Background The palliative care needs of people with a learning disability have been recognised (The keys to life strategy recommendations, 2013; Redall, 2010; Tuffrey-Wijne, 2003). There is a need for accessible information and joint working by learning disability and palliative care teams. There may be particular challenges around assessment of capacity, communication, delayed diagnosis and thorough assessment of symptoms.
Aim The project describes the service currently provided by specialist palliative care to patients with a learning disability in order that we can continue to improve access and service for this group of patients.
Method Following a significant event analysis involving the two teams, a retrospective case note review was undertaken to identify themes which would help inform further service development. All patients with a learning disability who were known to the specialist palliative care team or who died during a six-month period were included.
Results Five patients were identified.
• The age of the patients ranged from 37 to 66 years (mean 53.8 years)
• Four of the patients had metastatic malignancy; one patient had a metabolic disorder
• The patients were referred with predominantly physical symptoms including pain, breathlessness and fatigue
• Social isolation and a need for advance care planning were identified once the patients were reviewed
• In four of the patients there was evidence of joint working by the two specialist teams.
Discussion We have recognised that there is a need to improve access to our services for patients with learning disabilities and have developed formal links with the learning disability team. Communication and access for staff and patients have been improved through joint working to develop a better understanding of each other’s roles and a new patient information leaflet about palliative care developed with user involvement. Palliative care involvement highlighted unrecognised need, helped ensure patients’ wishes for future care were elicited and that they were more involved in decision-making.
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