Services must be better equipped to support terminally ill people - Ellie Wagstaff

Ellie Wagstaff is Policy and Public Affairs Manager at Marie Curie

People living with a terminal condition also become increasingly dependent on social care as they approach the end of their lives, alongside primary care and palliative care services. Their care and support needs are often very complex at this stage of their condition, placing increased demand on services, much of which cannot be fully accommodated because of long-standing issues with workforce capacity, care coordination and integration between health and social care.

These issues have been laid bare throughout the pandemic, and will have left deep scars for many health and social care professionals, terminally ill patients, families and carers who have experienced them most acutely. The last two years have shown the importance of ensuring services and workforces must be better equipped to support the needs of terminally ill people, including social care, both now and in the future; as we know that by 2040, up to 10,000 more people will be dying with palliative care needs.

The recent publication of the analysis of responses to the Scottish Government’s consultation on the National Care Service (NCS) spotlighted these issues as key areas which must be addressed to support improved access and delivery of social care. It was clear there are still many questions around how the NCS will operate to support those who need to use its services, including terminally ill people, their families and carers.

A whole-system, public health approach will be crucial for the design and delivery of the NCS to ensure terminally ill people have full access to the care they need. There must be recognition of the cultural transformation needed to achieve this; including legislative changes, regulatory shifts, interdependencies and practitioner attitude which all require extensive and different support and will take time to implement. Each aspect will have existing, and new, complexities which will require transformational leadership to ensure the NCS delivers the support terminally ill people need.

The third sector must be at the heart of helping inform the NCS’s design and structure, given the key role it plays in integrated services. Currently, the third sector is often not included in early conversations with Integration Authorities regarding the strategic planning and commissioning of palliative care services, despite having extensive expertise, knowledge and skills.

As the establishment of the NCS progresses, the Scottish Government must recognise the role social care plays in supporting dying people, and the NCS must be a framework where palliative care can flourish to help everyone have an end-of-life experience which reflects what is most important to them.

Ellie Wagstaff, Policy and Public Affairs Manager, Marie Curie