Twice as many patients in the end of life care pathway are benefitting from their Special Patient Notes being available to ambulance services in North Tyneside.
There is increased awareness of the need to support people who are dying to have more control over their end of life experience through documenting their care preferences. Few eligible patients are registered on electronic systems and not all professionals use them.
The Electronic Palliative Care Co-ordinating Systems (EPaCCS) was developed using a multi-organisational mode, the Shared Palliative Care Summary (SPCS), and went live in North Tyneside in spring 2019. In partnership with Black Pear, SPCS is a scalable integrated electronic care plan for patients on the Palliative Care Plan Register. With joint agreement on a reporting format in place for all CCGs across the North of England, the way forward for a regional approach has been secured.
EPaCCS were developed to capture patient wishes and preferred place of death, and to improve co-ordination of care in real time by enabling the sharing of information across hospital, primary and community services in and out of hours.
Information presented through EPaCCS gives greater control over end of life experience. This information has the potential, when managed efficiently, to reduce anxiety and depression resulting in a positive impact on the patient and their surrounding family and friends. In practice, managing this information this has proven challenging and access to key health information is often limited for many health and social care professionals.
Using an established regional palliative care network, the CHC team supported activities which led to improvements in data collection and wider voluntary data sharing agreements. Interviews and focus groups were conducted with health and social care professionals, patients and bereaved family members to inform implementation. The project generated actionable insights into training needs, technical issues, information governance and clinical safety risk issues at the cutting edge of current developments.