Putting terminally ill people at the heart of integrated care in Scotland

by Susan Lowes
Policy and Public Affairs Manager, Scotland


Susan Lowe, Policy & Public Affairs Manager, Scotland



The landscape of health and social care in Scotland is changing.


Last year, the Scottish parliament passed the Public Bodies (Joint Working) (Scotland) Act 2014, requiring all 32 local authorities and NHS boards to jointly plan integrated health and social care services. We need to ensure that new integrated authorities continue to place people at the heart of these changes when they come into effect in April.

The need for palliative care


Everyone should get the care, guidance and support they need – from pain relief to emotional and spiritual support – when they need it. In Scotland, 70% of the 54,000 people who died last year had palliative care needs, but not everyone got the care that they needed. Important support both in the community and in hospitals is often not made available to terminally ill people. In many cases they receive palliative care too late and sometimes only when a patient starts to really decline.

Moreover, the number of people who need palliative care is increasing. By 2035 those aged over 75 are projected to increase by 82%. More adults are living longer, and research shows that the chance of developing long-term conditions and terminal illnesses increase with age.

A new landscape


All palliative care, including that in hospitals, hospices and communities, will now be the responsibility of the new integrated authorities. They will be required to focus on palliative care services and caring for people with terminal illness, and they must show us progress on the work that they are doing.

They’re currently consulting on their plans about how they will organise health and social care in their local areas. One thing everyone agrees on is that co-operation, co-ordination and person-centred care is important. People should be at the heart of services and decisions surrounding their own care.

Yet, we have seen vast differences around how integrated authorities have consulted and engaged with people. Some have made it easy for people to tell them their views – undertaking public meetings and opening plain English consultations lasting months – allowing people to respond in a way and time that suits them. Others have not. Some consultations have not been widely publicised, accessible or have had short, unrealistic deadlines.

Integration provides the opportunity to improve outcomes for people across Scotland. We are looking forward to the opportunity of working with integrated authorities to help develop future plans that includes palliative and end of life care across Scotland. We are looking forward to helping make sure that everyone gets the care they need when they need it.

Visit our website to read more about how we campaign on behalf of people living with a terminal illness and their families.