Three quarters of people who died at home during the pandemic struggled to get the care and support they needed at the end of their lives.
The revelation has been made in a new report published by Marie Curie, which says quality of palliative and end of life care across the UK was compromised by shortages of PPE, essential medicines and equipment, because these services were not seen as ‘frontline NHS’.
Unpaid carers surveyed by the charity said their loved ones received no support (8%), very little support (18%), some support (28%) or most (22%) of the support they needed.
The remaining 24% said they received all the support they needed and 1% answered ‘prefer not to say’.
The survey, which ran for two weeks last month, was conducted on 995 people who were involved in caring for someone who died at home from March 2020 to date.
Respondents revealed their loved ones didn’t get all the help they needed with pain management (64%), personal care (61%) and out-of-hours support (65%) before they passed away.
The findings have are released alongside Marie Curie’s inaugural Better End of Life report, which says that quality of palliative and end-of-life care across the UK was compromised due to it not being recognised as a frontline, essential service.
This meant that palliative care teams struggled to access personal protective equipment (PPE), essential medicines and medical equipment.
During the pandemic, there was a sustained increase in the number of deaths at home, even outside of pandemic peaks, with 40% more people dying in private homes overall, according to ONS and NR Scotland data.
Marie Curie has said that the last year has been a “stress-test” for community-based palliative care in homes and care homes. People with terminal illness have stayed away from hospitals to help protect the NHS but have not been able to get the help they need in the community.
The report finds that urgent action is needed to ensure the health and social care system is ready for the increased number of people dying in future – 100,000 more people a year are expected to die in 20 years’ time as the UK population ages.
Marie Curie is calling for a long-term settlement to ensure end of life care is sustainably funded, with a particular emphasis on ensuring people dying at home always receive the support they need.
Matthew Reed, chief executive at the end of life charity Marie Curie, said: “Many people will not be able to forget the deaths we have experienced this last year and it is vital that the Government, local health and social care leaders, and providers learn vital lessons from the pandemic. It’s heart-breaking to see that people dying at home, and their carers, struggled behind closed doors.
“The Government must now ensure that end of life care is seen as essential and not a forgotten after-thought. How the dying spend their final days lives on in the memory of the people who love them. It is true that most people would choose to die at home but no one should be allowed to die in pain and without the essential care they need. Today, we are calling for a long-term settlement to make sure end of life care is sustainably funded, with a particular emphasis on ensuring people dying at home always receive the support they need.”
Marie Curie has today launched the Better End of Life research programme in collaboration with King’s College London Cicely Saunders Institute, Hull York Medical School, University of Hull and the University of Cambridge.
The programme will examine evidence on the current state of dying, death and bereavement across the four nations of the UK and propose a policy agenda aimed at helping to ensure that everyone has the best possible end of life experience.
Reed added: “The Better End of Life research programme has never been more needed. In coming years it will help national and local decision makers across the UK have the evidence they need in order to improve end of life experience for all.”