Written evidence submitted by National Bereavement Alliance (PLC0040)

Evidence for the Health and Social Care Select Committee Inquiry into Palliative Care

We are grateful to be able to submit evidence to the Inquiry. Our response focuses on four areas:

• The importance of recognising and prioritising support for family and friends as an integral part of palliative care
• Public health approaches to bereavement
• Availability and accessibility of support services for bereaved adults and children
• Whole school approaches to bereavement: pastoral support and grief education.

Importance of recognising support for family and friends as an integral part of palliative care

The World Health Assembly’s definition of palliative care (2014) places patients’ families firmly at the heart of this approach:

that improves the quality of life of patients (adults and children) and their families who are facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual;

The Ambitions for Palliative and End of Life Care also recognises the importance of caring for families and friends as an integral part of palliative care:

Good palliative and end of life care includes giving care and support to families, friends, carers and all those who are important to the dying person. This must encompass good bereavement and pre-bereavement care, including for children and young people. It must also respond to the needs of those who are affected by death caused by sudden illness or trauma, including suicide. As well as caring for them as individuals who are facing loss and grief, there needs to be recognition and support for their role as part of the person’s caring team, if they and the dying person wish them to be regarded in that way. (p15).             

This focus on the needs of the family and friends is important for two reasons:

• the challenges and risks that bereavement brings to children and adults
• the reassurance to the person who died.

Challenges and risks of bereavement

Left unsupported, bereavement is associated with increased risks to health and wellbeing, including mortality, physical health problems, physical disability, medication usage and hospitalisation (Stroebe et al., 2007). Widow(er)s (Stroebe et al., 2007) and children bereaved of a parent (Lloyd-Williams et al., 2011) are more likely to visit their GP. Pre-pandemic, these increased health costs and reduced tax revenues were estimated to cost the UK economy £23bn and HM Treasury nearly £8bn annually (Sue Ryder, 2020).

NICE guidance and the public health bereavement model suggest that pre-pandemic, around 30% of closely bereaved people needed organised, preventative support opportunities. A further 10% struggled with complex or prolonged grief, needing specialist grief or mental health interventions. Risk factors for these more complex grief reactions include a number of areas where good palliative care can make a difference, including

• high levels of pre-loss grief or depression symptoms
• lower income
• a problematic relationship with the person who died
• lower levels of social support
• lack of family cohesion
• unresolved prior losses (Burke & Neimeyer, 2013; (Buur et al., 2023).

Marie Curie’s recent Better End of Life Report 2024 found that almost one in six of their 1158 nationally representative bereaved respondents had complex grief reactions (n = 182, 15.6%). These were associated with care experiences and support from services before bereavement. Nationally representative respondents who reported being unhappy with aspects of care had higher levels of complex reactions, as did those who reported that healthcare professionals had not listened to or communicated well with them and/or the person who died (Johansson et al., 2024).

These prolonged and complex grief reactions are themselves associated with worse mental and physical health including sleep problems and suicidal ideation, lower quality of life, poorer functioning and ongoing difficulties (de Lang et al., 2023; Maccallum & Bryant 2020; Prigerson et al., 2021; Sekowski & Prigerson, 2022).

Reassurance for the dying person

When 340 patients with advanced illness were asked about the importance of various attributes of experience at the end of life, 88% rated being able to help others as important, and 85% rated feeling that one’s family is prepared for one’s death. These were more strongly endorsed as important than having one’s treatment preferences in writing (81%), having a chance to talk about the meaning of life (58%), and dying at home (35%) (Steinhauser et al., 2000).

Lack of prioritisation

While family and friends are included in the definitions of palliative care noted above, there are concerns about the degree to which this is prioritised at a local level. Despite the duty on Integrated Care Boards to commission a sufficiency of palliative care services, including bereavement services, in 2023 only 25% of published Integrated Care Strategies had any reference to bereavement (National Bereavement Alliance, 2023). Prior to the pandemic, around 20-30% bereaved adults were unable to access the support they needed (ONS, 2015; Sue Ryder, 2019).

We recommend that support for family and friends before and after a death is explicitly included and prioritised in any guidance and planning around palliative care.

Public health approaches to bereavement

Many people manage the challenges of caring, and of grieving, with their own inner resources and the support of their social networks. But others struggle to get the support they need, and this can put them at increased risk of poor health and other outcomes.

The relevance of social determinants to the health outcomes of bereavement mean that we should address these as well as the individual difficulties that people might experience.

In the words of the UK Commission on Bereavement’s report, bereavement is everyone’s business. As discussed, most people will manage with their own inner resources and the support of family and friends. Yet over a quarter (28%) of adults responding to the UK Commission on Bereavement received no support from family after their bereavement, and almost half (46%) received no support from friends.

The range of support available to bereaved people should include compassionate community approaches that reduce loneliness and educate people about their grief and ways of coping, supportive workplaces and schools, through to organised support services offering 1:1 and group support, and strong referral pathways into mental health service for those that need it.

Palliative care services can play a key role in activating citizens to support one another following grief. This could include sharing knowledge about grief to help educate people about their own and others’ reactions, providing opportunities for people to meet one another through grief cafes, bereavement help points and other informal opportunities, and promoting a grief literate society. These approaches can strengthen networks and build the capacity of communities to support one another (Rumbold and Aoun, 2014). Local models of integration can bridge the gaps between the range of community assets that can support bereaved people.

Availability and accessibility of support services for bereaved adults and children

Meta-analyses have shown that treatment interventions can effectively diminish the symptoms problematic grief (Wittouck et al., 2011) lowering the cost on UK society and the economy.

The lack of availability of support services has been described above. Even where services exist, people face significant barriers in accessing support. Among those who wanted formal bereavement support, 37% of respondents to the 2022 UK Commission on Bereavement reported they didn’t know what support was available or how to access it; 33% said it wasn’t available, 26% didn’t feel comfortable asking for help and 20% didn’t believe the support would help them. Others reported that support was not available at the right time, was not appropriate for their individual needs (including age, ethnicity, religion and type of death) or was insufficient in length and duration (UK Commission on Bereavement, 2022). Those most in need of support may be least likely to seek it out – indicating a proactive approach to support (Prigerson et al., 2001).

Many families struggle to find the help they need for their children. Prior to the pandemic, waiting lists for child bereavement services were increasing and there were already concerns about access. The pandemic exacerbated existing inequalities. Services are now faced with greater numbers of bereaved children and young people, grieving more difficult deaths. Lockdowns made community fundraising more difficult and many services report reduced and precarious income (Penny and Nibloe, 2020).

Even where services are available, families may struggle to find their way to them, or they may be provided in ways that do not match children’s needs, with some groups being particularly underserved.

There are a number of specific challenges to getting timely, appropriate emotional support, with corresponding enablers.

The lack of awareness could be tackled by consistent, high-quality information about grief and the sources of support available. For example, the signposting website AtaLoss provides information about the range of services available nationwide: all Medical Examiners and their officers could provide information to grieving families. We would like to see more proactive approach to offering support trialled, for example through social prescribing teams and other routes, to evaluate their preventative effectiveness.

The lack of availability could be addressed by consistent funding for bereavement services. Despite the new requirement on Integrated Care Boards (ICBs) to commission a sufficiency of palliative care services, including bereavement services, funding streams remain patchy and precarious. A clearer mandate to ICBs about their responsibilities to commission and provide bereavement services for children and adults in their system would help to address this.

The lack of appropriateness could be addressed by more flexible services that are designed around bereaved adults and children. This may include a menu of support including group activities, 1:1 support and social activities, tailored through a careful shared assessment. This type of support may be more complex to plan, monitor and evaluate, and will require imagination and flexibility on the part of commissioners and funders. NHS England should encourage commissioners to use the National Bereavement Alliance’s Guide to Commissioning Bereavement Services in England (2023) to set their vision for bereavement support locally and to shape tender documents, and the Bereavement Support Service Standards (2024) to drive quality in the sector.

Bereavement support can fall short for those from diverse ethnic, religious and cultural backgrounds, and the NHS should respond to the forthcoming recommendations from the NIHR-funded Equitable Bereavement Support for All project as a first step to redressing these inequities.

Whole school approaches to bereavement: pastoral support and grief education

In the absence of annual statistics, the Childhood Bereavement Network has estimated that over 46,000 children and young people are bereaved of a parent each year in the UK - that is around 127 each day (Childhood Bereavement Network, 2023). Data from representative samples suggest that around 1 in 29 children and young people in school today have been bereaved of a parent or sibling at some point in their childhood – that is roughly one per classroom. 70% of primary schools have at least one recently bereaved pupil on roll (Holland 1993).

This means that all schools are likely to be touched by bereavement – and these ripples of grief can be felt across the school community.

Anticipating or experiencing the death of someone close can have a profoundly disruptive impact on children and young people’s engagement and achievement at school. As well as providing important social networks and stability, schools and colleges are places where children and young people must study and perform. These settings have a key role to play in providing the network of support around grieving pupils.

The death of someone important has implications for children and young people’s ability to function and achieve in school (McLaughlin et al, 2019).

• Nationally representative samples in the US and Denmark have found that
• the sudden death of someone close is associated with lower academic achievement, lower ability to concentrate and learn, less enjoyment of school, lower school belongingness, and lower beliefs that teachers treat young people fairly (Oosterhoff et al., 2018)
• parentally bereaved children and young people are less likely to complete every level of education from secondary school to university (Høeg et al., 2019).
• Parentally bereaved young people’s GCSE scores are an average of half a grade lower than their non-bereaved peers. Girls bereaved of a sibling scored almost a full grade below their matched controls (Abdelnoor et al, 2004).                                                                
• Children and young people report difficulties concentrating and learning after a parent dies (Worden, 1996).
• The death of a parent by the age of 16 is associated with women failing to gain any sort of qualification, and both men and women being unemployed at the age of 30 (Parsons, 2011).

Consistent evidence across the last two decades indicates not only a persistent discomfort in society in talking about death, dying and bereavement but also support for grief education from a variety of key stakeholders, including parents (Goss et al., 2024), teachers (Gordon, 2023) and children and young people themselves (Votes for Schools, 2023).

Research from leading experts in childhood bereavement suggests grief education is an essential component of the taught curriculum, highlighting that a proactive approach can offer protective factors for children, young people, their families and wider communities (including educational settings and local communities) (Dawson et al, 2023). Grief education can be an effective approach that pre-emptively supports children to cope with facing bereavement and could be a protective factor against further consequences of bereavement, including social isolation and bullying (Joy et al., 2024).

Grief education would also empower teachers and other school-based staff, who can feel ill-equipped, unprepared, and uncomfortable conversing with children about death, which limits their engagement (Paul et al., 2023). These concerns were mirrored in the recent Public Attitudes to Death and Dying (PADD) UK survey (Goss et al., 2024), with respondents agreeing that support for teachers around this important topic was vital, regardless of school age (79% of primary school respondents and 82% of secondary school respondents).

Just under half (49.0% n = 97/198) of the bereaved children, young people and adults who shared their experiences with the UK Commission on Bereavement said they got only a little or no support from their education setting after their bereavement (UK Commission on Bereavement, 2022).

The Commission recommended that all education establishments should be required to have a bereavement policy including staff training, and a process for supporting bereaved children and their families.

It also recommended that all schools and other education settings must be required to provide age-appropriate opportunities for children and young people to learn about coping with death and bereavement as part of life. Direct references to death, dying and bereavement were included as proposed revisions to the statutory guidance on Relationships, Sex and Health education in spring 2024 (Department for Education), which we welcomed, but no formal government response has yet been published to the consultation, following the General Election.

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