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Sharing Current Scottish Practice

This blog provides an opportunity 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 get in touch.

Poster Abstracts of the Month: January

The SPPC Annual Conference in 2019 featured 32 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on:

CREOL - A realistic medicine approach to supporting compassionate care of the dying in any setting


Geraldine Finnan, Michelle Scott, Julia Hume

The Chief Medical Officer for Scotland presented an invitation for all health and social care professionals to make a shift in the way they support patients and carers. Realistic medicine is an approach and attitude where shared decision-making happens through respect for the individual’s values, with a focus on what matters to them.

For Palliative Care specialists it represents the “mainstreaming” of all the core aims and values of what palliative care has at its heart – recognition that this is every care professional’s job. This approach enables the benefit/burden balance of realistic treatment choices to be truly shared and understood and honest and open communication can empower patients and families.

The CREOL is a document that was developed to support delivery of compassionate person-centred high quality end of life care (EOLC) in all settings. A truly realistic medicine approach was integral to the design. It has been designed to be intuitive and flexible, allowing episodes of care and assessment to be documented in a clear and concise manner, which allows trends and patterns to be identified quickly.

The aim is to support and improve EOLC provision, promote discussion around dying, and ensure that clinicians value what matters most to the dying patient in any setting.

Developing an Adult Palliative and End of Life Care Plan for Angus Health & Social Care Partnership


Elaine Colville, Sally Wilson, Marion Gaffney, Dr Deans Buchanan

Angus Health and Social Care Partnership have co-produced a collaborative and integrated plan for Adults with palliative and end of life care (PEOLC) needs. This has been produced following consultation and engagement from a wide range of stakeholders including health, social services, voluntary and independent services, carers and the public. The plan is shaped around people’s current experiences, understanding and hopes regarding PEOLC in Angus. We are proud to be the first Health and Social Care Partnership in Scotland to develop a dedicated plan for PEOLC and this strengthens our commitment to achieve the best Palliative and End of Life Care that we can.

What did we do?

Review of literature and strategic guidance

PEOLC Steering Group convened

Engaged widely with carers, public and workforce

Themed feedback which identified our strengths and gaps.

We asked:

What do you think good palliative and end of life care look like?

What do you think we could do differently?

Is there something else you want to tell us about palliative and end of life care?

The plan outlines 6 outcomes:

Compassionate and person centred care

Care as close to home

Compassionate communication and conversations

Getting it right for the family

Education and development for the workforce

Public health approaches to palliative and end of life care.

Next steps involved the development of an Action Plan and Implementation.

Dying well night and day: A mixed-methods evaluation of out-of-hours services in Scotland for people with palliative care needs


Bruce L. Mason, Scott A. Murray, Marilyn Kendall, Nicole Brun, Anne Finucane, Emma Carduff, Andrew Stoddart, Lewis Ritchie, Jeremy Keen, Marie Fallon, Sian Tucker, Erna Haraldsdottir, Lorna Moussa, Stella Macpherson, Joannes Kerssens, Sheonad Laidlaw, Kirsty Boyd,

Background: Scotland’s national datasets provide insights into use of out-of-hours (OOH) services in the last year of life.

Methods: Patient data from the national register of deaths (2016) linked to five urgent/ unscheduled care datasets within a Data Safe Haven was analysed for every episode of OOH care in the 12 months before death. Three qualitative case studies in diverse regions of Scotland involving patients, carers, and healthcare professionals explored decision-making.

Results: Of 56,407 people who died in Scotland in 2016, 98% had a long-term illness (cancer 28%, organ failure 38% and frailty dementia 25%). Overall, 95% (53,852) used an OOH service; 50% of this in the last 2 months of life when calls to NHS 24 and primary care OOH increased proportionately but cost a fraction of hospital care. People with organ failure, especially from lower income quintiles, tended to call 999 and attend A&E. Those with cancer had more bed days and were the highest users of primary care OOH. Perceived legitimacy, prior experience and enhanced access to services influenced people’s decisions about seeking help.

Conclusions: Users find OOH services difficult to navigate but need to contact them more as death approaches. Patterns of use were impacted by diagnosis, deprivation and proactive planning.

Hospice Incident Reporting: Our Transition from Paper to the Web


David Manion

Clinical governance has long been recognised as the system with which health organisations are accountable for continuously improving the quality of their care and the way that service is delivered. Incident reporting is a significant part of this process, in it provides an indication as to the level of reporting culture in place within an organisation with the added benefit of ‘soft intelligence’ included in the incident’s descriptive narratives. This investigation and review process can provide the basis of continued work into improving working practices and quality of care.

During March 2019 St Columba’s new web based incident reporting system went online and staff went from a traditional paper form based reporting process to a data management system. The system would not only provide Incident Reporting but also Facilities Management, Complaints, and an electronic Risk Register for the hospice.

We have taken this point in time (6 months) as a good opportunity to document the benefits and difficulties experienced during this period of innovation and hope the example provided might help other organisations when considering a similar reporting solution.

Poster Abstracts of the Month: November

The SPPC Annual Conference in 2019 featured 32 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on:

A carer intervention to improve support for patients with delirium in a palliative care inpatient setting: A quality improvement approach

Author(s) Max Fend, Juliet Spiller, Anne Finucane, Sarah Mabelson

Introduction: Delirium is a clinically significant condition for palliative care, found in up to 88% of inpatients at the end of life. There is little evidence for drug therapies to treat delirium in terminally ill adults, and recent findings suggest greater emphasis should be placed on supportive care. This project, using a quality improvement (QI) approach, aimed to improve delirium-related communication between patients’ families and nurses at the Marie Curie Hospice in Edinburgh, thereby aiding non-pharmacological management.

Methods: A baseline questionnaire assessed how nurses approach discussing delirium with family members. A leaflet to aid these conversations was introduced and tested in the inpatient unit. Using feedback from nurses and family members/carers, the leaflet was altered. This process of implementation, feedback, and alteration, went through four PDSA cycles. Results: Leaflet feedback was positive from nurses and family carers, both claim it was helpful. In our final questionnaire, all nurses said they would use the leaflet in future interactions with family members.

Conclusions: Despite small participant numbers this project suggests that a delirium leaflet for families is a useful and popular tool that helps informal carers to support their patient. More Quality Improvement cycles are required.

A Service Evaluation of the Fatigue, Anxiety and Breathlessness (FAB) Programme ran in day therapies at the Marie Curie Hospice in Edinburgh

Author(s) Kim Pollock

The FAB programme is multidisciplinary led and has been part of Marie Curie Edinburgh Hospice’s day therapies since February 2017. The programme considers the management of symptoms of fatigue, anxiety and breathlessness for patients living with progressive, life limiting conditions. It has been designed to enable patients to understand the symptoms of their illness, find coping strategies and learn techniques that can help to relieve and manage their symptoms aiming to achieve the best possible quality of life. The aim of this service review is to evaluate the effectiveness of the FAB programme over a two-year period by exploring the nature of referrals, uptake of service and attendance, follow up input after completion of the programme, patient feedback and outcome measure scores. The evaluation highlighted that the majority of patients recorded improvements in their palliative care outcome measure score. It also concluded that increased number of patients completing the programme coincided with an increased number of external referrals received. The evaluation also highlighted that a large number of patients with a non-cancer diagnosis are being referred to FAB. This evaluation and data obtained highlights that the FAB programme supports Marie Curie’s strategic plan to reach more people living with a terminal illness and help people regardless of their diagnosis as soon as the terminal phase of illness is identified.

Are Anticipatory Care Plans (ACP) implemented appropriately in patients who die soon after an Emergency Department admission?

Author(s) Polly Black

An Anticipatory Care Plan (ACP) outlines the appropriate clinical interventions and patients’ preferences to be adopted during end of life care. This study aims to identify the number of patients who were brought to an Emergency Department (ED) close to their death who may have benefited from an ACP but did not have one. ACPs were graded in terms of their usefulness and to understand if the ACP was followed during the admission that led to the patient’s death. One hundred hospital records were analysed. At least 1 in 5 patients may have befitted from an ACP but did not have one. Many ACPs were not completed comprehensively; vital information such CPR status was omitted in some cases. At the time of death, ACPs cannot always be followed due to the clinical status of the patient i.e. the patient is suffering from an unpredicted and acute condition requiring hospital management. However, 4% of patients (all living in nursing homes) were brought to the ED for emergency care in whom it does not appear appropriate, nor in line with the patient’s wishes, to do so. The findings from this study warrant further research to identify reasons for ACPs not being implemented.

Cat out of the Bag

Author(s): Lynsey Graham, Lisa McConnell, Katy Paterson, Jacquie Smith

‘Cat out of the Bag’ is a peer driven discussion group which focusses on the feelings, thoughts and questions patients attending the Edwina Bradley Day Hospice may have relating to the diagnosis, status of illness, symptom experience, prognosis, lifestyle, loss, wishes, preferences and plans. Concepts discussed range from Power of Attorney to family to Funeral Planning and everything in between. Discussions centre upon each concept as it is selected from the bag, so everyone’s concept matters.

Poster Abstracts of the Month: October

The SPPC Annual Conference in 2018 featured 48 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on:

Tackling Fatigue; Take charge! Recharge!


Donna Bruce

St Andrew’s Hospice Occupational Therapist has provided fatigue management as part our services for a number of years. However, following repeated requests from healthcare professionals in the community we agreed to develop and pilot an education session for patients on self-management techniques for fatigue. The aim of the pilot was to provide patients with adequate knowledge, empowering them to manage their own symptoms thus allowing them ‘to longer healthier lives at home or in a homely setting’ (Scottish Government 20/20 vision, 2011)

The Session was developed and ran by our specialist Occupational Therapist and consists of a one-hour session which teaches the concept of energy conservation in managing fatigue and introduces self-management tools such as the energy battery and activity diaries.

35 patients completed evaluation forms and the results show that 100% of attendees reported that they had learned techniques which could help them manage their fatigue.

Comments included:

‘To prioritise, to stop and think, to realise certain tasks can wait.’

‘Session was excellent and at right pace. Provided a much better understanding of fatigue’

Following the pilot, the education sessions currently run once per month and are led by a Rehabilitation Support Worker.

The Coracle Project - Art and Bereavement Support


Suzie Stark

Art and Conversation - Painting a Grief Journey

People who had completed 1:1 bereavement support sessions at a hospice were invited to take part in an art-based group project. The Coracle Project consisted of six sessions facilitated by the chaplain. The group explored words and images that encapsulated aspects of a grief journey with which all participants identified.

The analogy of being at sea in a small craft was used by the chaplain in 1:1 bereavement support sessions and was familiar to most of the group. The artwork depicts three different stages of a grief journey, noting that progress is not linear and stages might be experienced many times. Words, colours and images were used to create ‘mood boards’ and from these three paintings were produced - the turmoil of raw grief, the sense of being lost in fog and the longed for, but often elusive, calmer waters.

The paintings have been exhibited and used as conversation starters to help others discuss their feelings of loss and bereavement, demonstrating how conversation and art in a safe group environment can be beneficial for those taking part as creators and leave a legacy for others struggling with their own losses.

The FLTTN (Forward Looking To The New) Project


Claire Coleman-Smith; Niki Ferguson; Janette McGarvey

Story of the FLTTN Project:

At the Prince and Princess of Wales hospice we have an inclusive approach to caring for everybody affected through life-limiting illness and we deliver our holistic compassionate care, for people at the most difficult times of their lives; for patients, family members, carers and friends. Our specialist (bereavement) Butterfly Service, funded by the Big Lottery, specifically looks after children, young people and their families.

As part of the development of the butterfly service and inspired by the upcoming move to our new home at Bellahouston park we have invited a working group of young people with connections to the Butterfly service to co-produce a transitional creative project (THE FLTTN PROJECT- Forward Looking to The New). The project aim is to provide a platform for children and young people (CYP) to voice their collective experiences and thoughts on the transition from the historic Georgian building on Carlton Place to the modern 21st century new build in Bellahouston Park. This will involve CYP exploring all areas of the arts (Visual art, Music, Digital (film, photography and animation) Creative writing and Performance) to produce content for an exhibition to be held in 2018 (Year of the Young person) in the new hospice.

The emphasis is not necessarily on each CYP telling their own personal story about their connection to the hospice but rather to explore broadly the theme of transition and change; individually and/ or as part of a small group. The CYP will consider marking endings and establishing new beginnings, linking the past to the future, and how the spirit of a place can transition and evolve into a new environment to form new memories.)

Timely identification and support for carers of people at the end of life through the Adult Carer Support Plan


Emma Carduff; Richard Meade; Susan Swan


The Carers (Scotland) Act (2016) places a duty on local authorities to prepare an Adult Carer Support Plan (ACSP) for any carer who requests one or is identified as such. From 2020, this will be assisted by a fast track process for carers of people in their last six months of life.


To provide evidence on the supportive needs of carers to inform recommendations regarding the timescale for the creation of fast tracked ACSPs under the Carers (Scotland) Act (2016).


The study triangulated data from a literature review, qualitative secondary analysis (n=19 interviews; 3 focus groups) and two primary focus groups with bereaved carers (n=11).


Themes included; barriers to and triggers for identification and needs including physical support, psychological support, respite, information, communication, co-ordination and competing demands. Additional themes were speed of decline and end of life care.


Health and social care professionals need to take a radical, reactive move to presume that every patient has a carer and ensure they understand their entitlements. Carer identification is everyone’s responsibility and it should be the ambition of the Carer (Scotland) Act (2016) that this happens early in the illness trajectory. In so doing, rapid assessment and support can be initiated to help carers navigate and cope with an uncertain, often rapidly deteriorating illness trajectory.

Triggers for the Pharmacological Management of Delirium in Palliative Care


Catherine Fairfield; Anne Finucane; Juliet Spiller


Delirium is a serious neurocognitive disorder with a high prevalence in palliative care. There is a lack of evidence of benefit for pharmacological interventions such as antipsychotics.


1) To determine the prevalence of delirium in a palliative care inpatient setting and how it is documented/described by staff. 2) To determine the extent delirium screening tools are used in its identification and how they are viewed by staff. 3) To determine the triggers for pharmacological intervention in managing delirium in palliative care.


A case-note review of admissions to Marie Curie Hospice Edinburgh from 1st-17th August 2017 was performed as were small group interviews with hospice doctors and nurses.


21 patients were reviewed. 76% had documented symptoms of delirium and 62% were screened on admission. Its documentation/description was variable and the term itself was used infrequently. Midazolam was the most commonly used medication. Triggers for pharmacological intervention included failure of non-pharmacological measures, distress, agitation and risk of patient harm.


The infrequent use of the term delirium suggests it may be under-recognised.

Triggers for pharmacological intervention are in-keeping with guidelines, however the level of understanding of delirium’s presentation varied between participants.

Use of Propofol in a Specialist Palliative Care Unit


H Crockett; C Ross

Purpose of audit:

Propofol is a fast-acting general anaesthetic agent. However, beneficial use of propofol in palliative care has also been reported, in refractory agitation. This has informed the practice of our specialist palliative care unit. The purpose of the audit was to monitor adherence to the unit’s propofol protocol.


A protocol for propofol use in refractory agitation was developed in 2011 in our specialist palliative unit. A proforma was used to document use over the next six years.


There were nine episodes (seven patients) of propofol use. The indications for use included refractory agitation, status epilepticus, and sedation for NIV removal. In non-seizure related episodes, a benzodiazepine and antipsychotic had been used prior to propofol, as a minimum. The propofol infusion was stopped when the patient died in seven episodes, and when symptoms had resolved in two episodes.


Propofol use is well documented and has a valuable role in palliative care. A new proforma has been written to allow for more robust auditing of the use of propofol. Propofol has been used very infrequently, but the impression of the specialist staff is that is an invaluable tool for very difficult and refractory cases.

Views of Care - Delivering End of Life Care Now and Improving for the Future


Bridget Johnston; Elaine O’Donnell; Patricia O’Gorman; Claire O’Neill; Jackie Wright

Obtaining feedback on End of Life Care from dying people and their relatives is difficult. This pilot project tested the use of questionnaires to gather views on end of life care from relatives /friends in the acute setting.


• Test the feasibility of collecting feedback using questionnaires

• Capture qualitative Views of Care

• Identify areas of good practice and areas for improvement

A sensitive questionnaire was issued to relatives in pilot sites when collecting the medical certificate of death. After 6- and 12-months questionnaires were issued to gather staff opinions of the project.

The feedback revealed that high quality End of Life Care is being delivered and that this is important to both relatives and staff. 32 questionnaires were received from bereaved families. Themes emerging included communication, compassion and emotional support. Areas for improvement were also identified.

Staff questionnaires captured valuable feedback both benefits and concerns were identified.

This project has been effective in obtaining valuable feedback from bereaved relatives. The results identify good practice and highlight areas for improvement.

More research is required to identify the optimal timing and method, such as using technology, for obtaining views of care at end of life from bereaved relatives.

What Matters at end of Life - Using Principles of End of Life Care in Clinical Practice


Morven Kellett; Lesley Murciano; Evelyn Paterson; Helen Upfold

This poster has translated the 4 principles of end of life care (ref: Caring for People in the last Hours and Days of Life, Scottish Government National Statement 2013) into more memorable language; Communicate, Collaborate and Co-ordinate, Care and Comfort, Compassion. It has been used to raise awareness of the principles of end of life care and as an educational tool - asking multidisciplinary staff to reflect on how their care delivery aligns with these principles and to identify areas where improvements could be made.

What matters to you?’ Staff perspectives on the identification and documentation of ‘What matters’ and the role of values-clarification in palliative care settings


Anne Finucane; Jack Irvine; Juliet Spiller


Values-clarification has an important role in palliative care for clinical staff and their patients. The question ‘What matters to me?’ forms part of the daily assessment of each patient at the Marie Curie Hospice Edinburgh.


Explore staff perspectives on the role of understanding patient values and their interaction with clinical practice.


A service evaluation investigating the practical application of ‘What matters to me?’ as a proxy question for values identification, using a retrospective case notes review and focus group discussion. Data was qualitatively analysed.


Doctors recorded ‘What matters to me?’ information most frequently (52%). Focus group results indicated widespread understanding of the importance of values to staff personally but revealed varying approaches to electronic documentation. Multidisciplinary team meeting electronic records were found to be less useful than intended. Quality of evidence of community documentation of ‘What matters’ being transitioned to the inpatient setting was, overall, positive. Core themes included family, being at home and general health.


Extensive agreement regarding the positive impact of using the ‘What matters to me?’ question to elicit patient values. Implications for hospice practice include clarifying electronic documentation practices, increased healthcare assistant access to electronic records and regularly updating nursing handover sheets.

Working Together Learning Together, Collaborative Working: Single Nurse Controlled Drug Administration


Irene Barclay; Kim Donaldson; Helen Keefe; Dorothy McArthur; Libby Milton; Dot Partington

Single Nurse-Controlled Drug Administration (SNCDA) was developed in response to registered nurse (RN) concerns that patient waiting times for controlled drugs (CDs) were excessive and the two-staff resource impacted other responsibilities.

SNCDA is used in various healthcare settings and although RNs may have initial anxieties there is no evidence to suggest it has any adverse effect on safety. Many feel it is safer.(1)

A practice development approach was used to elicit the values and beliefs of IPU (Inpatient Unit) RNs surrounding SNCDA which informed policy, procedure, risk assessment and the programme of education. Roll out was gradual allowing confidence building in the process. Following the second successful cohort the clinical pharmacist, working across two hospices, recognised the potential in the second hospice and presented a proposal for collaborative working. Following scrutiny via the second hospice’s clinical governance structure, the two hospices entered into a joint working agreement.

Working in partnership has offered an opportunity to strengthen relationships and ensure quality and equity across both sites. Staff report feelings of autonomy, empowerment and of being more responsive to patient need.

(1) Taylor, V. Middleton-Green, L., Carding S. and Perkins P. 2016. Hospice nurse’s views on single nurse administration of controlled drugs.

Poster Abstracts of the Month: September

The SPPC Annual Conference in 2018 featured 48 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on six of these:

Pressure Ulcer Prevention in Palliative care


Katherine Hynd, Libby Milton

‘Pressure ulcers impose a significant financial burden on health care systems and negatively affect quality of life’ (Moore and Cowman 2013).

Marie Curie (MC) recognised that pressure ulcer (PU) prevention/ management was an area where practice could be improved.



• Creation of link nurse role

• Commitment by MC to support the development of link nurse

• Participation in national MC TV working group


• Review of risk assessment and implementation of updated assessment tool

• Low threshold to reporting all PUs acquired in our care regardless of grade

• Ensuring most appropriate equipment in place

• Review and development of documentation


• Developed teaching package for RNs and HCAs

• All staff included in roll out of teaching – face to face sessions to allow space for group

discussions and individualised learning

• Developed materials to display on the wards

• Link nurse role to offer support and guidance in practice

Cultural shift

• Every PU acquired in our care investigated and RCA completed, with feedback to the team

• Raised profile of patients who are at risk in patient safety briefs


• Incidence of PUs acquired in our care demonstrates sustained improvements, with 9 sequential

months data below previous average.

Raising Death Awareness in Thailand, the Case of Life Unlocking Card Game


Tanida Apichanakulchai; Deans Buchanan; Linda McSwiggan; Tharin Phenwan; Ekkapop Sittiwantana; Judith Sixsmith


Advance Care Planning (ACP) is an agreement of preferred care between patients, family, and the health care team should the patient become incapacitated. However, ACP uptake and awareness is still low in Thailand. The Life Unlocking Card Game is an intervention that aimed to use gamified element to raise ACP awareness. This study assessed the effectiveness of the Life Unlocking Card Game as a tool to raise death and ACP awareness in Thailand.


A retrospective feasibility study using a convenient sampling method with Thais participants who are older than 18 years old. 27 card game sessions were held during January 2014 and December 2016 with 342 participants. We used data from an anonymised pre-game and post-game survey for participants' demographical data and evaluation feedback. Data was analysed using thematic analysis with investigator triangulation.


Three themes emerged; 1) Closeness of death, 2) Co-construction of the meaning of death, 3) the obligation and importance of ACP.

Discussion and conclusion:

The Life Unlocking Card Game is a useful tool to raise death and ACP awareness amongst Thais. Further study is recommended with other groups such as the patients, carers, and healthcare professionals.

ReSPECT - Find out what it means to me


Dr Sean Duignan; Dr Lynsey Fielden; Dr Jennifer McNeill

‘ReSPECT’ (Recommended Summary Plan for Emergency Care and Treatment) is a process which facilitates emergency and anticipatory care planning. All new admissions to an acute ageing and health receiving ward were screened between 10/5/18 and 10/6/18 for ReSPECT ‘triggers’. If trigger positive, retrospective assessment of escalation planning was conducted by reviewing whether there was a pre-existing KIS (Key Information Summary), ReSPECT form or consultant escalation plan on admission. These triggering patients were highlighted to the medical team in the patients notes as a prompt to consider a ReSPECT discussion with patients and families.

Since ReSPECT screening has started and ReSPECT documents have been completed for patients, there has been an increase in the number of documented emergency/ anticipatory care plans in the form of: KIS; admission escalation plans and ReSPECT forms. This reached a total of 100% of patients screening ‘positive for ReSPECT’ in the final week.

Scotland’s first pilot of the ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) process


S Campbell; LA Fielden; D Lynch; K Petrie


Across Scotland, there is no universal process for recording emergency treatment discussions besides DNACPR decisions which have been associated with negative connotations. The ReSPECT process creates personalised recommendations for a person’s clinical care in a future emergency when they are unable to make/express choices. Resuscitation decisions are considered as part of an overall treatment plan. The aim of the pilot was to evaluate ReSPECT by obtaining feedback from patient, carers and staff.


A small pilot of ReSPECT was introduced in 4 key areas (acute care of the elderly ward, adult mental health, day hospice, 2 GP practices) from November 2017 to May 2018. We obtained feedback from patients/carers who had been through the process; public carers forum; staff who had utilised the ReSPECT process.


180 people experienced the ReSPECT process. Patient/ carer feedback was overwhelmingly positive with the vast majority describing the process as ‘excellent’ and the remaining ’good’. All felt that ‘what matters to you’ was considered and they were involved in the decision-making process. Similarly, the carers forum described the process as excellent or good. 94% of staff felt that ReSPECT involves the patient and/or family in decision making. 88% felt ReSPECT would help the individual/ team deliver the most appropriate care for patients. This feedback will be utilised to shape the roll out of ReSPECT across NHS Forth Valley to facilitate truly person-centred care in emergency/ anticipatory care planning.

Sharing the Learning at the Palliative Care in Prisons Conference


Gail Allan


The Scottish prison population is disproportionately drawn from the most deprived areas in Scotland and have an increasing ageing population. The nature of offending and longer prison sentences means there is an increasing number of prisoners who will be facing end of life in prison. In September 2018 the first Palliative Care in Scotland's Prisons Conference took place.


The aims of the conference were to raise awareness about the need for a Supportive and Palliative Care approach in Prisons and share the current work that was taking place in Scotland's prisons.


Invited speakers addressed the issues of why prisons should develop a supportive and palliative care approach. Both NHS and Prison Service staff shared the work they were undertaking in their prisons to address these issues.

Workshops allowed the audience to engage with the staff that works in prisons. They were asked to share what they have done to support palliative care in prisons and who they should connect with to support this work.


Ÿ Increased stakeholder engagement with project

Ÿ Development of Macmillan Palliative care in Prisons Community of Practice

Supportive and Palliative Care in HMP Glenochil


Gail Allan; Fiona Donnelly; Fiona McAinsh


The fastest growing population in Scotland’s prisons is males over 50. The prison health demographics sees the health age of most prisoners as being at least a decade older than the general public, with a shorter life expectancy. A recent report, Who cares? The Lived Experience of Older Prisoners in Scotland’s Prisons by HM Inspectorate of Prisons Scotland highlighted the case of ageing prisoners. It also discussed the challenges for the staff working in prisons in caring for this group.


HMP Glenochil are taking a proactive approach in supporting the staff and people in their prison.


Ÿ Education

Ÿ Use of Early identification tools

Ÿ Improving multidisciplinary working

Ÿ Improving communication systems.


Ÿ Delivered Education sessions including Macmillan Foundations in Palliative Care Programme

Ÿ Development of Palliative Care Champions

Ÿ Development of Supportive and Palliative Care Meeting and Register

Ÿ Development of Gold Standard Folder for Prison use.

Poster Abstracts of the Month: August

The SPPC Annual Conference in 2018 featured 48 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on six of these:

Managing Long Term Conditions in the Community: A Specialist Palliative Care Community Services Approach


Veronica Turnbull

An ageing population is increasing the demand for multi-morbidity care, including palliative care. However, disparities exist in access to palliative care for patients with long term conditions.(1) In Scotland the majority of palliative care is provided by generalist health and social care teams, with support from specialist palliative care professionals.(2) This work considers St Columba's Hospice Community Service developments that have improved access to specialist palliative care for people with long term conditions, and opportunities for next steps. Self-management, integrated working and education of generalist health and social care teams are presented considering challenges, opportunities and recommendations for practice.


(1) Marie Curie (2015). Triggers for palliative care improving access to care for people with diseases other than cancer. Retrieved from policy/policy-publications/june-2015/

(2) Chest Heart and Stroke Scotland (2018) Scottish Non-Malignant Palliative Care Forum (SNMPCF)

Retrieved from:

Multi-Disciplinary Palliative Care for Men Living with Duchenne: A Qualitative Interview Study


Dr Emma Carduff; Dr Sheonad Laidlaw


Duchenne Muscular Dystrophy (DMD) is an x-linked, ultra-rare neuromuscular condition affecting 1 in 3600-6000 live male births. Individuals live with an exceptional illness trajectory of prolonged dwindling, frailty and high symptom burden. A co-ordinated multidisciplinary team approach may increase the survival of those with DMD and improve their quality of life (QoL).


To investigate QoL in adults with DMD living in the West of Scotland (WoS). Methods: The SEIQoL-DW tool was used to assess the five most important elements that contribute to an individual’s QoL – these were then used to guide qualitative interviews with 6 men in the WoS. A thematic analysis was undertaken.


Men living with DMD in the WoS described living good lives but feel “forgotten” due to perceived gaps in their care: poorly co-ordinated and infrequent health care; lack of multi-disciplinary team input and holistic care; and poor or no access to allied health care professionals, for example physiotherapy and psychological support.


Numerous opportunities exist to introduce palliative care gently, as part of the MDT, early on and throughout the illness trajectory. Better co-ordinated multi-disciplinary care may be a solution allowing for an early introduction to palliative care and proactive advance care planning.

Palliative and End of Life Care: What do we know from Hospital, Hospice and Community data?


Aghimien Iyayi-Igbinovia; Andrew Mooney

The Information Services Division (ISD) presents a range of information to support the Scottish Governments Strategic Framework for Action on Palliative and End of life care. Information presented in this poster covers hospital, inpatient hospice and community activities to report on palliative and end of life care. This includes the annual end of life publication, place of death and end of life care pathways.

Palliative care for prisoners: a partnership approach


Dr Rachel Kemp; Libby Milton; Barbara Stevenson (Marie Curie Hospice, Edinburgh)

Gerry Michie; Angela Wotherspoon (HMP Edinburgh)


HMP Edinburgh has one of the highest populations of older, long term prisoners in Scotland. There are specific challenges to ensure high quality palliative and end of life care for this group. Barriers include:

• Identification of prisoners with palliative care needs

• Lack of 24/7 health care

• Timely access to medication

• Prison environment and regime

• Staff confidence and competence

• Serious sex offenders unlikely to be eligible for compassionate release.


We have developed a partnership with our local prison, HMP Edinburgh, to transform the experience of palliative care for prisoners by:

1. Proactive identification of those with palliative care needs

2. Appropriate assessment and management plans

3. Planning to ensure palliative care needs can be safely and effectively met in the hospice or the prison

4. Support for staff

5. Addressing the barriers to out of hours health and social care support and access to medicines.


Initiatives focusing on the following three areas were developed:

• Clinical

• educational

• cultural shift.


• Hospice staff attend prison palliative care meeting

• Prisoners with complex needs referred to specialist service

• Plans in development to access out of hours nursing care and medication

• Commitment to ongoing development work

• Hospice staff supportive and confident to look after prisoners

• Partnership with prison viewed by charity as an opportunity not a threat.


Strategic Framework for Action on Palliative and End of Life Care. Scottish Government, 2015

Older Prisoners: learning from PPO investigations. Prison and Probation Ombudsman, 2017

Health and social care needs assessments of the older prison population. Public Health England, 2017

Palliative Care Guidelines in Practice – Impact on Patient Care


Charis Miller / Alison Winning

In order to assess the impact of the guidelines on patient care, a survey was circulated to palliative care networks and published on the guidelines website. The survey asked five questions to establish which guidelines are most used, how they are used in practice and what alternative sources of information practitioners use.

The poster will showcase key results from the survey and examples of how the guidelines have been used in practice to improve patient care.


Perceptions of palliative care community nurse specialists (CNS) of the feasibility and acceptability of introducing routine screening of delirium in the community palliative care setting


Anne Finucane; Tabitha Kanyui; Libby Milton


Delirium is a frequently misdiagnosed syndrome and palliative care community CNS are the best placed healthcare professionals to assess and recognize it by conducting routine delirium screening in the patients they care for. The 4AT is a brief tool that can be used to screen for delirium in any setting, though has been little evidence to date on its use in hospice settings.


To explore CNS perceptions of the feasibility and acceptability of introducing routine screening of delirium in a community palliative care setting.


Semi-structured interviews with 12 community CNSs from a Scottish hospice.


Using the 4AT for routine screening of new patients referred to a community specialist palliative care team was feasible and acceptable to community nursing staff. Furthermore, staff perceived patients and families as mostly positive about its use. Overall CNS perceived it as useful in aiding early identification of delirium, though there was less consensus around when re-screening should occur.


Further consideration on triggers for re-screening community patients is required, given the fluctuating nature of delirium, and the potential distress it causes.

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