Written evidence submitted by the Royal College of General Practitioners (DEL0327)

 

The COVID-19 pandemic has provided significant new challenges in community palliative and End of Life care for people and their families, general practice, community nursing teams and hospice and specialist palliative care teams, which have resulted in major changes in practice. Despite the key role of general practice and community services in palliative care, there is very limited evidence-base from previous pandemics to support the changes in practice.

 

Prior to the COVID-19 pandemic, there was a longstanding need for more time resource, continuity of care and capacity in general practice to provide effective palliative and End of Life care. There was a need for more consistent access to hospice and specialist palliative care services, and for training and education to enable more advance care planning and effective symptom control for dying people. These remain pressing concerns as the need for high quality, effective palliative and End of Life care in the community grows through the pandemic and beyond.

 

In response to the COVID-19 pandemic, the RCGP set up an End of Life care expert reference group to address an urgent need to proactively consider evidence-based crisis care support at end of life and facilitate horizon scanning and planning within primary and community care. The group consisted of representatives from relevant medical specialities, nursing and voluntary sector organisations and, at the time of this submission, had met weekly for 6 weeks. The key components of these conversations have been collated below for submission to the inquiry ‘Delivering Core NHS and Care Services during the Pandemic and Beyond’.

 

These discussion points were informed by knowledge of and recognition of the value of harnessing communities and trusting their capacity to provide bereavement support. In addition, this work incorporated trauma-informed approaches to sudden bereavement and best practice bereavement support following End of Life care, and built on the government’s commitment to mental health through bereavement support following certain types of sudden death (e.g. in the case of suicide, homicide, road death).

 

The summary headings are:

 

  1.     Public Health Palliative Care: developing a community response to Covid-19 pandemic

2.       COVID-19 bereavement crisis

  1.     Psychosocial services will need to support the community response 

4.       Care Homes and domiciliary care providers

  1.     Investment in Future Education & Training: The Creation of Public Health end of life Care Units – Actively mobilising evidence-based learning into clinical practice

 

1.       Public Health Palliative Care: developing a community response to Covid-19 pandemic

 

1.1               The public health palliative care response to the Covid-19 pandemic has two immediate concerns. The first is how communities can support those undergoing experiences of care giving during end of life, dying, death and loss both from Covid-19 and non Covid-19 causes. The second is supporting people suffering from the psychological and emotional consequences of the pandemic, including anticipatory grief and bereavement.

 

1.2               Existing community resource is significant, based on the work of Community Resilience Teams, Link Workers, compassionate communities, and social prescribers. There are 4,000 groups registered with Mutual Aid Covid-19 which have formed spontaneously from the ground up, during the pandemic. This resource, in combination with the 1 million NHS Volunteers, offers the possibility of developing a systematic, population-based community response across the UK.

 

1.3               Key to the success of a public health palliative care response is the linkage of these communities with the over 9,000 UK general practices, palliative care teams and community and social services. Existing models have been shown to work well, such as the Frome Model applied systematically across Frome and the Mendip area of Somerset[i]. Collaboration and functional links between communities and health and social care services enormously expands the capacities and resilience of both communities and professional services and allows for the transformative effects of social relationships[ii].

 

1.4               Peer support, anticipatory grief and bereavement communities, based around GP practices, can be the basis for developing effective networks which can help address the psychological consequences of the Covid-19 pandemic and the lockdown. This mirrors the three-tiered support model of Cruse bereavement which combines personal networks and community, trained volunteer support and professional bereavement support (Figure 1).

 

1.5               Community responses to supporting people during the pandemic can be divided into 3 components:

 

What communities are best placed to do:

 

What communities and professionals are best placed to do together:

 

What professionals best do:

 

1.6               In 2019, the RCGP and Marie Curie partnership launched The Daffodil Standards – UK General Practice Core Standards for Advanced Serious Illness and end of life Care. The Standards are relevant to all UK practices, offering a structure to enable practices, whatever the starting level, to be proactive organisations in which continuous learning and quality improvement steps are an integral part of caring for people. The Daffodil Standards underpinned, the quality improvement GP contract 2019/20, however this contract module only focussed on End of Life care for a one-year period. Yet End of Life care is perhaps the most complex and sensitive care to get right across a population. We advise reinstating and prioritising End of Life care quality improvement models (such as the Daffodil Standards and QI GP contract End of Life care module), capacity and investment into primary care and communities in order to support ‘time to care’ and delivery of high-quality end of life medical and ‘de-medicalised’ care and support. This is particularly important to build the links and pathways between primary care teams and community resources.

 

1.7               Developing community resources is important to be able to cope with the existing demands of the COVID-19 pandemic. However, having compassionate streets and neighbourhoods can continue into the future and developing a lasting partnership between communities and health and social care services can benefit everyone in the long term.

 

1.8               An important step when developing compassionate street/ neighbourhood teams would be to identify those people who might have something to give friendship, practical support, cooking, childcare etc, and collating this information. This information can be gathered through posting forms through letterboxes, giving examples of the kind of help that could be offered. This could lead to the development of a resource where the information of volunteers in each street/neighbourhood is available, through new and existing serviced directories such as Health Connections Mendip https://healthconnectionsmendip.org/mendip-directory/ and Dewis https://www.dewis.wales.

 

Through collaborative working between health and social care services and link workers, people`s needs could be identified in a systematic way and people could be connected and directed appropriately to local help and support.

 

 

 

Figure 1 Community Response Model to anticipatory grief and bereavement

 

2.       COVID-19 bereavement crisis

 

“In the evening dad was in his bedroom saying he felt 5 out of 10 in terms of sickness, and we were getting him glasses of water, and the next morning mum told me he was dead.” Teenage girl on the death of her father in April 2020, at home, from COVID-19, BBC

 

Below is a summary of the key issues relating to the likely impending COVID-19 bereavement crisis in the UK.

 

2.1 Recommendation: An early, community-led, and supported response

 

2.1.1         Help from day one through the early weeks is essential after a sudden bereavement and must protect the well-being (health and safety) of people. Help provided must be practical - identifying and meeting people’s needs, for example, medical aid, food, housing, funds; and emotional - helping people live through the psychological stress caused by the shock.

 

2.1.2         Psychological trauma-informed principles[iv] for delivery of help are: keeping people safe, restoring choice and control, supporting people’s ability to cope (including normalising reactions), facilitating connections to others, responding to how someone identifies them self (for example their circumstances, gender, faith) and building people’s resilience.

 

2.1.3         In the early days and weeks such care can be effectively provided by a combination of utilising the capacity and value of a community response, accessed through local intelligence, including:

 

Community-based peer support: compassionate people in families and friendship circles[v] and supportive community networks[vi] such as community members/neighbours. (Communities are responding to COVID-19; for example, with mutual aid groups.) This support can include compassionate conversations, doing the shopping, etc.

Community-based professionals providing support as a primary role (either public, private or NGO employed), either because they were already providing support to someone now bereaved or can be deployed, such as care/social workers, child/youth workers, bereavement nurses.

Community-based professionals providing support as a secondary role within their wider role, for example GPs, police, teachers, faith leaders.

Supporting and referring into the community response from existing third sector helplines / websites etc.

 

2.1.4         After the first few weeks, such care, if required, can be provided by signposting to longer term grief support, such as through bereavement groups/cafes etc, 1:1 or whole family support, online community forums / helplines, etc; and , if appropriate, mental health services for assessment of need and treatment. All participating professionals and services listed above should anticipate a surge in demand and likely increased complexity and be geared up / funded to accommodate this surge.

 

The above types of responses are summarised in Figure 2.

 

 

Figure 2 Initial responses to supporting bereaved people

 

3 Psychosocial services will need to support the community response 

 

National and local psychosocial services should be established to enable comprehensive access to the community response. Such services should be easily accessible and provide assessment and triage of cases.  Assessments would need to include the consideration of needs and risks in cases of heightened vulnerability, including unexpected or otherwise shocking bereavements, cases involving children, young people or older people, and cases involving people who may face inequality due to poverty, ethnic background, etc.

 

The above are consistent with the United Nations Inter-Agency Standing Committee`s briefing note[vii] calling for “health authorities to establish sustainable and community-based mental health and psychosocial services.”

 

Evidence-based approaches should underpin the development of such services, based on psychological trauma-informed principles and learning from the disaster response community, as well as principles around End of Life care and grieving. Psychosocial services should be able to:

 

1)      Provide online information for:

 

2)      Ensure proactive support e.g. case management of people with heightened vulnerability, that aims to signpost and connect these vulnerable people to relevant local services:

 

3)      Communicate learning to relevant stakeholders and community partners about what works and contribute to the development of service standards.

 

The Compassionate Cities Charter highlights the need for communities to recognise that all natural cycles of sickness and health, birth and death, and love and loss occur every day within the orbits of its institutions and regular activities. A compassionate city is a community that recognises that care for one another at times of crisis and loss is not simply a task solely for health and social services but is everyone’s responsibility[viii].  The Compassionate City Charter includes 13 steps that cities, towns or villages may take to publicly recognise those who are dying, caregiving or grieving and to make their locality a supportive and open place for these processes to take place in. It is important to support bereavement across these steps. This should include specific focused investment to support primary care, other bereavement health and charity services (Tier 2) and specialist mental health services (Tier 3). However, there’s also a need to enable care via responsive pathways within the community (Tier 1) to allow for normalising grief and bereavement, where appropriate –through naturally occurring supportive networks such as those found within for example, places of worship, workplaces, schools and education centres.

4         Care Homes and domiciliary care providers

 

The following points were made in relation to Care Homes and domiciliary care providers:

 

4.1               Care homes and domiciliary care teams are witnessing more deaths as a result of the COVID-19 pandemic.

 

4.2               The everyday work of care staff has been invisible and undervalued until now. However, the pandemic has highlighted the importance of the care provided to vulnerable groups of people who are frail or have complex ongoing care needs and have required shielding measures.

 

4.3               The resilience of care home and domiciliary sector staff is being severely tested by the number of deaths and resulting bereavement at a time when family members are not able to visit.

 

4.4               Staff may not be familiar with End of Life care and may feel they have limited knowledge or expertise – which can be over-whelming.

 

4.5               Disruption to PPE distribution to care homes and domiciliary care teams has added to staff anxiety about the health and wellbeing of the people they care for, themselves and their families.

 

4.6               Disruption to primary care and district nursing services may mean that there is less capacity to support care homes in the health needs assessment and in advance care planning and verification of death.

 

4.7               Staffing capacity through sickness and vacancies may have been severely disrupted and can add to the stress and anxiety felt by staff.

 

4.8               There is a need for the NHS and care sector to work together in supporting staff to deliver compassionate and high-quality care.

 

4.9               The NHS has a responsibility to support care sector workers with education, training, coaching opportunities, and de-briefing from the overwhelming sense of loss.

 

4.10           Society has a responsibility to recognise and value the work that GPs, community nurses and care home nurses and workers provide in the care home and domiciliary care sector.

 

4.11           The government are accountable for the ongoing sustainability of the sector and should recognise the importance of adequate funding. Lack of social care funding can increase the need for hospital admission and can delay hospital discharge. Capacity planning across the whole of health, social care and hospices is essential.

 

4.12           Compassionate conversations are essential in enabling people in care homes and domiciliary care to talk about what matters to them, what is important to them as people with past, present and futures, and what matters to them when approaching the end of their lives. It is essential to involve their important others. Investment in primary care in partnership with End of Life care voluntary sector partners and the care sector and communities is vital to enable care planning and ensure quality of life is maintained until the end of people’s lives.

 

4.13           It is important that anticipatory care planning conversations are documented and shared with the person, their family members, health and care staff involved in their care. Interoperability of electronic medical records across sectors is vital, in order to be able to support people’s wishes at the end of their life – in and out of hours.

 

4.14           Care homes must be able to support and signpost bereaved families, linking them into the community resources discussed earlier

 

4.15           The time is right for the role in supporting the most vulnerable in society to be acknowledged.

 

5. Investment in Future Education & Training: The Creation of Public Health end of life Care Units – actively mobilising evidence-based learning into clinical practice

 

The need

 

5.1              The COVID-19 pandemic has exposed a major gap at the intersection of public health and End of Life care & bereavement training and preparedness. This has led to the nation’s largest direct service providers (NHS) taking almost the full brunt of the ‘crisis’ management and response.

 

5.2               Management strategies have been developed only during rather than before the pandemic and with limited support or institutional wisdom from existing/prior expertise about prevention, harm reduction or early intervention ideas.

 

5.3               Public health academics had limited expertise in End of Life care, and End of Life care experts had little public health training. This has resulted in poor grief support in communities and coordination of expertise, highlighting future need for education, training and inter-specialty joint working, involving wider communities, for example, in crematoriums and funeral rituals.

 

Education and training gaps

 

5.4               Public health education and training has mainly focused on the surveillance sciences (e.g. epidemiology, assessment, population modelling, bench and behavioural intervention sciences) and not the social sciences relevant to public health practice (e.g. community development, social ecology, health/resilience promotion, civic and digital practices, communication sciences, & disaster preparedness).

 

5.5               Traditional public health research has not focused adequately on End of Life care research such as palliative or bereavement care at a population health level, death studies, end of life literacy, or principles and practices of disaster management.

 

5.6               End of life education and training has focused almost entirely on acute care or crisis sciences/approaches (e.g. intensive care, ventilation technology, clinical palliative care, law enforcement) and not prevention sciences existing more broadly in palliative care practice (e.g. advanced care planning, primary care partnerships, civic-digital-healthcare partnerships, communication building, and community assets and support development).

 

The research and education shift needed

 

5.7               The lack of preparedness at the intersections of public health and End of Life care has exposed a longstanding under-investment in education, training, and research in these two areas.

 

5.8.             There are relevant international associations, conference series, and international journals, and a national charity with British clinicians and academics well represented in all of them. However, there is limited representation at senior academic level and within medical schools. For example, there is currently no public health End of Life care professor in a medical school in the UK.

 

5.9.             Within research and training, there is a need to combine epidemiology and biomedical sciences with partnership working, primary care, community and civic practice development, and prevention sciences for End of Life care. In this context, End of Life care means not solely developing best practices in palliative care provision, bereavement and intensive care services but also their essential linkages and implementation within public health, primary care, the voluntary sector, disaster management, and local government systems.

 

Public Health end of life Studies Units

 

5.10           The establishment of a Public Health end of life Studies (PHELS) Unit initially in England, but then others located in Scotland, Northern Ireland and Wales, will pave the way for evidence-based and joined-up End of Life care provision. Academic posts in such units could be bridging the academic, clinical, public health/primary care and civic sectors and designed to create, test, and disseminate new public health palliative care practices for future population-wide crises (Figure 3).

 

5.11           PHELS Units should be led by a senior policy & practice-oriented academics with an established track record in public health and palliative care who can demonstrate longstanding experience with practice development, service redesign and partnership working with civic and primary care sectors. Appointees should be able to demonstrate systems-thinking skills and backgrounds.

 

Future benefits and outcomes

 

5.12           For existing public health research and teaching: Balancing and re-orienting surveillance sciences – epidemiology, health services research, bench sciences, data and computer modelling work - by linking their understanding of problem and threat to an additional expertise and research on practical solutions-development for civic society and care services redesign. Balancing print outputs of public health information with filmmaking and social media practices for rapid professional and civic consumption.

 

5.13           For Local authorities: Informing public health practices with public health palliative care, end of life literacy, and death studies research to create joint plans for future population crises such as pandemics and disaster planning. Creating pathways for local practice experiments and innovations to undergo research evaluation. The creation of new End of Life care training offerings for local authority workers in health and social care specifically in the area of community resilience and wellbeing during crises management.

 

5.14           For professional bodies such as the RCGP: Working with charities - such as Hospice UK, Cruse or Compassionate Communities UK and others - to identify, guide, and embed new social models of primary care that address patient increasing need without sacrificing quality. New models of service design, such as the community connectors/compassionate community model employed in Frome for example, can be adapted, diversified, and evaluated for wider implementation.

 

5.15           For health commissioners, as well as for the charitable and civic sectors: Rapid advice, education and training outputs that are more accessible, shareable, and easily dispersed. PHELS Units will place greater emphasis and use of film and social media production for rapid learning, briefing, and messaging of innovative practice information, health and end of life literacy, and partnership working. The audio-visual/social media emphasis will create training offerings for all health and social care students and frontline practitioners that are purpose-designed for continual updating and deployment in crises and other adverse circumstances. In their turn, Health commissioners and charities may commission short films and media work from PHELS Units for use in awareness-raising, public messaging, and civic education.

 

5.16           For local, regional and national government: PHELS Units will provide high level, evidenced-based input for national planning, preparedness and resilience, ensuring a joined-up, systems-based approach to future crisis management.

 

 

A close up of a sign Description automatically generated

 

Figure 3 Summary route map

 

 


Experts include representatives from across different End of Life care organisations and professional bodies:

 

Dr Catherine Millington-Sanders, RCGP & Marie Curie National end of life Care Champion

Dr Victoria Tzortziou Brown OBE, RCGP Honorary Secretary

Dr Adrian Tookman, Marie Curie, acting medical director

Dawne Garrett RGN, Royal College of Nursing care homes lead

Carolyn Doyle RGN, Royal College of Nursing End of Life care lead

Professor Allan Kellehear, Emeritus Professor, University of Bradford

Dr Julian Abel, Compassionate Communities UK director

Julie Pearce, Marie Curie Chief Nurse, Executive Director of Quality & Caring Services

Professor Max Watson, Director Project ECHO Hospice UK and Consultant Palliative Medicine Western Trust

Professor Bill Noble, Honorary Professor of Community Palliative Medicine, Sheffield Hallam University

Dr Iain Lawrie, President, Association for Palliative Medicine of Great Britain and Ireland

Steven Wibberley, Cruse Bereavement, Chief Executive

Mary Williams OBE, Brake and Sudden, Chief Executive

Lesley Carter RGN, Age UK, Clinical Lead in Health Influencing

Professor Tim Coates, Accident and Emergency Consultant, Leicester

Dr Sarah Onions, Macmillan GP Facilitator & Palliative Care Doctor

Dr Clifford Jones, RCGP Wales end of life Care clinical lead, Primary Care Clinical Director, Aneurin Bevan University Healthboard

Dr Patricia Moultrie, Deputy Chair, Scottish General Practitioners Committee, BMA and Medical Director, Glasgow Local Medical Committee

Dr Alison Tavare, Primary Care Clinical Lead, West of England Academic Health Science Network

Dr Anthony Cunliffe, Joint National Lead Macmillan GP Adviser

Dr Rachael Marchant, RCGP & Marie Curie End of Life care Clinical Support Fellow

Dr Tarana Hafiz, RCGP & Marie Curie End of Life care Clinical Support Fellow

Professor Alf Collins, Clinical director for personalised care NHSEI

Dr Simon Tavabie, Dr Simon Tavabie, Marie Curie Specialist Registrar

Dr Grainne Doran, RCGP NI end of life Care clinical lead

Dr Sarah Mitchell, Yorkshire Cancer Research Senior Research Fellow, University of Sheffield; Clinical Director for end of life Care, Sheffield CCG 

Lesley Carter RGN, Clinical Lead in Health Influencing Age UK

 

 

References

 

 

 

[i] 

  1. Abel J, Kingston H, Scally AJ, Hartnoll J, Hannam G, Thomson-Moore A, et al. Reducing emergency hospital admissions: A population health complex intervention of an enhanced model of primary care and compassionate communities. 2018.
  1. [ii] Holt-Lunstad J, Smith TB, Layton JB. Social relationships and mortality risk: a meta-analytic review. PLoS medicine. 2010;7(7):e1000316.
  1. [iii] Deaths are normally around 1,400 a day. Largest causes are expected (such as dementia.) Unexpected deaths make up around 1 in 9 normally (further analysis pending), and include heart attacks, respiratory, suicides, poisoning, road deaths and homicide. (ONS) 
  1. [iv] Goodman L, Sullivan C, Serrata J, Wilson J, Fauci J and DiGiovanni C (2016): Development and Validation of ­ Trauma Informed Practice Scales, Journal of Community Psychology, 44, 6, 747-764
  1. [v] Trickey, D. et al. (2012). Meta-analysis of risk factors for PTSD in trauma exposed children. Clinical Psychology Review, 32, 122-138.
  1. [vi] https://www.compassionate-communitiesuk.co.uk/COVID19-response
  1. [vii] Addressing mental health and psychosocial aspects of COVID-19 outbreak, United Nations
  1. [viii] https://www.compassionate-communitiesuk.co.uk/covid19-response

A. Kellehear (2016)    The Compassionate City Charter: Inviting the cultural and social sectors into end-of-life care. In K. Wegleitner, K. Heimerl & Allan Kellehear (ends) Compassionate Communities: Case studies from Britain and Europe. Abingdon: Routledge, pp 76-87.