Seeking Volunteers: Working Group Updating the Palliative and End of Life Care Guidelines

The Scottish Intercollegiate Guidelines Network (SIGN) and the Scottish Palliative Care Guideline (SPCG) group are seeking additional volunteers to join the working group updating the palliative and end of life care guidelines. The group have identified 5 key areas of the guideline to update: Constipation, Delirium, Nausea and vomiting, Breathlessness and Substance Misuse. A sub-group of about 6 people will be formed to work on each key area.

Criteria for volunteering

• Be a health care professional (Pharmacist, Medical, Nursing and Allied health professionals)
• Have interest in and delivering palliative care services in the primary and acute care and specialist services.
• Provide input from patient and public perspective
• Attend all group meetings (online)
• Contribute to discussion and decision making in group meetings
• Work as required between meetings to ensure timely delivery of each stage of guideline development
• Provide Declarations of Interests in line with SIGN’s policy
• Work with the group to identify key issues, formulate clinical questions for review,
• Review evidence summaries, read relevant literature papers and draft recommendations
• Take responsibility for delivering the content of specific sections of the guideline
• Review the full guideline for accuracy and clinical relevance 
• Advise on responding to stakeholder comments on the draft guideline
• After publication, alert SIGN/SPCG to any new developments or published trials which could render the guideline recommendations out of date.

The work is likely to take around 6 months to complete. Within that time the guideline group will have around 2 full group meetings (online). There may be additional subgroup meetings in between. Volunteers will be working in a sub-group, chaired or co-chaired by members of the SPCG. Contributions to the group can be considered as part of continuing professional development and contribute to revalidation requirements as well as extending skill sets. Group members are acknowledged as co-authors of the final guideline.

The guideline group are supported by a team from the SIGN Executive who provide editorial, research and administrative support.

If you are interested, or would like to nominate a colleague, please contact Elonna Obak, SIGN Programme Manager, at elonna.obak@nhs.scot.

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Survey: Financial insecurity at end of life for people on work-related visas

A team of researchers based at the University of Stirling, alongside colleagues at University of Birmingham and the Trussell Trust, is undertaking a study looking at financial insecurity at end of life for people on work-related visas. This study is seeking to understand financial precarity including all the complexities of anxiety, legalities, cultural differences in confidence/ trust in authorities, language issues, isolation, and supports. 

Researchers are seeking to interview:

• People on UK work visas who have a serious (terminal) illness
• Professionals (volunteers or paid) who support people who are on work visas with serious illness.

Everyone taking part will receive a £25 gift voucher. 

Find out more at the study website.

Call for Contributions: CDAS Conference 2024: "Death and Communities"

The call for contributions for the Centre for Death & Society Conference 2024 is now open. The conference will take place on 6 and 7 June 2024 at the University of Bath and online. The theme of the conference will be Death and Communities. The deadline for submissions is noon 31 January 2024.

Full details can be found on the conference web page – submissions should be made using this online form.  

Research Invitation: Breathlessness Action Plans

An Australia-based research project is exploring the different breathlessness action plans being used by people with chronic obstructive pulmonary disease (COPD).  The research team is hoping to hear from health professionals from any discipline and specialty who recommend and/or complete breathlessness action plans with people with COPD as part of the support they provide.

Participation will involve completing a 15-minute online questionnaire or telephone/Zoom interview, according to your preference.  Results from the survey will inform the co-design of an optimal breathlessness action plan to be made available free-of-charge by the Lung Foundation Australia as a complement to their COPD action plan.  For more information and to complete the survey, please follow this web-link or contact the project team via Breathe@uts.edu.au

How can palliative and end of life care be improved? Complete Marie Curie’s survey to shape future research.

Marie Curie is running a survey asking people living with a serious life-limiting illness, those close to them, and health and social care professionals involved in their care to help pinpoint the key issues that need to be addressed in future end of life and palliative care research.

To take the survey, please visit: https://palliativecarepsp.wordpress.com/survey/

To find out more about the project visit: https://palliativecarepsp.wordpress.com/

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Moving from Talk to Action on Bereavement: Improving Signposting

The Bereavement Charter Group for Scotland and Good Life, Good Death, Good Grief are organising the first in a series of "talk to action" events. It will take place on Tuesday, 23 January 2024 from 2-4pm on Zoom.  The event will focus on the first Bereavement Summit  recommendation: Improving Signposting.

The event is for anyone who feels they can play a role in improving signposting to available bereavement support in Scotland, including: those working in the bereavement sector, whether in the voluntary, statutory or private sector; funeral industry; NHS and social care staff who come into contact with bereaved people including GPs, care home staff, child death review co-ordinators and educational psychologists. Please come prepared to contribute your ideas and to commit to taking practical action on behalf of your organisation.

Find out more and book your place here.

SPPC Annual Conference 2023

Around 160 people attended the SPPC Annual Conference last week, at the Royal College of Physicians in Edinburgh.  Delegates enjoyed a day of insightful talks, breakout sessions, poster display and networking.  Presentations and posters from the day are currently being collated and will be made available on the website over the coming month.

To Absent Friends - 10th Anniversary

Last month saw communities organise all kinds of events to mark the To Absent Friends festival.  A highlight of the week was the Library of Legends, a public art installation by John Martin Fulton and Russell McGovern which welcomed groups and passersby o make artwork in memory of absent friends. Good Life, Good Death, Good Grief members gathered together in the Scottish Storytelling Centre on 1st November to celebrate ten years of the festival, enjoying performances by Edinburgh Makar Hannah Lavery, and the Edinbrugh Brass Band.  Congratulations to Kirsty Cartin who's photo won the Essence of a Memory photographic competition.   

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State of Caring 2023 - A Health and Social Care Crisis for Carers in Scotland

On 23 November (Carers Rights Day), Carers UK launched their second State of Caring in Scotland report, “State of Caring 2023: A health and social care crisis for unpaid carers in Scotland”. This report focuses on health of carers and support from social care and the NHS, and highlights the ongoing and significant struggle that carers face in accessing the services and support they need to provide care and to look after their own health and wellbeing, including to take regular breaks from caring. 

You can download a copy of the report here.

New Animated Film on Body Donation

A new educational resource has been launched by NHS Education for Scotland to provide guidance for health and social care staff in Scotland on what to do after the death of someone who wished to donate their body to medical science. It’s of particular relevance to doctors, but may also be of interest to others (e.g. mortuary, nursing, chaplaincy, care home and / or administrative staff) who are involved in care after a person has died.

View the film here.

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CPD Conference: Delirium in Care Homes - Prevention, Assessment and Effective Management

Organised by Healthcare Conferences UK. Friday 1^st December 2023, online.

For further information and to book your place, visit the conference website here or email aman@hc-uk.org.uk.

Patient Safety in Hospices

Organised by Healthcare Conferences UK. Wednesday 6th December 2023, online. 

For further information and to book your place, visit the conference website here or email aman@hc-uk.org.uk.

A Practical Guide to Effective Non Medical Prescribing in End of Life Care For Current and Aspiring Non Medical Prescribers

Organised by Healthcare Conferences UK. Tuesday 12^th December 2023, online.

For further information and to book your place, visit the conference website here or email aman@hc-uk.org.uk.

Reducing & Managing Pressure Ulcers at the End of Life

Organised by Healthcare Conferences UK. Wednesday 13^th December 2023, online.

For further information and to book your place, visit the conference website here or email aman@hc-uk.org.uk.

Moving from Talk to Action on Bereavement: Improving Signposting

Organised by Good Life, Good Death, Good Grief and the Bereavement Charter Group.  23 January 2024.  Find out more and book your place here.

Marie Curie 2024 Research Conference – ‘Improving End of Life for All’

Organised by Marie Curie. 5-9 February 2024, online. Registration is free.  For further information and to book your place, visit the conference website here.

Advanced European Bioethics Course: “Suffering, Death and Palliative Care”

Organised by the section of Healthcare Ethics, IQ healthcare, (Radboudumc university medical centre). 12 - 15 March 2024, Nijmegen, the Netherlands. For more information please visit the website. Contact: Valesca Hulsman at Valesca.Hulsman@radboudumc.nl.

6^th All Island Children’s Palliative Care Conference: "Challenging the Boundaries: Antenatal to Adulthood"

Organised by the All Ireland Institute of Hospice and Palliative Care (AIIHPC). 25 – 26 April 2024. The Midlands Park Hotel, Portlaoise, County Laois, Ireland. 

To view the programme, submit an abstract, or register (early bird registration opens 2 November 2023), visit the CPCC website.

European Grief Conference 2024

The next European Grief Conference 2024 will be held in Dublin Ireland, November 11^th to 13^th 2024. 

The conference is being hosted by Irish Hospice Foundation with partners Bereavement Network Europe, Danish National Center for Grief and RCSI University of Medicine and Health Sciences.

More details will be added to the conference website in the coming weeks and months: https://europeangriefconference.org/

Education and Training at Macmillan Cancer Support

Macmillan have a wide range of free education and training available on The Learning Hub. To access training you will need to register for an account and be logged in.

• "Reducing inequalities in cancer care for LGBTQ+ communities" - includes an e-learning module, webinars exploring barriers to screening, and looking at how good is our care for LGBTQ+ young people as well as signposting to a range of resources
• "Developing Cultural Competence" – an e-learning programme aims to equip professionals and the wider workforce with skills and knowledge to understand more about culture and how it shapes peoples' beliefs and attitudes towards cancer, to help support people across all cultures living with or affected by cancer.

This e-learning is featured as New Content on the Learning Hub.

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