How to respond

The following sections ask for evidence relating to each of the commission’s key themes. Each section provides some key questions for guidance. There is a word limit of 700 words for your response to each section.

In submitting your evidence please:

• keep what you write relevant to the work of the commission and for each of the themes, and indicate which questions you are responding to in each section
• collate responses from others in your organisation if you wish
• please share examples to illustrate the issues you raise, but include no personally identifiable details about anyone with whom you work

There is also an opportunity at the end to share anything else which you would like to tell the Bereavement Commission about how people affected by bereavement could be better supported in the future.

You also have the opportunity to opt in your organisation's name listed as a contributor, which will be included in the interim and final report.

You do not need to respond to all the questions - answer only those which are relevant to your work.

The call for evidence will now close on Sunday 16th January 2022

 

 

Background to the Key themes

Public attitudes across diverse communities to grief, bereavement, support and help-seeking

Several studies reviewing public attitudes towards death, dying and bereavement highlights strong evidence[i] that death remains a difficult topic for discussion, which affects attitudes towards grief and bereavement and can act as a barrier to people accessing bereavement support, both from professional services and friends and family. Ongoing national research with people bereaved during the pandemic has found that people still felt uncomfortable about reaching out for help[ii], despite larger numbers of people needing the support[iii]. Campaigns aimed at raising awareness of death, dying, grief and support are useful, although assessing the impact of these campaigns is challenging. A review by the Joseph Rowntree Foundation highlights effective elements of campaigns that change public attitude, which could be useful for the bereavement sector.

Capacity of communities and existing social networks (including schools and employers) to support grieving members

Employers need clear guidance and support to help their employees manage the impact of grief and bereavement. Publications provided by business support organisations during the pandemic have highlighted the need for compassion alongside clear policy[iv]. Recent attempts to influence and legislate for minimum bereavement leave indicates the discretionary ‘compassionate leave’ often offered may not be fit for purpose. Parental Bereavement Leave, introduced in April 2020, offers two weeks leave due to the death of a child under the age of 18, while Sue Ryder’s campaign is aiming to extend this type of bereavement leave for partners or a close family member.

Schools have a dual role to play in promoting emotional well-being around bereavement. Around 1 in 29 school-age children and young people (age 5-16) have been bereaved at some point in their childhood of a parent or sibling – roughly one per class[v]. Given the numbers of children who will experience bereavement during childhood, there is a strong case for them to learn about some of the common feelings associated with loss. The inclusion of loss and bereavement within a PHSE curriculum can help to dispel myths and taboos, although there no current standard for teaching these topics. Child bereavement charities have responded by developing PHSE lessons around bereavement and loss^[vi], although it could be argued that a whole school approach is needed: proactive and flexible pastoral support, a system for managing and communicating important information about bereavements, staff training and support, and policy development[vii].

[i] Several surveys about public attitudes to death and bereavement can be found at Appendix 2.

[ii] Harrop E., Farnell D., Longo M., Goss S., Sutton E., Seddon K., Nelson A., Byrne A., Selman L.E. ‘Supporting people bereaved during COVID-19: Study Report 1’, 27 November 2020. Cardiff University and the University of Bristol. (Pre-print)– 27% of people surveyed felt unable to ask for help and support beyond friends and family.

[iii] Harrop E., Farnell D., Longo M., Goss S., Sutton E., Seddon K., Nelson A., Byrne A., Selman L.E. Supporting people bereaved during COVID-19: Study Report 1, 27 November 2020. Cardiff University and the University of Bristol. (Pre-print)– Excess deaths over Covid-19 would suggest that 2.6 million people have been bereaved during the pandemic.

[iv] Examples of guidance can be found in Appendix 2.

[v] CBN produces regular statistics although no official data is collected annually on the number of children whose parent dies, nor those bereaved of a sibling or someone else close.

[vi] Child Bereavement UK, Winston’s Wish and Sudden all have lesson plans and other resources.

[vii] CBN offers a whole school approach.

Practical bereavement support 

Planning ahead and preparing for death and bereavement

Planning ahead and preparing for death and bereavement remains an uncomfortable task, with the number of people who have not made a will appearing consistently high[i].  This results in bereaved family and friends having to sort out legal and financial matters, as noted below. There are regular campaigns aimed at the general public to raise awareness and highlighting the positives of being prepared, including Dying Matters, Demystifying Death Week, Free Wills Month and the Plan If website, but evidence of the impact of these campaigns on people’s preparedness is limited. The pandemic may have prompted a change in attitude for some people[ii], but it is too early to confirm if this will be a lasting change. 

Within healthcare systems, Advanced Care Planning (‘ACP’) supports better outcomes in bereavement[iii], although uptake of ACPs across the UK are concerningly low[iv]. The recently relaunched Ambitions Partnership for Palliative and End of Life Care includes a statement noting that ‘good care involves bereavement’. The campaign ‘What Matters Conversations’ aims to reframe Advance Care Planning to include those elements that matter most in people’s lives, including their family and friends.

Administration and practical tasks following a death

The administration and practical tasks, particularly in dealing with the deceased’s affairs, can be a long and painful process. There are a number of specific organisations to support this, although the replication of similar services indicates that this area lacks a unifying approach. The government’s Tell Us Once service can allow you to report a death to most government organisations in one contact. This service is usually signposted during the registration of the death. For other services including banks, building societies, media companies, insurance companies, there are at least three schemes that you can use: the Death Notification Service, Life Ledger and Settld.

Cruse’s campaign Bereaved Customers First is working towards better treatment for all bereaved customers. Settld also wants to ensure that this process is as easy as possible, and along with Cruse, Sue Ryder and Marie Curie, are calling on the government to introduce a new set of agreed standards for commercial service providers.

Financial impact of bereavement (including funeral poverty, social security, employment)

The Government reformed bereavement benefits in 2017, when Widowed Parents Allowance - a benefit that offered continuity of income - was replaced by Bereavement Support Payment (BSP), a short-term grant offering payments over 18 months. There is concern that BSP does not provide enough financial relief for families[v].

Additionally, there are other groups who are currently ineligible for bereavement benefits: in particular those who were living with but not married to their partner (which is currently being amended). Other cohorts of concern include the children of divorced parents, whose non-resident parent dies, and those who have no recourse to public funds and therefore cannot claim higher rate BSP because of the necessity of being eligible for Child Benefit.

Universal Credit claimants will also usually be required to look for work six months after the death of a loved one. It has been argued that the six month “easement” available to claimants, to exempt them from having to look for work, may be appropriate for some but may fail to take account of households’ different circumstances[vi].  If bereaved claimants fail to meet their conditionality requirements after this point then they may have their benefits stopped.

Finally, funeral poverty highlights the increasing cost of funerals in the UK – with 9% of families unable to meet the full cost of a funeral in 2020. This additional financial stress may compound the experience of bereavement, including feelings of guilt and shame for failing to provide a meaningful tribute to the person who has died.

[i]  Separate research from 2017 and 2020 report the same statistic, while there is no publicly held information about the numbers who die intestate in the UK.

[ii] Wealth Advisor, ‘Thirty one million adults don’t have a will in place says new research’, 28 September 2020, Accessed 1 July 2020

[iii] Detering KM, Hancock AD, Reade MC, Silvester W. ‘The impact of advance care planning on end of life care in elderly patients: randomised controlled trial’. BMJ. 2010 Mar 23;340:c1345. DOI: 10.1136/bmj.c1345. PMID: 20332506; PMCID: PMC2844949

[iv] Knight T, Malyon A, Fritz Z, Subbe C, Cooksley T, Holland M, Lasserson D ‘Advance care planning in patients referred to hospital for acute medical care: Results of a national day of care survey’ The Lancet, 19 January 2020, DOI: 10.1016/j.eclinm.2019.12.005

[v] Internal study conducted by CBN and WAY Widowed and Young, 2020

[vi] Bereavement Support Payment - Work and Pensions Committee - House of Commons (parliament.uk)

Infrastructure and intervention

Capacity of health, social care and other services to support bereaved people

There is a strong intention to provide appropriate support for bereaved people as they pass through health and social systems. The Bereavement Care standards, developed in 2014, offer a clear approach for NHS and voluntary services. The voluntary sector has also provided clear frameworks for bereavement support: earlier projects by Hospice UK proposed a framework for bereavement assessment and more recently, the sector responded to Covid-19 with resources to support bereavement services. The National Bereavement Care Pathway for Pregnancy and Baby Loss offers nine standards including that a parent-led bereavement care plan is in place for all families. Take up of the voluntary pathway has been encouraging, with 63% of English NHS Trusts adopting the pathway. A similar bereavement care plan for families is found in Together for Short Lives’ Core Care Pathway for Children and Young People.

With useful frameworks in place, it falls to the bereavement sector to highlight capacity and outcomes. However, despite concerted attempts to focus on outcome reporting, this remains patchy and the sector as a whole does not present consistency around outcomes or effectiveness. There are no nationally collated figures for those who use bereavement services, with the VOICES survey not recommissioned after 2015. Additionally, questions repeatedly arise around key elements of bereavement support including the timing of said support, cost effectiveness versus effectiveness of delivery and equity of access. As highlighted below, equity of access is of real concern for people who have been least well served.

Finally, many bereavement services operating in the third sector rely on fundraising and volunteers to ensure both capacity and security of support. Before the pandemic, this was manageable but the impact of social distancing and lockdown measures has negatively impacted bereavement services ability to be self-sufficient. A third of managers of bereavement services surveyed in 2020 expected income to drop by 25% or more[i] – resulting in the potential withdrawal or reduction in services against an expected rise in demand.

Access to bereavement support

Before the pandemic, between 20 and 30% of bereaved adults were not getting the emotional support that they would like from organised services - beyond their family and friends[ii]^,[iii]. There is evidence that those in greatest need may be more reluctant to seek help[iv]. National monitoring data on access to bereavement services for particular groups is lacking, but evidence from similar health and social care services (palliative care and mental health services) suggest that there are particular barriers to accessing support for those from ethnic minority communities[v][vi][vii][viii].

This lack of access has a number of causes. First, people may not be aware of the concept of bereavement support, or of the services that are available. While some services reach out proactively to bereaved people, others rely on self-referral or referral from third parties such as registrars, funeral directors, GPs and family members. The signposting websites AtALoss.org and the Good Grief Trust have helped improve awareness of services in recent years but many people still struggle to hear about support of the type they want.

Second, even where services are known and wished for, there are other barriers to access and the following can exclude people from getting support, both in the early days of grief or later on as the initial shock and disruption eases:

• the stigma of seeking support
• the lack of provision of targeted and specialist interventions
• limited catchment areas
• long journey times
• referral procedures
• waiting lists (particularly for 1:1 support)
• restrictions on the number of sessions

Coordination between agencies supporting people affected by bereavement

As outlined in previous sections of this note, people who have experienced bereavement may have many different but simultaneous support needs – including emotional, social and practical support.  As a result, support is often provided by a number of different services at the same time. Good coordination and engagement between services is critical – not least to minimise the number of times someone who has experienced bereavement needs to tell their story.  However, often (and partly related to the capacity of the sector) coordination between different agencies is poor.

There is a real need to review what could be done at both a local and a national level to improve interagency working and to ensure that people affected by bereavement are provided with holistic support to address the different challenges they face.

[i] NBA, Covid 19: the response of voluntary sector bereavement services, 2020, p. 23

[ii] Around 20% of people who register a death say that they would have liked to talk to someone about their feelings about the illness or death, but they did not get this chance. 13.3% did get to speak to someone, and 66.3% had not wanted to (Office for National Statistics National Survey of Bereaved People (VOICES) 2015)

[iii] Sue Ryder found that only 9% of the adults they polled about their experiences of bereavement in the last 5 years had received any support aside from that provided by family or friends. 31% of those who did not receive any formal support said that it would have been helpful[iii] (i.e. 28% of those who had been bereaved). Sue Ryder  (A better grief 2019).

[iv] Lichtenthal WG, Nilsson M, Kissane DW, BreitbartW, Kacel E, et al. Underutilization of mental health

services among bereaved caregivers with prolonged grief disorder. Psychiatr Serv. 62: 1225–1229. (2011) doi: 10.1176/appi.ps.62.10.1225 

[v]Calanzani, N., Koffman, J., & Higginson, I. J. Palliative and end of life care for Black, Asian and Minority Ethnic groups in the UK (2013) London: Marie Curie

[vi] Bignall T, Jeraj S, Helsby E and Butt J Racial disparities in mental health: literature and evidence review (2019) London: Race Equality Foundation

[vii] Baker C Mental health statistics for England: Prevalence, services and funding Briefing paper 6988 (2018) House of Commons library

[viii] Mayland CR, Powell RA, Clarke GC, Ebenso B, Allsop MJ Bereavement care for ethnic minority communities: A systematic review of access to, models of, outcomes from, and satisfaction with, service provision. PLoS ONE 16(6): e0252188. (2021) doi.org/10.1371/journal.pone.0252188

The impact of the pandemic

Challenges

Covid-19 has impacted bereavement in several significant ways. Firstly, there has been in an increase in the number of unexpected and complex deaths. Risk factors associated with poor bereavement outcomes, such as traumatic deaths and social isolation, are heightened due to Covid-19 and associated social and clinical restrictions[i], meaning that the usual proportion of bereaved adults who are likely to need more support than their family or friends can provide will be higher. In usual times, this is estimated at 40% of the general population of bereaved people but 55% of those bereaved unexpectedly. In the national survey of people bereaved during the pandemic in the UK, only 29% felt adequately supported by friends and family[ii]. People bereaved by Covid-19 have higher levels of grief in the first six months of their bereavement than those bereaved of other natural causes – levels that are similar to those bereaved of unnatural causes. Acute grief in the first six months is a predictor of complicated grief further down the line[iii]. 

Additional challenges for those bereaved during Covid-19 are known to include disrupted rituals[iv], thwarting of social support including isolation and loneliness, economic pressures for families, grief at a time of general fear and a lack of capacity in services, in particular for delivering in-person support.[v]

Inequality

The National Bereavement Alliance (‘NBA’) identified four priority groups who were most at risk in terms of poor bereavement outcomes during the pandemic.  This included:

• those from Black, Asian and other minority ethnic communities (B.A.M.E) communities, and certain occupational groups
• those groups facing the greatest impact from social distancing, including those who live alone following their bereavement, or who lack support
• those groups who already faced barriers to accessing bereavement support prior to the pandemic, including those from B.A.M.E communities, children and young people, those with a learning disability, those experiencing homelessness
• those facing particular risks in their bereavement, including those whose finances are insecure; those facing multiple, sudden and/or traumatic bereavements; and those who have pre-existing mental or physical health difficulties.[vi]

Innovation

In surveying voluntary bereavement services, recent surveys[vii] highlighted how services had adapted in response to the challenges posed by lockdown measures and social distancing including: developing services specifically for those in early bereavement, establishing new telephone support lines, adapting 1-1 services online or via telephone as necessary, adding content and functionality to websites, including integrating services such as GriefChat function, and widening access to existing services, for example extending support following specific causes of death to include Covid-19.

Additional innovations were seen in the rapid development of high-quality psychoeducational web and print information on bereavement e.g. on self-care, supporting bereaved children, and supporting grieving friends during the lockdown; and significant public facing campaigns around collective national activities on grieving and remembrance[viii].

Technology

As indicated above, technology has been used proactively as a resource and platform for voluntary sector bereavement services during the pandemic. Commonly described positives around the use of technology included accessibility for certain groups, although the impact on privacy and confidentiality during lockdown restrictions and home-schooling impacted others’ ability to join virtual support sessions. For example, those home-schooling children during lockdown or working in shared offices,[ix] while support for children and young people has not necessarily benefitted from using technology and some people in later life are also digitally disconnected.

 

[i] Harrop E., Farnell D., Longo M., Goss S., Sutton E., Seddon K., Nelson A., Byrne A., Selman L.E. ‘Supporting people bereaved during COVID-19: Study Report 1’, 27 November 2020. Cardiff University and the University of Bristol. (Pre-print).

[ii] Harrop E., Farnell D., Longo M., Goss S., Sutton E., Seddon K., Nelson A., Byrne A., Selman L.E. ‘Supporting people bereaved during COVID-19: Study Report 1’, 27 November 2020. Cardiff University and the University of Bristol. (Pre-print)

[iii] NBA, Covid 19: the response of voluntary sector bereavement services, 2020, p. 16

[iv] Mayland C, Hughes R, Lane S, McGlinchey T, Donnellan W, Bennett K, Hanna J, Rapa E, Dalton L, Mason SR Are public health measures and individualised care compatible in the face of a pandemic? A national observational study of bereaved relatives’ experiences during the COVID-19 pandemic, Palliative Medicine, 31 May 2021, https://doi.org/10.1177/02692163211019885

[v] Harrop E., Farnell D., Longo M., Goss S., Sutton E., Seddon K., Nelson A., Byrne A., Selman L.E. ‘Supporting people bereaved during COVID-19: Study Report 1’, 27 November 2020. Cardiff University and the University of Bristol. (Pre-print)

[vi] NBA, Covid 19: the response of voluntary sector bereavement services, 2020, p. 18

[vii] Pearce C, Honey JR, Lovick R, et al ‘A silent epidemic of grief’: a survey of bereavement care provision in the UK and Ireland during the COVID-19 pandemic BMJ Open 2021;11:e046872. doi: 10.1136/bmjopen-2020-046872

[viii] NBA, Covid 19: the response of voluntary sector bereavement services, 2020, p. 20

[ix]Harrop E., Farnell D., Longo M., Goss S., Sutton E., Seddon K., Nelson A., Byrne A., Selman L.E. ‘Supporting people bereaved during COVID-19: Study Report 1’, 27 November 2020. Cardiff University and the University of Bristol. (Pre-print)

Other reflections

Bereavement can affect every aspect of a person’s life – from their relationships and mental health, to their finances and employment.  This call for evidence sets out some of the areas the commission believes are important to explore, but we know that many important issues will have been missed.

We want to hear about any other issues related experiences of, and support available for, people affected by bereavement, which you think are important for the commission to consider.