(3 days, 6 hours ago)
Lords ChamberTo ask His Majesty’s Government, following the COVID-19 Day of Reflection, what steps they are taking to improve support offered to people bereaved as a result of COVID-19.
My Lords, I declare my interest as the former chair of the UK Commission on Bereavement and other interests as set out in the register. Though we are small in number, I am grateful for the opportunity to hold this debate. I am aware that reflection on the impact of Covid-19 is no longer a particularly attractive subject, but I feel strongly that the impact of this world-changing event will continue to be felt in the years to come.
In our nation’s living memory, there has not been a moment in which so many of us have experienced bereavement at the same time. Over the course of 2020 and 2021 alone, there were an additional 750,000 deaths over what would ordinarily be expected based on the previous five-year period. By the end of 2022, an estimated 16,700 children and young people in the UK had been bereaved of their parent or a primary caregiver through the deaths associated with the pandemic.
On Sunday 9 March, we marked five years since the start of the pandemic with a day of reflection, on which communities up and down the country remembered our national and personal loss. Many of these wounds are still raw, and the BBC reported that sobbing could be heard at the National Covid Memorial Wall. This afternoon, I will discuss the particular disruption to bereavement during the pandemic and the long-term impacts of restricted bereavement.
The UK Commission on Bereavement was launched in June 2021 and, in October 2022, we produced our report, Bereavement Is Everyone’s Business. The report identified a number of key ways that the pandemic disrupted the grieving process of those bereaved. The first, and perhaps the most obvious, is funerals. Restrictions meant that there were delays, restrictions in numbers, social distancing of attendees and changes to collective end-of-life rituals: wakes, shivahs, collective recitation at home, nine nights, and the viewing and embalming of bodies at home were not possible.
As with many aspects of the pandemic, not everyone’s experience was the same. Many religious and ethnic-minority groups faced more significant barriers to organising funerals. Many people reported that finding funeral directors or bereavement organisations with culturally appropriate funeral services was difficult, and that not being able to participate in usual rituals prevented them grieving properly.
Being able to access a meaningful and affordable funeral was already a challenge before the pandemic, and it remained so afterwards. According to SunLife’s Cost of Dying report 2025, the average cost of a simple funeral was £4,285, which is a rise of 134% since data collection began in 2004. It also found that a third of people said that the cost of living crisis had impacted on how they organised a funeral. Almost half said that paying for a funeral had impacted on their mental health. The funeral support service Down to Earth, which is run by Quaker Social Action, notes that a complex relationship exists between somebody’s grief and their paying for a funeral. If somebody gets into debt doing so, that debt can last for years and has a profound impact on their feelings around their bereavement. I have serious concern that people’s ability to access the funeral that they may like is financially determined.
A second way in which the grieving process was disrupted was in the most common experience of social isolation and loneliness. A significant part of the bereavement process for many is being with family and friends to support one another in grief, but 74% of adults who were bereaved during the pandemic said that they experienced social isolation and loneliness after the death of a loved one.
Thirdly, having contact with the dying person at the end of life was heavily restricted, as so many people died in hospital. Some said to the commission that knowing that their loved one was alone in hospital before they died was the hardest part of the bereavement process at the time. Those were the impacts that we saw in our work in 2022, but further work has been undertaken since then and there is more to learn.
New research published in 2023 examined the longer-term impact of grief among those who had lost loved ones during the pandemic. It found that, two years after their bereavement, 29% of people studied met the criteria for prolonged grief disorder. In particular, the social isolation and loneliness in early bereavement contributed to higher levels of prolonged grief symptoms.
According to another study on prolonged grief disorder during Covid 19, there may be a detrimental, long-term psychological outcome for those bereaved individuals regardless of the cause of death of their loved one. We do not yet fully understand all this, but there is a growing body of evidence detailing the ongoing impacts of the pandemic on bereaved people and the difference that accessible, timely and effective bereavement support can have on their bereavement symptoms. In addition, we should not forget those with long Covid who grieve the loss of who they were before they contracted the virus. It is important that we support the ongoing impacts in this area as well.
Following the recommendations of the bereavement commission, there has been much progress which we can commend. This has been and is being worked on by different Governments, including the previous Minister, the noble Lord, Lord Markham. We are glad to see the introduction in the Employment Rights Bill of a new right to bereavement leave for people who have lost a close relative. The Government are also introducing the facility for people to register a death online. The Department for Education in England has consulted on proposals to include grief education in the curriculum. On the housing front, the Ministry of Housing, Communities and Local Government has an amendment to the Renters’ Rights Bill to prevent the use of ground 7 as a ground for eviction—that is, death of a tenant. This increases housing security for bereaved tenants in the private rented sector. It is very welcome.
However, there is more that can be done to support bereaved people. One of the initial recommendations from the UKCB report was for the Government to establish and deliver a cross-departmental strategy for bereavement. It is clear that bereavement and its surrounding issues are multifaceted and in need of cross-government working. A strategy could be a useful way to give this issue the attention it deserves.
The cross-governmental working group was established in 2021 and is a useful space to discuss bereavement-related issues, but there must be much more of a focus if we really are to support bereaved people. There is also the need for wider investment in bereavement services, especially for black, Asian and minority-ethnic communities and others who have been demonstrated as being poorly served. This is particularly significant given that some communities experienced much heavier loss than others during the pandemic, especially in London. If the findings I mentioned earlier prove true, this may mean that some communities are more adversely affected by symptoms of prolonged grief than others, which, of course, leads to poor mental health.
Finally, it seems that everyone, when asked, agrees that it is healthy and good for us as a society to talk about death. However, we are still poor at doing it. I am not going to talk about the substance of the assisted dying debate here, but it has prompted us as a nation to talk about death and dying, though this is still far from a normalised topic for many of us. That is reflected in our planning for and focus on bereavement, both nationally and perhaps personally.
My own experiences as a cancer nurse and as a priest mean that I have sat with people in the final hours of their lives and with people coming to terms with the loss of a loved one. To grieve is a universal experience and part of what it is to be human. My faith prompts me to believe that our feelings and relationships and the grief that comes when we lose somebody important to us are important. These experiences and emotions must be tended to. It is the role of us all, including the state, to do so.
I am grateful to your Lordships’ House for providing the time for this very important debate. Will the Minister agree to meet me and perhaps some of my key colleagues in the bereavement policy space to discuss this further? I hope that the national day of reflection will not confine our thinking on supporting bereaved people to a future crisis or as a thing of the past but that we will take this opportunity to cast a renewed focus on bereavement, because it remains everyone’s business.
I congratulate the right reverend Prelate the Bishop of London on securing this important topical debate and on her excellent introduction to the very wide range of issues contained in it. I shall divide my time into two areas: first, bereavement support to people since Covid but not only because of Covid; and, secondly, the effect of Covid deaths on their loved ones and on wider society.
On deaths at the beginning of Covid during lockdown, through our social conventions for grieving and marking the life of a special person who has died, saying goodbye to a loved one on a phone or a tablet via a nurse holding it up in hospital was extremely hard. Then there were the limited numbers of people being permitted to be at a funeral. However, I have to say that the one benefit has been Zoom funerals. If you cannot be there in person, it is now normal to be able to join online or even see it afterwards, which is an important part of the grieving process.
On new styles of funerals and their cost, to which the right reverend Prelate referred, I am concerned about the advertisements for extremely cheap funerals that are constantly on TV at the moment. I notice that they are just beginning slightly to qualify what is on offer. People do not understand what is on offer. I wonder whether we need to address the issue about advertising regulation for these funerals, because people often buy in advance and then discover that there is literally no service or gathering whatever and there is no way they can mark the cremation of the person either—there is nothing. For some people, it may be the right thing, but I know that many funeral directors are frustrated, because they can offer cheaper funerals than most people imagine. The average price was cited earlier, but they are certainly trying to make sure that they can provide it.
The other big issue is the British style of mourning, if I may put it that way; to call it restrained would be an understatement. There are cultural differences in our own communities, but also in Europe. The first open-coffin funeral that I went to was for a Latvian relative, and everybody at the funeral went up to kiss the person in the coffin. I was 20, and I think it would be fair to say that I was horrified, because it is just not within our culture. One problem with Covid was that all those different cultural ways of saying farewell were probably even more inappropriate. Covid removed our ability to mourn, and I therefore welcome the growth of “grief cafés”, where people can come together to talk about preparing for grief, recognising that somebody is going to die, but also, after they have died, having a safe space where people can come together in an entirely safe and relaxed environment to chat about death and how it is affecting them.
I also want to mark the role of leaders of religions and belief in supporting families and friends and the individual on that journey to death and afterwards. That was one of the hardest things that we lost during Covid. Being on the end of a phone was extremely difficult—unless the weather was fine and you could have a meeting outside—and it transformed the experience, and not in a good way.
I also want to talk about how grief affects children. That journey of grief and saying farewell is very different for anybody under about 16. We fostered two children of a friend of ours, and the vicar and the chaplain of the hospice guided them, aged 10 and 12, and ourselves in what was going to happen. They encouraged us to take the children to see their mother after she had died, when our natural reaction would have been not to do that. But it was the right thing to do, because they were happy to do it, and it helped them to recognise that she was gone for ever. The support that we got from our faith leaders and our wider church community made an enormous difference.
I turn now to the consequences of Covid. I was health spokesperson for what we might describe as the whole of the first big period of Covid, up until December 2022. The most shocking thing that happened was that certain doctors abused the DNACPR decision-making. Never again must these be taken without something on a patient’s file showing that they have explicitly been part of the decision-making, even if it was not their decision, or, if they do not have capacity, that their attorney or next of kin has also been part of it. It was particularly unfortunate that many very elderly people with dementia and those with learning disabilities were given DNACPRs without their and their families’ knowledge.
For those families who lost people who were on the front line during Covid without proper PPE, can the Minister say whether the Government will follow the recommendations for pandemic preparedness in the first report of the Covid-19 inquiry, to ensure that we can protect front-line staff when—not if—the next pandemic arrives? I add to that the front-line staff who survived severe Covid but have been medically retired and are now fighting the NHS, which says that, because these well-loved staff—who served for many years and are important to our NHS—cannot confirm when they caught Covid, they are therefore not entitled to compensation. This is unjust. I know two people whom that has affected very badly. They were in PPE made of black plastic bags right at the start, and both caught Covid within the first three weeks.
Those who died very early on, pre-vaccination, were overrepresented by, as I am sure you will remember, those described as “clinically vulnerable”—I am one of that number and I survived Covid. They are still overrepresented in deaths today, even though the number of Covid deaths is much lower. This winter, we have seen a large number of deaths from flu and pneumonia. Part of the problem is that Ministers, past and present, tell us that Covid is over, but it is not. The consequence of that is sometimes long Covid, but it also affects decisions about whether Covid is airborne or not.
UKHSA and NHS England tell us that Covid is not airborne transmitted and that the main transmission is usually through contact with droplets. The WHO disagrees with this and changed its definition two years ago. Why? Because the WHO realised that the size of the virus was small enough to mean that it is airborne. That is important because that requires masks and ventilation for those who may be at risk. The WHO says that we should consider using masks if at risk. I would love us to get to the stage of Japan and China, where if you have a bad cold and you are going on the underground, you put a mask on. That has not been in our culture, but it would help those who remain at home because they are so clinically vulnerable that they do not feel safe going out.
That would also reduce transmission of various viruses in schools. My regular hospital is Addenbrooke’s in Cambridge, which during lockdown devised a very cheap but effective ventilator that is now available on every ward. The staff also mask up very early on. However, in schools there is a large amount of transmission, not of Covid but of other viruses, because there is no ventilation in classrooms except that ordained by the head teacher.
That frustration is born out of the death of a very dear friend of mine who survived a major lung transplant at Papworth. When he went home, his care worker did not wear a mask and she gave him Covid. He died, after the long period he had spent in hospital and after all the NHS work to try to take care of him. The equation does not seem right there.
Can the Minister say, therefore, whether the Government will make sure that all the recommendations that come out of the Covid inquiry—not only those in the first report, which we have seen—mean that we keep our people safer, not only from Covid, and encourage our front-line staff, including those in the NHS, that where they work they will be able to work safely? Above all, given the tone and nature of this debate, will we be able to support people as they face death and the loss of loved ones in the future?
My Lords, I thank the right reverend Prelate the Bishop of London for securing this debate on this important matter. I thank her and the noble Baroness, Lady Brinton, for their moving remarks about the lessons they feel we ought to learn.
Listening to the moving opening remarks from the right reverend Prelate, I was reminded that we all have experience of losing people during Covid and of grief, or perhaps delayed grief. I will share my own experience, if I may, not for therapy but for reflection. On 20 September 2020, I lost my father-in-law and then, four hours later, I lost my father; my children lost both their grandfathers on the same night. Both of them lived abroad, and so we were not able to grieve in the usual way. We had to watch the funerals, one day after the other, on a WhatsApp video. It was not until July 2022 that I was able to visit my father’s grave in America and break down and cry, and to scatter the ashes of my father-in-law in another country. You realise when you break down and cry the feelings that you had been holding back all these years, and how that has been debilitating in some ways. I had not realised that until that time.
Given that, I want to take the opportunity to express my condolences and sympathy to all those who suffered personally or lost loved ones during the pandemic. I pay tribute to all the wonderful health and care workers who looked after us and those suffering from Covid-19. We should acknowledge the work of public and private sector workers who carried on working to deliver essential services—some of which are not always considered essential services, whether it be driving buses or home delivery. While others were able to isolate quite safely in their own homes, they put themselves at risk.
Noble Lords will be aware that, when in Government, we announced the NHS and social care coronavirus life assurance scheme to protect the families of front-line NHS and social care workers who sadly died while providing essential work. Initially, it was a payment of £60,000 to the families in England, with funding for similar schemes in Scotland, Wales and Northern Ireland, but we felt it was important to increase that level of support to families facing bereavement. Sadly, uptake was not as high as it could have been, and we had to extend the scheme to September 2023 to ensure that more families could benefit.
While money can help in many cases, other types of support are, as the right reverend Prelate and the noble Baroness discussed, important for bereaved people. In 2021, research indicated that, for every Covid-19 death, there were up to nine people affected by bereavement, highlighting the importance of bereavement care. There are those who are still experiencing ongoing bereavement. As I say, it took me two years, and there are others who still have not found closure in their own lives on these issues. It is really important that they continue to receive the necessary support and care.
The world-renowned Mayo Clinic has defined “ongoing bereavement” as when
“feelings of loss are debilitating and don’t improve even after time passes”.
We are often told that time heals all wounds; in many cases, those wounds still have not healed for people. Many of us have lost loved ones or friends, but those with ongoing bereavement find it incredibly difficult and challenging to get on with their daily lives and to do even the simplest things.
Noble Lords may be aware that the very first recommendation of the UK Commission on Covid Commemoration was the introduction of a UK-wide day of reflection, to be held on the first Sunday of March, to commemorate the anniversary of the first lockdown. The report says—I think it is worth repeating—that this is to
“remember and commemorate those who lost their lives since the pandemic began … reflect on the sacrifices made by many, and on the impact of the pandemic on us all … pay tribute to the work of health and social care staff, frontline workers and researchers … appreciate those who volunteered and showed acts of kindness during this unprecedented time”.
I know that in all our faiths there are always references to small acts of kindness, and we saw some amazing acts of kindness throughout, even though it was a horrible time and a time of great grief and uncertainty for many people. We welcome the Government’s decision to continue the commitment of the last Government to commemorate this anniversary. It is important to remember all those who were lost, and the Government should be credited with continuing to recognise this.
One topic I would like to ask the Minister about is bereavement education, which was raised by both the right reverend Prelate and the noble Baroness. As others have said, in many cultures, death may be celebrated or simply accepted as part of the circle of life, with young children attending funerals or ceremonies to understand the inevitability of death. In our culture, we are not so open about these issues. We often do not deal with death until a friend or loved one passes away, especially when it is unexpected.
I sometimes think about the New Orleans funerals: they start off in a very sombre mood, with marching, but then suddenly the mood changes to one of a celebration of a life. I have often said to my wife—I do not envy her, if she survives me—that I want a combination of a Muslim funeral and a New Orleans funeral. I am not sure how that would go down, or whether the imam would appreciate the switch-over. We should celebrate life, and make sure that we remember to discuss death earlier in our lives.
I was a bit worried about making people laugh, because, until now, it felt as though we were at a funeral, but I am very pleased that we can have a laugh. Sometimes people laugh when they celebrate a life; they tell stories and have fond memories of the person who has passed away. That is a wonderful way of making sure that we celebrate people. As the noble Baroness, Lady Brinton, said, faith leaders—indeed, the right reverend Prelate is one herself—are very good at helping families to face grief and bereavement.
What more can be done? On the review of the relationship, sex and health education—RSHE—statutory guidance, can the Minister update the House on whether some thought is being given to include specific content on grief and bereavement education? If not, can she share any current thinking on the options being considered? Both the right reverend Prelate and the noble Baroness discussed the importance of this. Sometimes, it is not very easy to do that in a top-down, government-led way, so how do we create a space to ensure that we talk about these issues? I know it is not an easy subject to tackle, and it needs to be treated with the utmost sensitivity. Anything that the Minister can share with us today, or in writing later, would be gratefully received.
Finally, given the importance of the issues that we have discussed in this debate, can the Minister give the House a firm date for when a response to the UK Commission on Covid Commemoration’s final report will be published?
The subjects we are discussing are part of an understandably complex and sensitive area. We were all touched by Covid, either directly or indirectly. We all lost loved ones or friends, or we heard stories from those who did, and some of us suffered from delayed or extended bereavements. The best thing we can take from the debate is this: let us not forget those who passed away; let us not forget those who are still suffering from the effects of long Covid; and let us not forget those who are still experiencing bereavement.
My Lords, I too congratulate the right reverend Prelate on securing this important and touching debate, which was somewhat inevitable, considering the subject. I acknowledge her ongoing dedication. Since chairing the UK Commission on Bereavement and the publication of the report, the right reverend Prelate and the commission have continued to champion this important issue. I am very happy to agree to the meeting that she requested.
I am grateful to the noble Lord and the noble Baroness on the Front Benches, not only for sharing their personal experiences and reflections, which is what this subject is about, but for raising the points that they did. I know that they, like me and the right reverend Prelate, want to improve support for those who are bereaved.
The right reverend Prelate made the very good point that there is bereavement through the loss of a loved one, but there is also bereavement through the loss of what might have been. One such example of that, writ large, is those who have long Covid—and I am sure that we can all think of others. It is always right to think about loss in those terms. As has been said, we all have and will experience grief through the course of our lives. It is absolutely vital that bereaved families and friends have access to the support that they need, and when they need it. That can come from a variety of sources, as noble Lords have described, and I will return to that later.
I assure your Lordships’ House that the Government are looking for the best ways to support those in grief, including those bereaved as a result of Covid-19. On behalf of the Government, I also associate myself with the thanks to those who provided services with full public spirit, no matter what sector they were from. Whether private, public, charitable or voluntary, they were public spirited to the core and they kept us going. I am deeply grateful. I also reiterate the condolences to all those who were bereaved and all those who suffered loss of some kind and have been affected by the pandemic.
Noble Lords have referred to the day of reflection. This year marked the fifth such event since the outbreak of the pandemic. As we have heard, it is a significant milestone and an opportunity to form one’s thoughts, memories and actions as we remember all those who were affected.
The noble Baroness, Lady Morgan of Cotes, chaired the UK Commission on Covid Commemoration to consider appropriate ways to remember those who have died and how we should mark such a sombre time in our history. Of course, it is not history for those who are bereaved; it continues to be with them. I thank the noble Baroness, Lady Morgan, and the commission for their extensive work in speaking with those who are most impacted by the Covid-19 pandemic, including representatives from bereaved family organisations. I am grateful to those organisations for their work.
The commission’s first recommendation of 10 is that:
“A UK-wide day of reflection should be established and held annually on the first Sunday of March”.
On 9 March this year there were more than 200 events in communities across the country, and we saw how important this day was to so many. The noble Lord, Lord Kamall, asked about a day of reflection in the future. We see how much this day matters to people and how many communities took part, and I thank all those local organisations and communities for contributing to that. We very much hope that will create a foundation for future years.
The day of reflection allowed people to remember the many losses in a way that was appropriate and meaningful for them. It struck me to be very much in contrast to our experiences during the pandemic, which for that period of time were ones of isolation, separation and the loss of the lives we used to lead. There was close working with charities, faith groups and other voluntary, community and social enterprise organisations. That was very much the mark of the day of reflection, and I appreciate the role of those organisations, not just in the day of reflection but in supporting those who experience grief. I am sure we all pay tribute to them and their work.
In Sheffield the city council continues to work in partnership with Compassionate Sheffield, which aims to improve people’s experiences of life, loss and death. Access to support is certainly important; it has been referred to throughout this debate. To give just one example, of which noble Lords will be aware, the Government are prioritising funding to expand NHS talking therapies. That is something to which people can self-refer, or they can consult their GP in order to get to that point, and it is a tremendous service for people.
The noble Baroness, Lady Brinton, rightly referred to the issue of children and young people’s mental health. Again, I mention the expansion of mental health support teams in schools, putting in place Young Futures hubs, which will provide access to mental health support, and the recruitment of 8,500 new mental health workers to treat children and adults. In all these ways, we hope to support children and young people who are bereaved.
On the point the noble Baroness, Lady Brinton, raised about PPE, we are responding to each of the reports from the inquiries, and that will be dealt with. I totally agree about keeping people safer and the matter of Zoom. That has provided comfort in a way we could not possibly have anticipated. I noted her comments about ads for very cheap funerals, and I will raise them with the appropriate ministerial colleagues.
The noble Lord, Lord Kamall, talked about culture. Indeed, different religions and communities have different cultures. As he will know, in the Jewish tradition, it is tradition to sit shiva for around a week, where support can be freely given by visiting the home of the bereaved. As my noble friend Lady Anderson reminded me, it is hard to get a group of people together and not feel some form of celebration while giving that support. All these models are ones that we can look to.
On the points made about long Covid—which is a very real issue and will not be going away—we have invested £314 million to expand treatment and rehabilitation services and established 100 long Covid services for adults and 13 specialist paediatric hubs for children and young people. They assess people with long Covid and direct them into ways of care, to provide the right support, treatment and rehabilitation. We have also invested £50 million in 22 research projects for long Covid. In all this, I hope people can be reassured that we continue to support people.
On the question about adding bereavement to the national curriculum, we are reviewing the RSHE curriculum and will look carefully at responses to the consultation on the draft revised RSHE statutory guidance, which ended in July. I will take a particular interest, with my ministerial colleagues, about where that sits.
My department brings together government colleagues to discuss bereavement as part of a government working group on bereavement. It is a forum to share best practice. Today’s debate will feed into that very well. We take the reports from the UK Commission on Bereavement very seriously and continue to engage with them.
On the right reverend Prelate’s point about end of life, dying well is a fundamental right in regard to human dignity and compassion. We have a responsibility to ensure the best possible care. That includes supporting families and carers, including young people, who are involved in that.
NHS England has developed guidance to support ICBs with their duty to commission palliative care services within integrated care systems. That guidance requires commissioners to ensure that significant access to bereavement services be available for families and carers, including children and young people.
I turn to ongoing research. The pandemic made clear the need for bereavement services to offer both practical and emotional support, as noble Lords have referred to. Noble Lords will not be surprised that not everybody knows about these services. Many services are particularly not reaching those from ethnically diverse communities. Through the National Institute for Health and Care Research, the Government have commissioned a study investigating how to improve bereavement services for those from ethnically diverse groups. That includes those from black African, black Caribbean, Pakistani, Bangladeshi, Indian, Somali, Chinese and Roma backgrounds. I certainly look forward to the study’s findings, which will be published later this year.
Finally, we need to take an evidence-based approach to health, and NICE balances best care with value for money across the NHS. Decisions on whether NICE will create new or update existing guidance are overseen by a prioritisation board chaired by NICE’s chief medical officer, and the prioritisation board is considering bereavement as a potential topic for guidance development.
In reiterating my sympathies to all those who were bereaved and all those who continue to be affected directly or indirectly by the Covid-19 pandemic, I feel that it is incumbent on us to look to make further progress on bereavement support services. I look forward to continued cross-government working—and, I am sure, cross-party working—to achieve this.