The majority of people seeking help with their grief have struggled to access bereavement services during the coronavirus pandemic, early research suggests.
Many people struggling after a bereavement faced long waiting lists for support or were told they were not eligible, according to a study by Cardiff University’s Marie Curie Palliative Care Research Centre and the University of Bristol.
Others reported discomfort asking for help and were unsure how to access services, researchers found.
The survey, of 711 adults bereaved between March and December 2020, is believed to be the first to highlight the experiences of those trying to get support after the death of a loved one during the pandemic.
In the wake of so much loss, we now risk a post-pandemic bereavement crisisBishop of London Dame Sarah Mullally
It is published as a pre-print on the MedRxiv website and funded by the Economic and Social Research Council (ESRC) as part of UK Research and Innovation’s rapid response to Covid-19.
The survey found that the pandemic has had a major impact on quality of support and has “disrupted collective mourning practices”, which has increased people’s feelings of isolation.
Most participants had not tried to access support, but more than half (56%) of those who did experienced difficulties.
More than half (51%) of those surveyed were assessed as experiencing high or severe vulnerability.
But almost three quarters (74%) of this group said they were not accessing formal bereavement or mental health support.
And four in 10 respondents (39%) reported difficulties in getting support from friends and family.
The authors are calling for information on grief and bereavement services to be proactively provided after a death, and for GPs to be better resourced so they can signpost people to such support.
They also want to see more help to combat isolation, including flexible support bubbles for the recently bereaved if restrictions on social contact are in place.
There wasn’t the physical presence of people, which has delayed my grief. It’s been a year now and I feel stuckSarah Candlish, who lost loved ones during the pandemic
It comes as plans for a UK Commission on Bereavement were announced on Tuesday.
The independent commission, made up of 15 commissioners and supported by charities including Marie Curie, will explore issues faced by people bereaved during the pandemic and make recommendations on how better to support them.
Its chairwoman, the Bishop of London Dame Sarah Mullally, said: “To have to choose a very small number of people to be present at a loved one’s funeral, not to be able to hug and to hold one another, to be unable to gather with a large group of family and friends in someone’s home or a restaurant or pub afterwards is another series of losses, heaped on top of the raw grief.
“In some cases this has included the additional trauma of having been physically separated from the person we love as they have died.
“In the wake of so much loss, we now risk a post-pandemic bereavement crisis.”
Sarah Candlish, 47, lost both her husband and mother during the first wave of the pandemic.
Her mother Ethel was admitted to hospital with coronavirus and died alone, while her husband Simon died with bladder cancer at home by her side.
The pandemic is going to impact on millions of people’s grief for many years to comeLucy Selman, Palliative and End of Life Care Research Group
Ms Candlish described how her mother’s death “still doesn’t feel real for me” and how she feels guilt over not being able to be with her at the end of her life.
She said: “It was all so disrupted and I couldn’t take comfort from people being around and talking to me about her so when she died, she just died. There wasn’t any processing of the grief.
“I spoke to friends over text and the phone, but there wasn’t any cuddling or face-to-face conversations.
“There wasn’t the physical presence of people, which has delayed my grief. It’s been a year now and I feel stuck.”
Dr Emily Harrop, from the Marie Curie Palliative Care Research Centre based at Cardiff University, said: “It is incredibly upsetting to know that even when people did reach out to access support they desperately needed, they still faced difficulties such as long waiting lists or being told they are ineligible.
“We really need politicians and policy-makers to take a thorough look at how we can make changes to support people both before and after a death in the future.
“The survey results show that many people faced significant challenges in dealing with bereavement during the pandemic and highlights that more awareness of support options, information on grief and bereavement services should be provided proactively following a death and made available online and in the community.”
Dr Lucy Selman, from the Palliative and End of Life Care Research Group and the Centre for Academic Primary Care at the University of Bristol, said: “The pandemic is going to impact on millions of people’s grief for many years to come.
“It is imperative we ensure that bereaved people receive the correct support for their needs to prevent prolonged grief disorder and other problems.”
Nadine Dorries, minister for bereavement, said she is committed to ensuring grief issues get the “attention they deserve” so people can get help, adding: “Over the last year we have given more than £10 million to mental health charities, as well as those who support people dealing with bereavement.
“We will continue to work closely with the UK Commission on Covid-19 Bereavement, its Steering Group, and the Lived Experience Advisory Forum to ensure support is there where and when it is needed most.”