DWP clinical survey consultation on Special Rules for Terminal Illness

The Department for Work & Pensions is currently conducting a review of how the current benefits system supports people living with terminal illness and those nearing the end of their lives. They have launched a clinical survey to gather expert input on the Special Rules for Terminal Illness (SRTI) in the benefit system and the ‘six-month rule,’ which requires a clinician to certify that a patient has fewer than six months to live in order to get fast-track access to benefits. The survey is relevant in Scotland because (though Personal Independence Payment and Attendance Allowance are now devolved to Scotland and follow different rules) Universal Credit continues to be administered by the DWP. The DWP clinical survey will be open until 29 February 2020.

Bereavement Leave

Under 'Jack's Law', working parents who experience the death of a child under the age of 18 will be entitled to two weeks’ paid bereavement leave. New measures will come into force in April.

Neurological care and support: framework for action 2020 - 2025

The Scottish Government has published a new framework setting out a vision for driving improvement in the care and support for those with neurological conditions in Scotland.

Health and social care: integrated workforce plan
The Scottish Government has published a plan setting out future workforce requirements in a national context and providing revised workforce planning guidance to health and social care employers.

Parliamentary question

On 18 December 2018, Bob Doris MSP asked a parliamentary question relating to homelessness and palliative care: To ask the Scottish Government how it plans to extend access to palliative care services for homeless people. The relevant questions and answers can be viewed here: parliamentary question S5O-03928

Scottish Parliament debate on research projections into place of death in 2040

On 8 January the Scottish Parliament debated a motion related to the report The impact of population ageing on end of life care in Scotland: Population-based projections of place of death and recommendations for future service provision, by Marie Curie, the University of Edinburgh and King’s College London.

Scottish Parliament debate: Right to full care to die at home

On 29 January the Scottish Parliament debated motion S5M-19252, in the name of David Stewart, on the right to full care to die at home.

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Grants available for Quality Improvement Projects in Acute Hospitals

A new grants scheme has been launched to support improvements to palliative care in Acute Hospitals in Scotland. The grants scheme is part of the Building on the Best Project, which aims to improve palliative and end of life care on hospital wards in Scotland and in turn improve the experiences and outcomes of patients and their families.

Grant applications are invited from any acute clinical area that can demonstrate a need for improvement in the care being offered to patients who are experiencing a deterioration in their health and facing an uncertain outcome.

More information about the grants scheme is available here: Building on the Best grants

Realistic Conversations – shared decision-making in practice

NES has developed an e-learning module called “Realistic Conversations – shared decision-making in practice” that is designed to be suitable for all health and care professionals. It provides a foundation in the skills, terminology and evidence base for shared decision-making, as well as practical hints and tips.

Enriching and Improving Experience: Palliative and End of Life Care Guidance Toolkit

The Scottish Social Services Council has published Enriching and Improving Experience: Palliative and End of Life Care Guidance Toolkit. The new toolkit aims to provide health and social care workers with clear links, guidance and connections between the Enriching and Improving Experience Framework at the informed level and the required registerable qualifications which are considered integral to the delivery of high quality palliative and end of life care.

Research into training carers to give injectable medications

The Helix are interested in exploring the issues surrounding carers being trained to give anticipatory injections themselves with a view to developing a practical tool to make this easier than is currently possible with the policies that already exist. In research led by Imogen Eastwood, palliative care clinical nurse specialist, they want to explore:

• How might we make managing drugs for carers, safe and easy?
• How might we provide practical education to carers?

Imogen would like to speak to anyone who has had any experience of training carers to give these injectable medications or who is working in an area where this is becoming practice. She would also really like to speak to any carers who have actually had the experience themselves, to learn what would have made it a better experience. If you know of any families affected who you could ask, or if you would be happy to talk to Imogen directly about this, please email: imogen@helixcentre.com

Sharing current Scottish Practice

Each month our blog focuses on a few of the posters displayed at previous SPPC Annual Conferences. This month we look at the following posters from the 2019 conference:

• CREOL - A realistic medicine approach to supporting compassionate care of the dying in any setting
• Developing an Adult Palliative and End of Life Care Plan for Angus Health & Social Care Partnership
• Dying well night and day: A mixed-methods evaluation of out-of-hours services in Scotland for people with palliative care needs
• Hospice Incident Reporting: Our Transition from Paper to the Web

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End of life care is one of the lowest funded areas of healthcare research

Marie Curie analysis of new data from the UK Clinical Research Collaboration (UKCRC), highlights that 0.21% of all non-commercial healthcare research money is spent on palliative and end of life care research, and that palliative and end of life care research is one of the lowest funded (ranked 44 out of 48) areas of healthcare research in the UK.

The impact of population ageing on end of-life care in Scotland: projections of place of death and recommendations for future service provision

Finucane et al. BMC Palliative Care (2019) 18:112 https://doi.org/10.1186/s12904-019-0490-x

This paper aims to project where people will die from 2017 to 2040 in an ageing country with advanced integrated palliative care, and to prioritise recommendations based on these trends.

Electronic care coordination systems for people with advanced progressive illness: a mixed-methods evaluation in Scottish primary care

Finucane et al. British Journal of General Practice, January 2020

This study aimed to estimate the proportion of people with an advanced progressive illness with a KIS by the time of death, to examine when planning information is documented, and suggest improvements for electronic care coordination systems.

Frailty at the front door collaborative impact report

Healthcare Improvement Scotland has published a report on the impact of phase one of the Frailty at the Front Door collaborative. The Frailty at the Front Door collaborative commenced in December 2017 and ended in May 2019. The evaluation report describes lessons that have been learned and summarises the next steps for this work.

10 years of public health palliative care conferences

Kerrie Noonan, Libby Sallnow and Heather Richardson have produced a paper reflecting on ten years of public health palliative care conferences and looking ahead to the next decade. Published in the the Progress in Palliative Care journal, it explores some of the themes that have emerged from the first five biennial Public Health Palliative Care International conferences in Calicut, Dhaka, Limerick, Bristol and Ottawa and discusses developments over that period. The full paper is available here (subscription needed).

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Contract Opportunity: Truacanta Project evaluation

SPPC is currently advertising an opportunity to play a key role in the evaluation of the Truacanta Project. Launching officially in April 2020, the Truacanta Project will support five different communities to undertake local work aimed at improving people’s experiences of death, dying, loss and care. The communities will be supported with community development expertise and advice from the SPPC. We are currently looking to commission support to help us to evaluate the project over a period of 25 months (March 2020-May 2022). More information, including how to apply, is available here: Truacanta Evaluation

Brexit Blog

SPPC Chief Executive, Mark Hazelwood, has written a blog on Brexit - What now? Reality Brexit, and palliative and end of life care. A personal view.

Launch of the new Scottish Network for Acute Palliative Care

The new Scottish Network for Acute Palliative Care (SNAPC) will connect hospital palliative care teams across Scotland to share learning, provide support and facilitate collaboration on issues of common interest. It is part of the Building on the Best project run by the SPPC and funded by Macmillan.

The SNAPC held its first meeting on Thursday 16^th January 2020, in Glasgow. Over 50 representatives of hospital specialist palliative care teams from all the mainland NHS boards attended. The meeting explored what the aims, activities and initial priorities of the network should be. In addition to planning the development of the network the day also featured plenty of networking in action.

Truacanta Project update

Eleven groups have applied to be part of the Truacanta Project, our Macmillan-funded project aiming to support local communities across Scotland who are interested in taking community action to improve people’s experiences of death, dying, loss and care. The Project Manager, Caroline Gibb, has written a blog providing an update on the progress of the project so far.

Good Death Week 2020

This year's Good Death Week will take place from 11-17 May. First held in 2013, it's an opportunity to reflect on what a "good death" would mean for us, and take practical action to plan ahead for it. Have a look back at previous events on our Good Death Week page and get some ideas on how you can take part this year.

Consultation on the future delivery of social care

SPPC is developing a response the Scottish Parliament’s Inquiry into the future delivery of social care and what is required to meet future need. There is more information about the inquiry and background material here. We’d be grateful for thoughts on the following questions posed by the inquiry, plus any other points you consider important for SPPC to raise:

• How should the public be involved in planning their own and their community’s social care services?
• How should Integration Joint Boards commission and procure social care to ensure it is person-centred?
• Looking ahead, what are the essential elements in an ideal model of social care (eg workforce, technology, housing etc)?
• What needs to happen to ensure the equitable provision of social care across the country?

Please send any thoughts, brief or long, to mark@palliativecarescotland.org.uk by 11 February 2020.

What next for palliative care in Scotland?

Over the next year, the SPPC will be exploring what a future palliative care strategy for Scotland might look like. This will include:

• Describing the current context within which people experience death, dying and bereavement in Scotland.
• Looking at the social, political, economic, legal, technological and environmental changes likely to occur in the next ten years, and how these might affect the context in which we live, die and provide palliative and end of life care.
• Articulating a vision for palliative care in 2030.
• Identifying key priorities, actions and responsibilities for improving people’s experiences of palliative and end of life care, death, dying and loss over the next 10 years.

The purpose of this work is to produce an authoritative paper which makes a credible and evidence-based case for action. This can be used by the SPPC and its members to:

• inform and influence future government policy (whether a “palliative care strategy” or other work undertaken at government level).
• inform, influence and support the work of other organisations, including Integration Authorities.
• generate and inform public discourse.

Some preliminary scoping has been done by members of SPPC’s Council, and this work will be discussed at the forthcoming round of SPPC constituency group meetings. All SPPC members and stakeholders will have opportunities to shape and inform this strategy over the coming year.

Updates to SPPC website - Specialist Palliative Care service directory

We have made efforts to update the section of the SPPC website which provides information about specialist palliative care services in Scotland. Please get in touch with susan@palliativecarescotland.org.uk if you spot any further amendments required.

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Evaluating the Clear Pathway

Clear Pathway provides a framework for NHS Boards on best practice working with third sector partners to engage volunteers in NHS settings. Voluntary Health Scotland is evaluating the impact of Clear Pathway and is keen to hear from organisations who engage volunteers in NHS settings. If you are involved in this type of work they'd be grateful if you could complete this online survey which aims to understand awareness of the guidance and, where relevant, its impact on volunteering in NHS settings.

Experience sought to inform Scottish social security system design

The Scottish Government has commissioned KSO Research to speak directly with people who have experienced the social security system following a terminal illness diagnosis and/or following the death of a loved one. It is planned that the feedback will be used by the Scottish Government and Social Security Scotland to help them build a new system in Scotland that puts people first. If you know someone who would be willing to meet with a researcher from KSO Research contact the lead researcher, Kate Skellington Orr - kate@ksoresearch.co.uk or phone 01355 301399. More information is available here: information sheet.

Funerals

• The Funeral Planning Authority has a new Code of Practice (with effect 1^st January). This has a number of revisions, in particular a section on Treating Customers Fairly especially those who are potentially vulnerable.
• The Fair Funerals Campaign has introduced a new Fair Funerals Pledge for funeral directors.
• Quaker Social Action has published a report - Speaking truth to power: a decade of groundbreaking work on funeral poverty.

Sands Lothian has changed its name

The Stillbirth and Neonatal Death Society, Sands Lothian, has changed its name to Held In Our Hearts. The new name, website and logo are part of a relaunch that aims to highlight the core function of the charity which offers baby loss counselling and support to all bereaved parents in Lothian, and is now expanding support services into Fife and Forth Valley NHS areas.

Hospice Care Week

Hospice Care week 2020 will take place from 5-11 October.

In the media

Highland Times: The right to die at home is a basic human right.

The Herald: The right to morphine. With the rise of cancer in Malawi comes the need to fight its pain

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Save the date - SPPC Annual Conference 2020

Paediatric End of Life Care Network (PELiCaN) Introductory Roadshows

A Practical Guide to Effective Non Medical Prescribing for Pain

Organised by Healthcare Conferences UK. 6 March 2020, London. More information is available here: weblink.

Reducing & Managing Pressure Ulcers at the End of Life

Organised by Healthcare Conferences UK. 27 Mar 2020, London. More information is available here: weblink.

Association for Continence Advice (ACA) Annual Conference and Exhibition 2020

18th and 19th May 2020, Bristol More information is available here: weblink.

Revaluing death: The Lancet Commission on the value of death

Organised by the Royal College of Medicine. 17 Jun 2020, London, More information is available here: weblink.

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

Organised by the European Association of Palliative Care and the All Ireland Institute of Hospice and Palliative Care. 14-15 October 2020, Belfast. More information is available here: weblink.

St Columba's Hospice/Queen Margaret University programmes of study

St Columba’s Hospice in collaboration with Queen Margaret University provide two programmes of study:

• The Graduate Certificate in Palliative Care
• The MSc Person-centred Practice (Palliative Care)
• Postgraduate Diploma Person-centred Practice (Palliative Care – Advancing Clinical Practice)

Further information about the modules which are running 2019/20 is available here: weblink. If you would like to discuss your learning need/mode of study please contact: Janice Logan. If you have any difficulties applying via the Queen Margaret University website, please contact Sue Thorburn on 0131 551 7710.

St Margaret of Scotland Hospice courses

A full list of courses delivered by St Margaret of Scotland Hospice is available on their website.

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