The Scottish Parliament’s Health and Sport Committee has launched an inquiry into social care, which poses the question, “What is the ideal model of social care to meet future need in Scotland?” Helen Malo, Hospice UK’s Policy and Advocacy Manager for Scotland, writes about how Scotland can meet the social care needs of people affected by terminal illness.
Living a full and independent life
Living a full and independent life is important for everyone, even more so if you have a terminal illness. It’s often the small things that make the biggest difference to someone day-to-day. Help with washing and dressing, getting up and about, and support to see friends and family.
Social care is a core part of palliative care, and is just as important as managing someone’s physical symptoms, such as pain, and providing emotional, spiritual and psychological support. It’s about person-led care, which helps people to live as fully and as well as they can to the end of their lives, however long that may be.
Fast, streamlined access to care
With a terminal illness, time is of the essence and there is only one chance to get care right. Taking a proactive, ‘planning ahead’ approach to social care can improve someone’s quality of life and help them to access the care they need, when they need it.
Not having the right support at the end of life can have a profound impact on family and loved ones, as well as having a significant impact on the wider health and social care system.
Time is precious. Across Scotland, in 2018-19, about 400 people died in hospital while waiting to have their social care needs assessed or for a care package to be put in place.
A delay of a few weeks in receiving a care package, when someone may only have a few weeks or months to live, can leave families distressed and upset at being unable to spend quality time at home with their loved one. Some families have been so frustrated by delays in receiving care packages that they’ve bought their relative home from hospital to provide care themselves. But without appropriate support, they’ve been struggled to cope and the person has been readmitted.
Support for carers
Family and informal carers provide a huge amount of support to people with palliative care needs. Having a family carer is the single most important factor to enable someone to die at home, if that is where they wish to die. We need a joined up system that supports people with a terminal illness, and those closest to them, when they need it the most.
A lack of support can put someone at risk of reaching crisis point. Nearly half of carers, caring for someone with palliative care needs, said the person they are caring for had an emergency admission to hospital in the last 12 months. In some cases, people have had eight or nine emergency admissions to hospital in the last 90 days of their life.
A quarter of carers felt that an emergency admission could have been prevented if the person they cared for, or they as carers, had received more support.
Flexible, responsive care
With progressive conditions, the amount of care someone needs can rapidly change. Someone with Motor Neurone Disease, for example, can quickly go from requiring one carer twice a day, to needing two carers visiting four times a day.
Services need to be flexible and quick to respond when someone’s needs change. But social care staff can struggle with a system and processes that can be cumbersome and unworkable, and without the workforce in place to meet the increasing complexity of people’s palliative care needs.
What needs to happen?
Hospice UK has come together with the Association of Palliative Care Social Workers, Carers Scotland, Children’s Hospices Across Scotland, Marie Curie, MND Scotland, Scottish Care and Sue Ryder, to set out what is needed for Scotland to have a social care system that meets the needs of people with a terminal illness.
We want to see:
- Fast, streamlined access to responsive and flexible social care for people with complex palliative care needs, supported by commissioning arrangements that focus on person-led outcomes, not time and task
- Proactive care, anticipatory care planning and early intervention embedded across social care
- An increase in the capacity of community services, including care at home services, care homes, and support and services for carers; as well as support for ‘compassionate communities’ to help people before they need, or alongside, formal care services
- More training for front-line staff on self-directed support (SDS) and more support for people with a terminal illness to access the SDS option that best suits their needs
- A social care workforce that is supported and valued, with the right skills and training to meet the needs of people with terminal or life-shortening conditions
- Improved identification, assessment and support for carers who are caring for people with palliative care needs, both in the caring period and when their caring role comes to an end