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23  Access to palliative care for ACHD patients – a joint service review
  1. Valerie A Potter1 and
  2. Filip Zemrak2
  1. 1Department of Palliative Care, St Bartholomew’s Hospital, Barts Health NHS Trust, UK
  2. 2Department of Cardiology, St Bartholomew’s Hospital, Barts Health NHS Trust, UK


Introduction Adults born with congenital heart disease represent a remarkable success in the field of cardiology with a huge improvement in survival rates. However, many challenges remain and many adults with Adult Congenital Heart Disease (ACHD) are considered to have a chronic condition with associated reduced life expectancy.

Aims To set up a joint ACHD-palliative care service to increase earlier access.

Methods We designed a new joint service which consisted of simplification of the referral process, joint multidisciplinary team (MDT) discussion and a joint clinic. We recognised the value in a dedicated ‘link’ palliative care physician who had a specialist interest in this cohort. A multidisciplinary stakeholders group met, and key feedback gathered. A joint multidisciplinary meeting (MDM) between the ACHD team and a palliative care consultant and clinical nurse specialist was trialled; this was modified upon feedback to discussion of patients within a dedicated section of the palliative care MDM. After discussion, selected patients would be seen in ACHD clinic by both cardiology and palliative care. Inpatients were referred via the usual referral pathway but also with direct ACHD – palliative care discussion.

Results Service audit was between June 2021 – September 2022. 8 patients were reviewed by hospital palliative care; 2 of these were MDM reviews alone and 6 were with inpatient and/or outpatient reviews in addition. 100% had a symptom control and psychosocial assessment and 100% had an introduction to ACP discussion. 7 were referred to their local community palliative care service. 4 patients have died.

Conclusions It is recognised that palliative care needs to be offered early. Studies have demonstrated many ACHD patients recognise the value of this but it is often under-utilised. Our project demonstrates the benefits that a joint service can offer.

Impact This joint service is improving access to the benefits of earlier palliative care.

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