Services must be better equipped to support terminally ill people

The third sector should be a the heart of shaping the proposed National Care Service, says Ellie Wagstaff

Social care is an integral part of the support that terminally ill people receive, helping them to live as well as possible right up until their death. This includes being able to die in their place of choice, where that is possible, which we know is often at home; people in the last six months of life in 2020-21 in Scotland spent over 90 per cent of their time in community settings, according to Public Health Scotland data.

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 andsocialcareprofessionals,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,includingsocialcare,bothnow 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’sconsultationonthenational

Care Service (NCS) spotlighted these issues as key areas which must be addressedtosupportimprovedaccess 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 terminallyillpeoplehavefullaccesstothe care they need. There must be recognition of the cultural transformation neededtoachievethis;includinglegislativechanges,regulatoryshifts,interdependencies and practitioner attitude which all require extensive and different support and will take time to implement.eachaspectwillhaveexisting, 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 ofhelpinginformthencs’sdesignand structure, given the key role it plays in integratedservices.currently,thethird sectorisoftennotincludedinearlyconversations 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 dyingpeople,andthencsmustbe aframeworkwherepalliativecare canflourishtohelpeveryonehave an end-of-life experience which reflects what is most important to them.

Ellie Wagstaff, Policy and Public Affairs Manager, Marie Curie