Impact case study database

Impact on Scottish Government strategy and policy

Timely identification of people with any advanced or life-limiting illness is the first commitment of the Scottish Government Palliative Care Strategy for 2015–2021 [5.1a, b], reflecting the UoE PPCRG’s key research finding. This strategy recommends SPICT in primary care settings to identify people for palliative care assessment. The Healthcare Improvement Scotland toolkit for patient identification and anticipatory care highlights the benefits of using SPICT [5.1c]. The Scottish Government lead for palliative care confirms that “research by the PPCRG, and especially the SPICT, has been instrumental in the successful delivery of palliative care earlier, and to many more people in Scotland” [5.1d]. The NHS Scotland National Digital Platform, currently under development, will replace the Key Information Summaries (KIS) and include SPICT as a recommended tool to prompt care planning [5.1e].

Impact on Scottish legislation

UoE palliative care research has directly informed 2 key bills passed by the Scottish Government.

The first provides more financial support for family caregivers [Carers (Scotland) Act 2016; [5.2a]. The second legislation means people with any advanced progressive condition receive financial support earlier and regardless of diagnosis [Social Security (Scotland) Act 2018; [5.2b]. This Social Security Act was widely reported in mainstream media, for example by the BBC [5.2c]. The Head of Policy & Public Affairs for the UK charity Marie Curie, who campaigned actively for this legislative change, citing UoE research, said; “This research helped us show MSPs [Members of the Scottish Parliament] in the Scottish Parliament that people with terminal conditions in addition to cancer also need a new fair definition of terminal illness” [5.2d]. All 4 ‘special rules for terminal illness’ in the Act (no minimum period; no requirement for assessment; eligibility from date of application; entitlement to maximum amount) stem directly from UoE research [p.59; 5.2b]. These changes to national benefits are being applied in clinical practice using the SPICT to guide assessment and eligibility [5.2e].

Impact on clinical practice in the UK

Since 2019, Scottish and English General Practitioner (GP) contracts have instructed NHS Primary Care Organisations and GP practices to implement community palliative care for people who need it, and highlight SPICT as a key tool to identify more patients [5.3a, b]. GPs in Scotland now complete electronic KIS to communicate people’s care plans to NHS 24, GP out-of-hours services, hospitals and the ambulance service as part of routine care.

Following the widespread practical uptake of the SPICT in Scotland, the number of patients receiving palliative care planning documented in a KIS before they die increased from 38% in 2011 to 60% in 2014 and 69% in 2017. These people also received coordinated care planning much earlier; a median of 10.3 months before dying in 2017 compared with 4.1 months in 2014 [5.3c]. Furthermore, within 3 months of the start of the Covid-19 pandemic, the number of KIS in Scotland rose from 4% of the population to approximately 17%, indicating the extent to which proactive anticipatory care planning is established as essential to good patient care [5.3d].

The Royal College of General Practitioners and Marie Curie published the Daffodil Standards in 2018, defining UK-wide core GP standards for palliative care in advanced, serious illness and end-of-life care. This resource combines policy recommendations with educational resources and is being re-launched in 2020 as part of the COVID-19 response. Standard 2 “Early Identification” refers to key PPCRG research and recommends SPICT [5.4a]. The Royal College of Physicians report “ Talking about Dying” seeks to offer advice and support for any doctor on holding conversations with patients much earlier after the diagnosis of a progressive or terminal condition and recommends SPICT for patient identification to prompt timely discussions about palliative care [5.4b]. In Scotland, SPICT is being used to identify people who could benefit from the ReSPECT process, which is the Resuscitation Council UK’s care-planning process built around a summary of Recommendations for Emergency Care and Treatment for when a person lacks capacity to make or express choices [5.4c].

Impact on global policy and practice internationally

The SPICT has been translated and revalidated into 10 languages (French, German, Spanish, Italian, Portuguese, Dutch, Danish, Swedish, Japanese and Brazilian Portuguese) and at least 7 further translations are in progress to support good practice and train GPs, hospital doctors and other clinicians. 86 SPICT Partners routinely use a version of SPICT in more than 30 countries, and over 4,000 people are on the current SPICT mailing list. SPICT website analytics show that SPICT downloads have been rising steadily since 2014, numbering 128,100 by November 2020.

Since 2014, national bodies and healthcare providers in many countries including Canada [5.5a,b] and Australia [5.5c] have embedded versions of SPICT in their clinical management systems and recommended it as an identification tool to support delivery of systematic, early palliative care and to support care planning in educational resources.

UoE research has been instrumental in developing “a deeper understanding of illness trajectories and how generalist and specialist palliative care complement each other in primary care settings” as stated by the President of the European Association of Palliative Care (EAPC) [5.6a]. The information provided via the EAPC Primary Care Toolkit (including use of SPICT) means early identification of palliative care needs in primary care is now national policy in many European countries [5.6b]. In 2018, 9 out of 34 countries reported financial incentives for early identification [5.6c]. The French National Plan for the Development of Palliative and End of Life Care (2015–2018) recommends early identification of patients, involvement of primary care professionals and use of SPICT-FR [5.7a]. In Belgium, a Royal Order recommends use of SPICT-BE to identify palliative patients [5.7b]. The Danish Health Authority issued a guide entitled ‘’Recommendations for palliative action’’, which recommends SPICT-DK for use at the primary level [5.7c].

In addition, 3 key World Health Organization documents (2014, 2017 and 2018), all citing UoE research and specifically the SPICT, state the need to integrate palliative care for patients with all life-threatening illnesses in the community as being a core aspect of primary healthcare [5.8].