Grief Will Be The UK’s Next Health Crisis – So How Do We Deal?

Photo by Nur Yilmaz.
Jenny’s mum died of throat cancer in March 2020, on the eve of lockdown. With the funeral they wanted out of the question, her immediate family gathered with the minister in a cold, empty church hall at the time of her cremation. They FaceTimed a close relative who was sitting in a car outside the church. "I was only 18 and my sister 14 and we weren't even able to see our best friends after Mum died," says Jenny. "We couldn't hug anyone except for each other and Dad."
There were 70-80,000 excess deaths in 2020 and more young people have been left bereft and disoriented in the wake of pandemic circumstances, facing unexpected loss and unprecedented loneliness. By July 2021, 1 million under-18s had lost a parent to COVID worldwide. Many more, like Jenny, have continued to lose loved ones in non-COVID-related circumstances, too.
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Recent research from Marie Curie and the University of Bristol takes the first steps towards understanding the wide-ranging and long-lasting effects of grief in the UK post-COVID. In the study, two thirds (67%) of respondents reported that they experienced social isolation after a bereavement. What we don’t know yet is just how this loneliness during a period of bereavement will impact complex and long-lasting mental health problems.
We shouldn't wait to find out, explains Cardiff University’s bereavement researcher Dr Emily Harrop, who was the co-principal investigator on the study. Now is the time to be active and put preventative measures in place, she says. "A lack of preventative support is likely to have longer term implications, ultimately resulting in much more service need, and more people developing complex mental health problems. And actually, for some people, just having the social support that they need or the opportunity to speak to a counsellor for a certain number of sessions may go a long way in preventing longer term problems."
One long-term effect of bereavement is prolonged grief disorder (PGD) — sometimes known as complex or complicated bereavement disorder — which has wide-ranging consequences in younger people. In a 2014 PGD study, which monitored 157 recently bereaved 17 to 29-year-olds, 34% had gone on to develop a form of depression. For those suffering with PGD, painful emotions are so long-lasting and severe that it can be difficult to recover from the loss and resume their own life.
"Measures of prolonged grief disorders can only become validated around the year mark, or certainly between six to 12 months [after the loss]. Before that, it’s difficult to distinguish between bereavement and what would be considered problematic grief responses," explains Dr Harrop. New research is being worked on that will reveal more about the pandemic's effect on PGD when it's published in early 2022. That being said, Dr Harrop thinks that "there’s enough indications to suggest that overall grief levels are going to be worse [post-pandemic]. It’s certainly been predicted that that’s going to be the case."

"You could call what we have been seeing during the pandemic an 'altered grief response'," says Catherine Millington-Sanders, a GP and one of 15 commissioners of the UK Commission on Bereavement, the aims of which include establishing key challenges affecting bereaved people throughout the pandemic and beyond, as well as pinpointing any improvement recommendations that should be made to decision-makers about support for bereaved people. She has drawn on her own experiences for the commission. "I lost my father and other people in the family and a couple of very good friends. On top of having that happen, to feel even more drawn away from people who would have been lifelines was difficult."
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Millington-Sanders is keen to emphasise that everyone experiences grief and processes bereavement differently but that loneliness and isolation hasn't helped. Dr Harrop has seen this play out in her research. "There is definitely a sense [in the study] that there were issues relating to young people being isolated from their peers [when experiencing bereavement]. Parents commented on how difficult it's been for their children especially when schools and universities have been closed."
One younger participant in the study reflected that since parental loss was unusual in her peer group, her friends were unable to provide the support that she needed. This was certainly the case for Jenny. "My friends found that they didn't know how to support me as the only way of contact was through a phone and I didn't want to speak much," she says. "Being stuck in the house with all the memories of Mum gave us too much time to think about what had happened and no escape. We were locked in isolation at the time we needed other people the most."

Having a place to talk comfortably is "absolutely crucial" to processing a bereavement, says Millington-Sanders. Twenty-four-year-old Amber Jeffrey, founder of The Grief Gang podcast, lost her mum when she was just 19 and has since forged a safe space online to talk about the 'taboos' of grief, death and loss more openly and with people her own age. "Plummeting myself into my community has helped," she said on the Grief Out Loud podcast in December. She also reflects on the lack of knowledge within her friend group about what to do at the time of her mum's death. "My friends at the time were fantastic in the beginning, and they supported me [...] but we were so young." Since then, Jeffrey has spoken to her friends as adults. "We were a bunch of teenage girls, none of us had ever been touched by grief. We were headless chickens – we didn’t have the language of how to talk to a grieving friend." Now, Jeffrey's community is helping to write a new lexicon of grief for people in their 20s. It's a normalised language, filled with honesty and emotion. "Grief gives zero fucks for your schedule," reads a recent post on Instagram. "Tell the world their name," reads the next.
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Alka Rajput, 30, who lost her grandad Mahadev in November 2020, channelled her grief into a form of positive communication in order to help her process it. She now volunteers for Marie Curie, conducting telephone support interviews with those who are recently bereaved. "[My grandad] was the first loss that I’ve had that has impacted me and changed my life," she explains. "I wanted to do something positive with my experience of the grief that I was encountering."
The last 18 months have forced the creation of inspiring individual stories like these, which reach through isolation and find connection. But Dr Lucy Selman from the Palliative and End of Life Care Research Group at the University of Bristol says it's vital we prep for what comes next on a national level, too. "With the average number of deaths in the UK projected to increase over the next 20 years, it is essential that bereavement services are adequately resourced and measures are put in place to ensure everyone who has experienced a bereavement is signposted to support options and information on grief and bereavement services."
As well as having the right resources in place, the services must do what people need them to do. Millington-Sanders explains: "We know that often, people don’t reach out. Services were ramped up during the pandemic but there were fewer calls in the beginning. Now, we are starting to have this different dialogue about what’s actually needed. There are some assumptions that we know what [the services] should look like."

She continues: "I might be biased but I think it's probably one of the most under-represented areas of the NHS. And I think the pandemic has heightened that need. This is a real issue, now we've got all these people who are going to be affected with known health outcomes at the end, with real societal impact."

The independent commission that Millington-Sanders is working with is calling out for individual stories of grief so as to build a patchwork of the national narrative, with all its different and interweaving threads. From this, it is hoped that a new understanding of what support is actually required will begin to emerge. "It's got to be done, and it's got to be done right. The only way is through listening to people," she says. "Bereavement is unique to each individual. It’s really important that we don’t have assumptions, or a one size and one service fits all."

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