Background Adults who have grown up with neurodisability experience multiple unmet needs (Solanke, Colver, McConachie, On behalf of the Transition collaborative group, 2018; PCPLD Network, NHS England, 2017). They are more likely to have unanticipated deaths, with limited opportunity for exploration of their holistic needs and wishes (Todd, Bernal, Shearn, et al., 2020), however, the unpredictable and long natural history of their condition makes it difficult to know when they would benefit most from palliative care input. Few adult palliative care services can sustain support to patients with a complex but stable condition who may live for many years.
Aims We explore a new model of collaborative working to sustainably address the unmet palliative care needs in this patient group. By regularly meeting with specialist clinicians from neuro-rehabiliation, respiratory medicine, intensive care, neurology, primary care and gastroenterology, palliative care specialists aim to:
Identify patients who need holistic symptom assessment.
Contribute to future planning and complex decision-making.
Sign-post to support that is local to the patient.
Advocate for improved person-centred care during hospital admission.
Facilitate continuity of care during transition from children’s services.
Methods and impact The cross-service multidisciplinary team meet bi-monthly. Data for all outputs and activity are recorded. Palliative care outputs of the meeting include plans for advance care discussions; symptom management advice; discussion with local community palliative teams; and referral to a bespoke young adult palliative care clinic. Additional benefits include peer support within the group and teaching opportunities with specialty teams. Further time is needed to evaluate the impact on patient experience although initial feedback from patients and professionals has been positive.
Conclusions We describe a new model of palliative care input for a patient group who are known to have multiple unmet needs. Outcomes to date demonstrate that the model is sustainable, supportive to staff, harnesses and enhances generalist palliative care skills, and is likely to improve patient experience and continuity of care.
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