetings to provide pre-referral guidance and support. Our service has been able to also provide these diverse elements across the West Midlands.
Improvements seen include significant increases in perinatal referrals with increased uptake of Acorns Hospice support. From 2017 to 2021 Acorns had one to three antenatal referrals per year and in 2022 has already had three antenatal referrals at time of writing in May. PPCS has had a massive increase from five antenatal referrals (2018 to Oct 2021) to 16 (October 2021 to May 2022). We outline the key elements in setting up a perinatal palliative care service and the key improvement outcomes to be considered including a case study highlighting improved experiences of families with a baby with palliative needs. We conclude that the perinatal service has been an important development for the West Midlands and discuss future directions.
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