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.


Health and Social Care for Older People Statement of Intent

The Scottish Government has published Health and Social Care for Older People Statement of Intent, which sets out the Scottish Government’s intention to make a significant difference to how it approaches older people’s health and social care in Scotland. It includes a section on 'dignity and respect at end of life':

"As people become older there is a growing awareness of mortality, yet this can be a difficult subject to talk about. We need to discuss issues around death and dying in an open and honest way, and support and encourage opportunities for these conversations. When people require end of life care, they must have access to high quality care, focussing on the physical, social, psychological and spiritual dimensions of care. This care must be provided in a way that minimises harms whilst retaining dignity and humanity. We must also acknowledge and continue to support families through their bereavement, recognising that people grieve in different ways."

Chief Medical Officer Annual Report

The Chief Medical Officer has published his annual report for 2020 – 2021: Recover, Restore, Renew.

Political party manifestos

The Scottish political parties have published their manifestos ahead of the upcoming Scottish Parliament election. Some of the main extracts relating to palliative care and bereavement are presented below:

Scottish Conservative and Unionist Party Manifesto: Rebuild Scotland

"We would develop a new national plan for palliative care to ensure everyone can access the support they need whether they die in hospital, a hospice, a care home or at home. In addition, we would maintain funding for children’s hospices and support the Bereavement Charter for Scotland to ensure all bereaved families can access the practical and emotional support they need."

Scottish Greens Manifesto 2021: Our Common Future

"Palliative Care

We will work to ensure dignity in death, with those in need of palliative care and their carers properly supported throughout the process.

We will:

• Introduce safe and compassionate laws that allow terminally ill adults the right to an assisted death when the time is right for them.

• Develop a national plan for palliative care, including specific measures to ensure the needs of children are met and children’s hospice care is supported.

• Introduce mandatory palliative care training for frontline health and care professionals."

Scottish Labour's National Recovery Plan

"We will seek to improve the funding and integration of hospice services, including work in the community, strengthening bereavement support and maintaining funding for specialist hospice and community care for children.

We support increased access to good quality bereavement support to help people process their grief. A human rights-based Carers (Bereavement Support) (Scotland) Bill should be introduced to give carers a right to information on support and a plan to support them when their caring role ends, with a fund to support training and education, and access to Scottish Labour’s new jobs and training schemes. The Carer’s Allowance and Carer’s Allowance Supplement should be extended from the current eight weeks to six months after their role ends with a new Post-Caring Support Payment."

Scottish Liberal Democrats Manifesto 2021: Put Recovery First

“We will take palliative care more seriously, reinvigorating the clinical network and adopting a new five-year plan which accelerates the missed objectives of the previous plan.”

“We will also extend the support and financial assistance available to carers following a bereavement that means their caring role comes to an end, recognising the need to both grieve and adjust. We will provide information and support to carers following the end of their caring role. This will include a new fund to support training and education for carers returning to work after caring. We will extend eligibility for financial support for up to six months after a person’s caring role comes to an end.”

SNP 2021 Manifesto: Scotland's Future, Scotland's Choice

"Palliative Care

Everyone who can benefit from palliative care should have timely access to high quality, seamless care when and where they need it.

We will appoint a new National Clinical Lead for Palliative and End of Life Care for Scotland, who will be responsible for overseeing a national strategy for palliative and end of life care that takes a whole system, public health approach.

We are committed to ensuring children with palliative care needs receive the highest quality care, equally across Scotland, underpinned by annual public funding of at least £7 million to ensure children’s hospice care is sustainably resourced."

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New ACP resources from Healthcare Improvement Scotland

HIS has published new and updated resources relating to anticipatory care planning. This includes a toolkit bringing together resources relating to the four key steps: Preparation and planning; Meaningful conversations; Documentation and sharing; Regular review. The website also provides information on ACP in the context of COVID-19 including the Essential ACP and guidance to support review of the increased number of Key Information Summaries (KIS) that have been developed since the outset of the pandemic.

ReSPECT user interface

This short blog series provides an update on the latest changes in the User Interface of the latest version of digital ReSPECT.

Sharing current Scottish Practice

The SPPC Autumn Season 2020 featured an online poster exhibition of 64 posters, sharing work and research underway across Scotland. Each month, our blog focuses on the content of a few of these posters. This month, we focus on:

Sharing your practice

The SPPC hosts a blog as a platform for people to share examples of current Scottish palliative care practice that might be of interest to the palliative care community more widely. If you know of work underway that might be relevant for sharing on our website, please email:

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Academic and Research

Blog Series: Dramatic increase in deaths at home during the pandemic

The Scottish Centre for Administrative Data and Research is publishing a new series of blogs exploring data around the increase in deaths at home during the pandemic.

A silent epidemic of grief: a survey of bereavement care provision in the UK and Ireland during the COVID-19 pandemic.

Pearce C, Honey JR, Lovick R, et al. BMJ Open 2021;11:e046872. doi: 10.1136/bmjopen-2020-046872

This study investigated the experiences and views of practitioners in the UK and Ireland concerning changes in bereavement care during the COVID-19 pandemic.

Bereavement During the COVID-19 Pandemic: National Survey of Bereavement Support Services

Researchers at the University of Bristol and Cardiff University are conducting a national survey to find out more about how providers have been affected, and how services have responded to the challenges of the pandemic. The survey is open until 30 April 2021.

Report exploring DNACPR decisions before and during the Coronavirus pandemic

Compassion in Dying have published Better understanding, better outcomes: what we’ve learned about DNACPR decisions before and during the Coronavirus pandemic. The report looks at people’s experiences of DNACPR decisions during the pandemic and in the years leading up to it.

The impact of and response to the COVID-19 pandemic on a hospital palliative care team

Polly M Edmonds, Katherine E Sleeman, Natasha Lovell, Rosemary Chester, Richard P Towers, Stephen A Marshall, Irene J Higginson, Sabrina Bajwah and Wendy Prentice.

This case report describes how one hospital palliative care service responded to the COVID-19 pandemic.

A qualitative study of bereaved relatives’ end of life experiences during the COVID-19 pandemic

Hanna JR, Rapa E, Dalton LJ, et al. Palliative Medicine. March 2021. doi:10.1177/02692163211004210

This study aimed to explore relatives’ experiences and needs when a family member was dying during the COVID-19 pandemic.

‘Necessity is the mother of invention’: Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multinational survey (CovPall)

Dunleavy L, Preston N, Bajwah S, et al. Palliative Medicine. March 2021. doi:10.1177/02692163211000660

This study aimed to map and understand specialist palliative care services innovations and practice changes in response to COVID-19.

Public Health Research in Palliative Care - abstracts published.

The Abstract Book from the Public Health Research in Palliative Care: Towards Solutions for Global Challenges International Seminar held in November 2020 has now been published.

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Demystifying Death Week: Ideas & Resources

Taking place from 10-16 May, Demystifying Death Week. is about shining a light on death, dying and bereavement in Scotland.

A new resource pack has been launched to support people to hold digital events during the week.

It includes outline event programmes, films and resources on four themes: What happens when someone is dying?; Planning ahead; Death in times of covid-19; Caring for the carer.

Also included in the pack is a guide to hosting digital events, with tips on how to plan, host and facilitate a digital event.

GLGDGG is also offering members in Scotland free use of a Zoom Pro account to hold an event during Demystifying Death Week, including: video conferencing, password protected entry and breakout rooms.

All these resources are is designed to support small group discussions over zoom, with input and facilitation from local experts.

Please get in touch if you'd like more information about organising an event as part of Demystifying Death Week, and check out the Digital Event Resource Pack here.

Death and Dying: How much information can people stand?

This blog by Rebecca Patterson, Director of Good Life, Good Death, Good Grief explores the importance of providing honest, accessible and comprehensive public-facing information about serious illness and dying.

SPPC workplan

The SPPC has published its workplan for 2021-2022.

Changes to SPPC Council

We're pleased to welcome Jacqui Macrae, Chief Nurse at City of Edinburgh IJB as a new member of the SPPC Council. We'd also like to thank Beth Hamilton, who recently retired from Council for her work to support the SPPC.

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Other News

Palliative Discovery platform for CNS's working in palliative care

CNS’s from the NHS and voluntary sector are invited to to share thoughts and experiences to develop the Palliative Discovery platform. This online platform aims to be a space accessible to all CNS’s working in palliative care, where people can access support with professional development, career aspirations and to inform the next generation of advanced level nurses.

To make sure Palliative Discovery meets nurses' needs, CNS’s are invited to be involved in designing the platform to ensure it reflects the current context. This will involve a series of discussions over 2021 to shape Palliative Discovery by sharing perspectives with designers, testing prototypes of the platform and connecting with each other as nurses with palliative expertise. This will include discussing online training sessions, access to support, toolkits and other resources, as well as other community activities.

If you are interested in getting involved, or have any questions, email Lily Skelton:

Economic evaluation of CHAS

CHAS has published an economic evaluation by the York Health Economics Consortium (YHEC) of the services it provides, that indicates that for every £1 of statutory funding they generate £5.12 of public value in return.

Invisible Suitcase – Child Bereavement UK

Child Bereavement UK has released a new, animated short film to help bereaved children and families understand their grief and how to manage it.

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Demystifying Death Week Events

Taking place across Scotland from 10-16 May, Demystifying Death Week is about shining a light on death, dying and bereavement in Scotland. A full list of events is available here: weblink. If you'd like to organise an event, check out the Digital Event Resource Pack here.

Child Bereavement UK - Demystifying Death Week Webinars

Child Bereavement UK is putting on a week's programme of free training relevant for professionals working with children and young people in Scotland. This will cover

Creativity in Care - Demystifying Death week programme

Creativity in Care is organising a week of events to mark Demystifying Death Week, including:

Twitter forum: Life, death and grief in dementia, 8pm, Monday 10 May. #AlzChat

The Art of Caring for Self and Others, 11am - 12.40pm, Tuesday 11 May.

The Art of Caring for Self and Others, 7pm-8:40pm, Thursday 13th May.

What happens when someone is dying?, 11am-12:15pm, Friday 14 May.

Organised by Creativity in Care.

Top tips on planning for death from the Scottish Independent Celebrants' Association

During Demystifying Death week, a selection of funeral celebrants from Scottish Independent Celebrants' Association (SICA) will be sharing their totop tips and ideas on different aspects of planning for death and your funeral.

The Compassionate Friends UK - Say their name

Tuesday 11 May, 7pm - 8.30pm, Organised by Compassionate Friends UK

"If you mention my child's name I may cry. But if you don't mention it, you will break my heart." ~ Author unknown

A chance to learn more about the Compassionate Friends in a supportive and safe environment. All welcome. More information is available here: Say their name

Bereavement Charter webinar: Unexpected Consequences

Tuesday 11th May, 1.30pm - 3.15pm. Organised by the Bereavement Charter group.

The first in a series of webinars exploring different aspects of the bereavement charter, featuring:

  • Update on the Bereavement Charter, Dr Janice Turner, NHS Education for Scotland
  • People dying at home during Covid, Dr Jan Savinc, Napier University
  • How disenfranchised grief has been affected by Covid-19, Paul Parsons, Adult Bereavement Coordinator for St Christopher’s Hospice.
  • Digital Accessability and the impact on grief, Donna Hastings, Child & Families Worker, St Columba’s Hospice, Edinburgh.

More information is available here: ‘Unexpected Consequences’ – a virtual webinar on bereavement.

Planning Ahead

Tuesday 11 May, 3pm-4pm. Organised by Marie Curie for Marie Curie Volunteers.

The aim of this event is to facilitate open discussion surrounding planning ahead and equip volunteers with new tools that they can use in their personal lives and also in their patient facing volunteering role. For more information please contact Katie Warlaw:

Online Conversation Cafe

Organised by Say Something Dundee. Tuesday 11 May, 4pm.

Anyone from the Dundee area is invited along to join in with relaxed, informal discussion around local experiences of death, dying, loss and care. More information is available here: Say Something Dundee: Online Conversation Cafe

Death Cafe

Thursday 13 May, 7pm, online. Organised by No-one Dies Alone Ayrshire.

Join people from No-one Dies Alone Ayrshire for an evening of deep listening and discussion on death and dying. "Grab a cuppa and some cake and lets converse." More information is available here: Death Cafe

Truacanta Death Club

Organised by the Truacanta Project. Thursday 13th May, 7pm - 8.30pm.

Every few weeks the Truacanta Death Club will get together online, with a cup of tea and a biscuit and our reflections on something we've read, watched or listened to. Whether that's a book, a TV programme, an article or a podcast, there will be a connection to themes of death, dying, loss and care. It's free to join, the groups will be small and discussion informal.

More information is available here: Truacanta Death Club Tickets

Armchair chat with Kathryn Mannix

Tuesday 25 May, 7pm. Hosted by the Compassionate Community North Berwick Project Group

As a lead up to a creative and new North Berwick Fringe by the Sea in August 2021, the Compassionate Community North Berwick Project Group are hosting a series of online Armchair Chats. In May to mark Demystifying Death week, the group welcome Kathryn Mannix, a palliative care doctor, with a passion for public health and the author of the excellent book, ‘With the End in Mind.’ More information is available here: Armchair Chat with Kathryn Mannix

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Other Events

How we psychologically prepare and respond to major incidents with fatalities.

Dr Katie Davis, Principal Clinical Psychologist, NHS GG&C Psychological Trauma Service. A webinar organised by NHS Education for Scotland (NES). 4 May 2021, 12.30 - 1.30. Part of the NES monthly webinar series. More information is available here: weblink.

Practical Guide to Best Practice Symptom Control & Management in End of Life Care

Organised by Healthcare Conferences UK. 29 June 2021, online. More information is available here: weblink.

When grief goes viral

With Robert Neimeyer and Sherman Lee. A webinar organised by the University of Greenwich. 1 July. More information is available here: weblink.

Improving End of Life Care for people with Cardiovascular Disease & Heart Failure

Organised by Healthcare Conferences UK. 7 July 2021, online. More information is available here: weblink.

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