Scottish Partnership for Palliative Care: Update

Welcome to Update, a monthly round-up of news relevant to palliative care in Scotland, brought to you by the Scottish Partnership for Palliative Care. This is the fourth Covid-19 themed edition, in which we highlight key policy, guidance, resources and research sources.

There’ll likely be another edition soon. If you have content suggestions including things you want to share please contact SPPC. We’ll try to keep things brief and relevant. Key links in this and future editions will also put on the expanding COVID-19 sections of the SPPC website.

Policy and Guidance

Scotland’s route map through and out of the crisis

The Scottish Government has published Coronavirus (COVID-19): framework for decision making - Scotland's route map through and out of the crisis.

COVID-19 use of Clinical Frailty Scale: Letter from Principal Medical Officer

The Scottish Government has published a letter from the Principal Medical Officer, Dr Mitchell, to NHS Boards, which aims to ensure clarity in relation to the use of the Clinical Frailty Scale (CFS) and Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) with younger patients, those with a stable long term physical need, learning disability or autism.

End of Life Care in Frailty

The British Geriatrics Society have produced End of Life Care in Frailty, guidance aiming to prompt and support timely discussions about preferences for care, ideally at a time which facilitates the input of the older person themselves.

Facilitating compassionate care for patients dying with COVID-19

The Infection Prevention Society and British Association of Critical Care Nurses have released a position statement about safe and compassionate approaches to allowing family members to be with a dying person at the end of life under the current pandemic conditions.

COVID-19 position statement: CPAP for COVID-19-related respiratory failure

Healthcare Improvement Scotland and SIGN have published COVID-19 position statement: CPAP for COVID-19-related respiratory failure. The purpose of this document is to provide NHS Scotland with advice on the appropriate use of continuous positive airway pressure (CPAP) for people with COVID-19.

Scottish Intercollegiate Guidelines Network (SIGN) resources

SIGN have highlighted a number of resources as useful for NHSScotland.

British Psychological Society Resources

The British Psychological Society put together some useful tips, advice and links to articles that people might find helpful in dealing with the effects of the coronavirus pandemic.

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Public-Facing Resources

Hoping for the best, planning for the worst

SPPC has published information for people in Scotland who may be worried that they, or someone they care about, is at increased risk of getting seriously ill and potentially dying from COVID-19.

Online education for informal carers: an introduction to end of life issues

SPPC has created an online module which introduces people to end of life issues and explores what help and support a friend or family member could provide. The module does not look specifically at COVID-19, or dying from COVID-19. Rather, it introduces and explores dying in general – what to expect, and how to help. It comprises a collection of films and reflections designed for ordinary people who want to know more about dying, death and bereavement, including people who have no previous clinical or caring experience. It may also be helpful for health or social care staff without previous experience of palliative or end of life care whose role is changing in response to the COVID-19 situation.

Marie Curie end-of-life information service

Marie Curie are offering an information service about end of life care during coronavirus for family and friends of people approaching the end of life who might have questions about how they can be supported, including a free daytime phone line.

Alzheimer Scotland resources

Alzheimer Scotland has produced information resources for people with dementia, their carers and families throughout the coronavirus pandemic.

Death Registration

Tell Us Once enables people to report a death to most government organisations in one go. More information is available here: Tell Us Once, or by emailing tellusonce.communications@dwp.gov.uk

The National Records of Scotland also have further information on registration of deaths during the pandemic, including a guidance leaflet [pdf]

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Academic and Research

HIS COVID palliative care bulletin – 26th May

The Knowledge Management Team at Healthcare Improvement Scotland are producing palliative care literature alerts in relation to COVID-19. The most recent editions were published on 26th May and 2nd June. They are released every Monday. If you would like to sign up to the regular distribution list, please contact HIS on hcis.pallcareguidelines@nhs.net

Symptom burden and clinical profile of COVID-19 deaths: a rapid systematic review and evidence summary

BMJ supportive & palliative care. 2020;28:28. Keeley P, Buchanan D, Carolan C, Pivodic L, Tavabie S, Noble S.

A "good death" during the pandemic in the UK

This LSE report explores how communities are already adapting to processes of dying, burial, funerals and bereavement during the pandemic, and what consultation processes, policies and communications strategies could be mobilised to support communities through these specific phases.

The community perspective on potentially inappropriate treatment

This paper from the Annals of the American Thoracic Society explores the concept of 'futile treatment' and how it is understood by community members.

COVID-19 and the role of oxygen in palliative care at home

The Centre for Evidence-Based Medicine have published a blog by Dr Lyn Jenkins exploring evidence relating to the benefits of home-delivered oxygen for people with COVID-19.

Call for Abstracts: Public health research in palliative care

The seminar Public Health Research in Palliative Care: Towards Solutions for Global Challenges will take place online on 17 and 18 November 2020. The date for submission of abstracts has been extended to 24 July 2020 and another theme has been added in light of COVID-19.

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Other News & Resources

Centre for Death and Society COVID-19 information and resources

CDAS have collated together information and resources relating to the effects of Covid-19 on death and society.

Survey - Experiences of end-of-life care during the COVID-19 crisis

A partnership of organisations in Liverpool has developed an online questionnaire to enable people to share their experiences of end-of-life care provision during the COVID-19 pandemic, to help plan for and manage situations like this in the future. They would like to hear from those who have experienced the death of a relative or friend, and health and social care professionals who cared for a patient who died during the COVID-19 crisis. The person who died may or may not have been infected with COVID-19. You can take part in the survey here: Survey - Experiences of end-of-life care

Strathcarron Hospice Community Development response

This blog outlines the key elements of Strathcarron Hospice's community development response to COVID-19: The Strathcarron Hospice of adopting and ABCD approach in responding to covid-19

Survey on experiences of funerals

Fuze Ceremonies is conducting a national survey of people's experiences of funerals during COVID-19 to help them develop and deliver better ceremonies. You can complete the survey here: Fuze Ceremonies Survey.

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Health and wellbeing of health and social care staff

Psychosocial mental health and wellbeing support

NES have brought together some key resources to support the mental health and wellbeing of staff, including sections on managing stress, coping and resilience:

Headspace and Unmind

NHS staff have been given free access to a number of mental health and wellbeing apps until the end of December 2020, including Unmind and Headspace.

Supporting colleagues who have been bereaved

NHS Education Scotland has published two new resources to support health and social care staff who are bereaved. Employees who are bereaved provides guidance to help line managers have confidence to support employees who have experienced bereavement during the COVID-19 pandemic. Experiencing the death of a colleague is guidance to help staff and managers identify some initial steps that may help to ensure people have an opportunity to express their grief, to mark the death in a way that feels appropriate for them and to receive the support that they need.

Moral Injury: Dr Esther Murray

In this podcast, Dr Esther Murray, Health Psychologist working at Barts and the London School of Medicine and Dentistry. discusses moral injury and how it can impact ambulance crews, as well as what we can all do to help each other.

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SPPC News

Hoping for the best, planning for the worst

SPPC has published information for people in Scotland who may be worried that they, or someone they care about, is at increased risk of getting seriously ill and potentially dying from COVID-19.

The webpages aim to answer questions people might have about:

  • What to expect if someone is in an 'increased' or 'high' risk category.
  • Care and treatment available for people at home, hospital and in care homes.
  • How decisions are made about care and treatment.
  • Plans people can make if they’re worried about becoming seriously ill with COVID-19.
  • How a friend or family member can help someone who is very ill (and potentially dying) from COVID-19.
  • What happens after someone dies.

Thanks to the clinicians, members of public and others who provided advice and opinion on this content. The information can be accessed here: COVID-19 information - hoping for the best, planning for the worst

Networking for clinicians

SPPC continues to support online networking and information-sharing, organising regular meetings of the Scottish Acute Palliative Care Network (SNAPC) and additional meetings with other stakeholders including primary and social care staff. If you would like to be put on a mailing list to receive information about upcoming meetings, please get in touch with Caroline Sime: caroline.sime@palliativecarescotland.org.uk

Compassionate Communities Week

Good Life, Good Death, Good Grief ran Compassionate Communities Week from 27 April - 3 May 2020 as a way to acknowledge the compassion and innovation that so many communities are showing in response to COVID-19. We encouraged people to share their good ideas and practical actions, so that we could all learn from them. We funded a number of community groups to take practical action in their community to help those who are most vulnerable during the crisis. You can read about some of the community activities that took place on our Community Responses to COVID-19 page.

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Food for thought

Mourning collective loss

Ivor Williams, Alex Evans and Casper tel Kuile have written a paper on collective grief and mourning during covid-19. They argue that in conditions of such widespread loss as the ones we now face, it’s essential that we grieve well - and that this means doing so collectively, not just on our own.

Choices for the “New Normal”

This article by Donald M. Berwick in the Journal of the American Medical Association explores some of the longer-term changes that the COVID-19 pandemic could bring to the delivery of care.

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Courses and Events

RCPE and Royal Society for Medicine talks

The RCPE are running a weekly Evening Update series to inform and support healthcare professionals during the COVID-19 pandemic. The live streams are free, and the recordings are also available to watch on demand.

Royal Society for Medicine

The Royal Society for Medicine are offering free online seminars on a range of topics.

Public Health Research in Palliative Care: Towards Solutions for Global Challenges

This seminar will take place online on 17 and 18 November 2020, and be an opportunity to focus on the COVID-19 Pandemic. Registration fee:€55 More information is available here: weblink.

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