Over 95% of Scots call on emergency unscheduled care in the last year of life

Over 95% of people in Scotland have used emergency unscheduled care in their last year of life, costing the NHS around £190million a year on top of their cost for planned care, a new study has found.

The study, conducted by the University of Edinburgh, for end of life charity Marie Curie and the Scottish Government’s Chief Scientist Office, revealed that nearly 95% (53,509 patients) of all those in their last year of life had at least one contact with unscheduled care service(s) and 5% had 20 or more contacts.[1].  The average costs of unscheduled care per patient in the last year of life were greatest for individuals with cancer (£4,083), followed by organ failure (£3,429), and frailty (£2,654).

Unscheduled care means urgent or emergency care for a new health problem or complication. These events can happen at any time, so services must be available 24 hours a day, seven days a week. These services include NHS24 telephone advice, primary care out-of-hours, ambulance service, emergency departments, and acute admissions to hospital.

Samantha Creighton is part of the Marie Curie Rapid Response service and she provides out of hours care in Dumfries and Galloway. She says its heart-breaking to see patients in distress when they have to wait for urgent support.

“I support people living with a range of palliative conditions such as dementia, motor neurone disease (MND), cancer and frailty and assist with symptom management, personal care, emotional and bereavement support.

“People living with palliative conditions don’t only need assistance Monday-Friday, 9-5. Anything can happen in a 24-hour period. Sometimes they are anxious, agitated, or in pain and can be waiting for up to three hours if they call NHS24 before help is on its way.

“Waiting for that amount of time can be incredibly distressing for them, especially if they live alone or have no family close by. At times, I have been called out three times in one night by the same patient. It’s heartbreaking and difficult to see them in distress.”

Finding the best ways of providing out of hours palliative and end of life care to avoid crises was identified as the top priority by the 2015 Palliative and end of life care Priority Setting Partnership (PeolcPSP) and Marie Curie is calling on Scottish Government and NHS Scotland for urgent action to be taken.

Annie Dickie, from Annan, in the Scottish Borders looks after her husband Jim who is living with a range of conditions that need to be managed full-time. She says its hard work being a carer and relies on out of hours care.

“Jim’s conditions need to be managed round the clock and things can happen at any time. I am his full-time carer and even although I’m an ex-nurse, there can be situations in the middle of the night that I need help with as I have visual impairment.

“There have been many times I’ve called the Marie Curie Rapid Response team. It’s for things that are not viewed as an emergency, so I can’t dial 999, such as his catheter becoming blocked or he’s wanted out of bed and I can’t get him back in. But he can’t just wait until the morning to get support.

“It is hard work for anyone being a carer, yet alone when you’re elderly, but here I am doing it in my 70’s.”

Professor Scott Murray from the University of Edinburgh, Primary Palliative Care Research Group, said:

“Our research shows the extent of unscheduled care delivered to people in their last year of life is significantly greater and uses more services than previously reported. There is a need for more investment and development of primary care unscheduled services and NHS24 to maximise their potential to provide high-value low-cost unscheduled care for people approaching end of life.

“We also need to help primary care teams identify more people who are at risk of dying in the next year and have anticipatory care conversations and coordination their care with hospitals and the ambulance service. This can lead to a reduction in avoidable hospital admissions and potentially a reduction in overall costs.”

Marie Curie is calling on Scottish Government and NHS Scotland for urgent action to be taken.

Richard Meade, Head of Policy Scotland at Marie Curie, said:

“We are urging the Scottish Government to commit to a new palliative and end of life care strategy in 2021, including a specific recognition of the key role of unscheduled care in supporting terminally ill people, and the need for further community-based investment.

“At Marie Curie, we know that most people at end of life would choose to remain at home or in their community, where possible, and by improving services in the community. Not only will this support people’s choices, but could lead to financial efficiencies in the wider healthcare system at an already challenging time.”

“We’re also calling for Scottish Government to re-establish the Scottish Palliative Care Research Forum and support the knowledge exchange in Scotland between policymakers, practitioners, commissioners and researchers. Collaborative working makes a big difference to patient/carer experience and could ease some of the pressure on already stretched NHS and social care services.”

Professor David Crossman, the Scottish Government’s Chief Scientist for Health, said:

“Care for people towards the end of life is an important priority for the Scottish Government and Scotland is already widely recognised for providing high-quality palliative and end-of-life care.

“We are delighted to have partnered with Marie Curie in co-funding this research. This work has produced important information on the use of emergency unscheduled care by people in the last year of life that will be of great value to policymakers.”

The Unscheduled and Out-of-Hours Care for People in Their Last Year of Life report has been produced by Marie Curie in partnership with the Chief Scientist Office Scotland, the National Institute for Health Research, Health and Care Research Wales, the Motor Neurone Association, the All Ireland Institute of Hospice and Palliative Care and others. The Scottish Government provided 50% of the funding.

 [1] Mason B, Kerssens JJ, Stoddart A, et al  Unscheduled and out-of-hours care for people in their last year of life: a retrospective cohort analysis of national datasets BMJOpen 2020;10:e041888. 8    http://bmjopen.bmj.com/cgi/content/full/bmjopen-2020-041888

To view the previous priority setting report please visit https://amrcopenresearch.org/documents/2-14