Despite them saying she was end of life, there was nothing there for my mum.
Maureen, who cared for both her parents at home before they died
While the experiences of those dying from COVID-19 in hospitals and care homes have shaped our image of the pandemic, hundreds of thousands have died behind closed doors, at home, from illnesses that previously may have been treated elsewhere.
In the summer of 2020, Maureen moved from London to Birmingham to care for her parents as they were discharged from hospital to die. “It seems very old fashioned, but we had them in the living room,” said Maureen.
For many, dying at home is seen as a preferable choice. But the health system is struggling to keep up, and we know that many thousands of people, like Maureen’s parents, may have been at home without the pain relief, symptom management, emotional and practical support they need. “There inconsistent community support from the NHS and the care agency,” she explains. “We read on the discharge letter that mum was end of life - no one told us despite speaking to the hospital every day whilst she was there. She wasn’t sent home with any end of life medication. There were no incontinence pads, there was no food.”
We were there hands on trying to give our parents the best last days and last few weeks that they had in our care.
(Picture of Maureen's parents holding hands)
Maureen and her siblings were left caring for their dying parents, with inconsistent additional support.
“We didn’t have the information that I assume other people would have," she says. "There may have been an assumption [from the community team] that we know what it looked like when people were dying, and we did not."
What is the problem?
More than 100,000 additional people have died in their own home across the UK since the start of the pandemic, compared to long term rates.
That means more than 1,000 excess deaths at home each week since March 2020. And next to nothing is known about the experience of those who have died at home, and of the families and friends who cared for them.
We estimate that around 70,000 people have died at home without the right end of life care in place since the start of the pandemic.
That’s tens of thousands of families who fear that the death of their loved one wasn’t as comfortable or peaceful as possible.
What can you do?
You can help us find out what happened to the people who have died behind closed doors during the pandemic. Their stories need to be heard. Their deaths matter too.
- The COVID-19 public inquiries across the UK to examine this issue.
- More support for people who are dying in their own homes or in the community.
- A health and care system where staff are properly trained in supporting those who are dying, and their loved ones.
This year, we will be calling for these changes, and you can be part of it - join Dying Matters.
When you join Dying Matters, you’ll be helping people to get talking. And if the pandemic has shown anything, it’s that dying can no longer be a hush-hush, taboo subject. The more we talk about it, the more we break down barriers, share experiences, and help our political and healthcare leaders know what’s needed.