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This report describes the diversity of experiences of people with life-limiting illnesses who were supported by hospices in the West Midlands during the pandemic. It is one of four cohort reports – the others focus on carers, frontline hospice staff, and senior managers respectively – that form the evidence base for a Policy Report into the impact of Covid-19 on hospices. In these reports we address the nine key themes that were identified as potentially important in our previous collaborative knowledge synthesis (MacArtney et al., 2021) and seek to address some of the policy gaps we identified in our review of recommendations for hospice practice and policy (Langen-Datta et al., 2022). Together these outputs are the result of an Economic and Social Research Council funded study (grant number: ES/W001837/1) that is one of the first studies to contribute an in-depth exploration of hospice-based experiences of the pandemic to the growing body of knowledge about the effectiveness and effects of changes to hospice services, at regional and national levels in response to Covid-19. The aim of this report is therefore to explore experiences of those with life-limiting conditions the effects of the Covid-19 pandemic on the care and support to identify recommendations for clinical practice and healthcare policy. Drawing on these findings, this report offers recommendations for hospices and clinicians who continue to provide care and support for people with life limiting conditions during the ongoing pandemic. These recommendations will also be of interest to local commissioners who will need to work with hospices in their region to ensure people with life-limiting conditions receive the support they need, and national policymakers who will need to ensure the necessary resources and guidance are available.

This report describes the diversity of experiences of people with life-limiting illnesses who were supported by hospices in the West Midlands during the pandemic. It is one of four cohort reports – the others focus on patients, carers, and frontline hospice staff respectively – that form the evidence base for a Policy Report into the impact of Covid-19 on hospices. In these reports we address the nine key themes that were identified as potentially important in our previous collaborative knowledge synthesis (MacArtney et al., 2021) and seek to address some of the policy gaps we identified in our review of recommendations for hospice practice and policy (van Langen-Datta et al., 2022). Together these outputs are the result of an Economic and Social Research Council funded study (grant number: ES/W001837/1) that is one of the first studies to contribute an in-depth exploration of hospice-based experiences of the pandemic to the growing body of knowledge about the effectiveness and effects of changes to hospice services, at regional and national levels, in response to Covid-19. As the key decision makers during the Covid-19 pandemic, this part of the ICoH study aimed to explore senior managers’ experiences and to understand how they responded to the challenges imposed on them whilst still delivering a high-quality palliative care service. Coupled with hospice grey evidence in the form of, for example, senior management emails to staff, policy and guideline documents, we can start to understand the pressures and context in which decisions were made, including what worked well and what did not. The aim of this report is therefore to explore experiences of senior managers during the Covid-19 pandemic to identify recommendations for clinical practice and healthcare policy. Drawing on these findings, this report offers recommendations for hospices managers and clinicians who continue to provide care and support for people with life limiting conditions during the ongoing pandemic. These recommendations will also be of interest to local commissioners who will need to work with hospices in their region to ensure people with life-limiting conditions receive the support they need, and national policymakers who will need to ensure the necessary resources and guidance are available.

This report describes the diversity of experiences informal carers for people with life-limiting illnesses who were supported by hospices in the West Midlands during the pandemic. It is one of four cohort reports – the others focus on patients, frontline hospice staff, and senior managers respectively – that form the evidence base for a Policy Report into the impact of Covid-19 on hospices. In these reports we address the nine key themes that were identified as potentially important in our previous collaborative knowledge synthesis (MacArtney et al., 2021) and seek to address some of the policy gaps we identified in our review of recommendations for hospice practice and policy (Langen-Datta et al., 2022). Together these outputs are the result of an Economic and Social Research Council funded study (grant number: ES/W001837/1). This is one of the first studies to contribute an in-depth exploration of hospice-based experiences of the pandemic to the growing body of knowledge about the effectiveness and effects of changes to hospice services, at regional and national levels in response to Covid-19. The aim of this report is therefore to explore experiences of those informal carers of people with life-limiting conditions and the effects of the Covid-19 pandemic on the care and support they experienced, to identify recommendations for clinical practice and healthcare policy. Drawing on these findings, this report offers recommendations for hospices and clinicians who continue to provide care and support for people with life limiting conditions and those that care them during the ongoing pandemic. These recommendations will also be of interest to local commissioners who will need to work with hospices in their region to ensure informal carers receive the support they need, and national policymakers who will need to ensure the necessary resources and guidance are available.

This report describes the diversity of experiences of hospice staff who worked in operational roles in hospices in the West Midlands during the Covid-19 pandemic. It is one of four cohort reports – the others focus on patients, carers, and senior managers respectively – that form the evidence base for a Policy Report into the impact of Covid-19 on hospices. In these reports we address the nine key themes that were identified as potentially important in our previous collaborative knowledge synthesis (MacArtney et al., 2021) and seek to address some of the policy gaps we identified in our review of recommendations for hospice practice and policy (van Langen-Datta et al., 2022). Together these outputs are the result of an Economic and Social Research Council funded study (grant number: ES/W001837/1). This is one of the first studies to contribute an in-depth exploration of hospice-based experiences of the pandemic to the growing body of knowledge about the effectiveness and effects of changes to hospice services, at regional and national levels in response to Covid-19. The aim of this report is therefore to explore the effects the Covid-19 pandemic had on the experiences of hospice staff as they sought to provide care and support to people with life-limiting conditions and those that cared for them so that we can identify recommendations for clinical practice and healthcare policy. Drawing on these findings, this report offers recommendations for hospices and clinicians who continue to provide care and support for people with life limiting conditions and those that care them during the ongoing pandemic. These recommendations will also be of interest to local commissioners who will need to work with hospices in their region to ensure informal carers receive the support they need, and national policymakers who will need to ensure the necessary resources and guidance are available.

Background: The Covid-19 pandemic resulted in the development of numerous recommendations for practice and policy for specialist palliative care provided by hospices in United Kingdom (UK), as hospices were significantly affected by the pandemic and protections put in place. The aim of this review is to identify and synthesise recommendations or implications for policy and practice that have been generated for adult hospice specialist palliative care during the first 24 months of the Covid-19 pandemic. Methods: AMED, BNI, CINAHL, EMBASE, EMCARE, HMIC, Medline, PsycINFO, PubMed databases were searched for peer-reviewed papers, as well as hand searches for grey literature. Literature relating to hospices and Covid-19 in the UK were included and a thematic synthesis of recommendations for hospice policy and practice was undertaken. Results: 858 articles were identified with 12 meeting the inclusion criteria. Fifty-eight recommendations or implications were identified: 31 for policy, 27 for practice, and 10 covering both. Recommendations were organised under ten themes. There were several recommendations seeking to secure hospice resources to mitigate the short-term impact of the pandemic, as well as those focused on longer-term implications such as core funding. The impact of the pandemic on the quality of hospice care was the focus for numerous recommendations around improving integration of hospice care in the community, provision of bereavement support and better use of Advance Care Plans (ACP). However, there were significant gaps related to carer visitation in hospices, inequities of palliative care, or hospice-at-home services. Conclusion: The Covid-19 pandemic and protections exposed several ongoing policy and practice needs, especially around hospice resources, while generating novel issues for hospices to address. Significant policy gaps remain to be addressed to mitigate the impact of the pandemic on the quality of hospice specialist palliative care.

Background: The Covid-19 pandemic resulted in the development of numerous recommendations for practice and policy for specialist palliative care provided by hospices in United Kingdom (UK), as hospices were significantly affected by the pandemic and protections put in place. The aim of this review is to identify and synthesise recommendations or implications for policy and practice that have been generated for adult hospice specialist palliative care during the first 24 months of the Covid-19 pandemic. Methods: AMED, BNI, CINAHL, EMBASE, EMCARE, HMIC, Medline, PsycINFO, PubMed databases were searched for peer-reviewed papers, as well as hand searchers for grey literature. Literature relating to hospices and Covid-19 in the UK were included and a thematic synthesis of recommendations for hospice policy and practice was undertaken. Results: 858 articles were identified with 12 meeting the inclusion criteria. Fifty-eight recommendations or implications were identified: 31 for policy, 27 for practice, and 10 covering both. Recommendations were organised under ten themes. There were several recommendations seeking to secure hospice resources to mitigate the short-term impact of the pandemic, as well as those focused on longer-term implications such as core funding. The impact of the pandemic on the quality of hospice care was the focus for numerous recommendations around improving integration of hospice care in the community, provision of bereavement support and better use of Advance Care Plans (ACP). However, there were significant gaps related to carer visitation in hospices, inequities of palliative care, or hospice-at-home services. Conclusion: The Covid-19 pandemic and protections exposed several ongoing policy and practice needs, especially around hospice resources, while generating novel issues for hospices to address. Significant policy gaps remain to be addressed to mitigate the impact of the pandemic on the quality of hospice specialist palliative care.

Background COVID-19 represents a mass bereavement event, with 80,000+ excess UK deaths. The unprecedented clinical and social restrictions are potential risk factors for poor bereavement outcomes. This study investigates the bereavement experiences, support needs and support use of people bereaved during the pandemic.Methods Interim findings from the first round of a mixed methods longitudinal survey of people bereaved in the UK since 16March 2020. The survey was disseminated via media, social media, national associations and community/charitable organisations. Grief was assessed using the Adult Attitude to Grief Scale.Results 532 bereaved people participated (91% female). Place of death: hospital (55%), home (22%), care home (15%), hospice (5%); 46% of deaths were confirmed/suspected COVID-19. Experiences of end of life care varied: 23% were ‘never’ involved in decisions about their loved one’s care, 36% felt ‘not at all’ supported by healthcare professionals after the death, 51% were not provided with information about bereavement support. Respondents reported high levels of problems specific to the pandemic bereavement context (e.g. 56% unable to visit prior to death, 67% social isolation and loneliness). Over half of participants demonstrated ‘severe’ (28%) or ‘high’ (24%) levels of vulnerability in grief, and support needs were high/fairly high in six psycho-emotional domains (51% to 62%). COVID-19 deaths were associated with higher levels of bereavement problems (p

Introduction General Practitioners (GPs) face challenges when providing palliative care, including an ageing, multimorbid population, falling GP numbers and increasing demand. A ‘public health palliative care’ (PHPC) approach is gaining momentum, and is defined as ‘working with communities to improve people’s experience of death, dying and Bereavement’. ‘Compassionate communities’ is one example, supporting patients by linking professional health carers and community networks. Primary care is central to the approach, which has been incorporated into General Practice Daffodil Standards, however there is little evidence of GP perspectives of these approaches. Our aim, therefore, was to explore GP perceptions of PHPC and ‘compassionate communities’. Methods Using snowball sampling, GPs were recruited through university teaching and research networks. Additionally, purposive sampling ensured wide representation of gender, level of experience and practice populations. Following informed consent, semi-structured, digitally audio-recorded interviews were conducted. Interviews were transcribed verbatim, and thematic analysis was undertaken. Interviews continued until data saturation was reached. Results Nine GPs were interviewed. Most were unfamiliar with ‘compassionate communities’, but recognised examples within their practice. Three themes identified perceived benefits of the model: ‘increasing awareness of community services’; ‘combatting taboo’; and ‘embracing health outside of healthcare’. Three themes identified perceived barriers: ‘limited time and funding’; ‘patient safety concerns’; and ‘integration with current care’. Some GPs perceived the PHPC approach as a distinct social issue outside of ‘proper’ palliative care and General Practice. Others envisaged a GP ‘signposter’ role, supporting a community-led system. Conclusion GPs recognised the importance of the wider community in caring for palliative care patients, but had differing views regarding the application of ‘compassionate communities’ and their position within this. Understanding more about the model’s practical implementation and exploring potential service-users’ views would help establish the feasibility of ‘compassionate communities’ in practice.