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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: August

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:

NHS Forth Valley Macmillan Healthcare Support Worker Project

Author(s) Jane Niblo, Sandra Campbell
Macmillan project supporting community teams to provide person centred palliative and end of life care to patients in their own homes, and to support those close to them. To inform and develop a new model of palliative and end of life care to enable patients to die in their own homes if that is their wish to do so. To reduce inappropriate admissions to hospital at end of life and reduce the number of hospital bed days during last six months.

Oral care at end of life

Author(s) Morag Muir, Leigh Deas, Maura Edwards
Caring for Smiles is a national oral health improvement programme which provides training for staff in care homes to support them in delivering daily oral care for residents. Good oral health is a basic human right and maintaining a clean and comfortable mouth is essential during the end stages of life. The Caring for Smiles Guide for Care Homes includes advice for providing oral care to individuals receiving palliative or end of life care who are no longer able to maintain their own oral health. Hands on training for staff is also available and is delivered by Caring for Smiles teams from local health boards across Scotland. This poster aims to raise the profile of the Caring for Smiles programme and to emphasise the importance of oral care for individuals receiving end of life care. This issue is becoming increasingly important as care homes take on more responsibility for end of life care.

Paediatric End of Life Care - A National Managed Clinical Network Approach to Improving Care

Author(s) Dr Natalie Smee National Services Scotland, Dr Morag Campbell NHS Greater Glasgow and Clyde, Dr Mike Winter National Services Scotland
The Scottish Government is committed to support the development and provision of specialist paediatric palliative care services. Integral within, but not exclusive to, is the provision of end-of-life care to the 2,200 patients per year who become unstable and deteriorate towards the end of their natural lives (200 will die), and to the additional annual 200 deaths out-with paediatric palliative care. The provision of end-of-life care is of inviolable importance as experiences shape the child’s legacy and the family’s grief, yet accessibility family choices and service delivery are not equitable. Without a transparent nationally adopted strategy drawn by the shared vision of all committed multi-disciplinary stakeholders, a cacophony of diverse inconsistent practices will prevail. National Services Scotland has launched 'PELiCaN' - the paediatric end-of-life care network - commissioned to improve the national provision of 'family-integrated, personalised, realistic care' to all families whose child is approaching the end of their natural life, regardless of age, ethnicity or geographical location.
Although embryonic, the intention is to facilitate regional roadshows to understand contemporary practices (excellence and deficits) and opinions, followed by a national launch event. The overarching multi-disciplinary steering group will collaborate with existing networks and organisations, and establish informative work-streams (data analysis; structural; operational; educational; miscellaneous - national ethics committee, organ donation). The aim is to ensure equality and improve the burdensome experience of all families facing such a devastating loss by offering deliverable choices that meet the autonomous individualised wishes of the families.

Palliative Care: Succession planning for rare beasties

Author(s) Jenny Doig Developing potential palliative care educators
Palliative care educators are `rare beasties` who either work as part of a generalist team or a small hospice education team. A large part of the palliative care educator`s role involves collaborating and networking with hospices, universities and specialist colleagues. Thus, opportunities for clinical staff to experience this role, prior to appointment, are limited. In August 2018 NHS Lothian Clinical Education and Training staff were offered a development opportunity in palliative and end of life care education.
Aim: To enable staff to gain an in-depth perspective of palliative and end of life care education by shadowing the Macmillan Cancer and Palliative Care Educator, half a day a week for a 3-month period. 7 staff applied and were selected to shadow. Each participant set their own palliative and end of life care learning objectives. Participants met regularly to discuss their objectives with the post incumbent, conducted a literature search, were introduced to palliative care networks, met with relevant clinical staff, and presented a reflective account of their learning The qualitative results of the first three placements will be presented.

Palliative care volunteers in Europe: qualitative analysis of volunteer activities and experiences

Author(s) Ros Scott, Anne Goossensen, Sheila Payne, Leena Pelttari
It is often others, rather than volunteers, who describe their activities and experiences. Led by the EAPC Task Force in Volunteering, this project aimed to enable volunteers to tell, in their own words, their personal experiences and what it means to them to volunteer in HPC.
The aims were to understand: 
  • the experiences of volunteers in HPC 
  • why they work in HPC 
  • what HPC volunteering means to them
Task Force members in seven countries were asked to invite five volunteers to write about their volunteering activities and experiences in their own language. Two prompt questions were given to volunteers: “What do you do as a volunteer?” “What does it mean to you?” Stories were translated into English and a qualitative framework used for analysis.
Results: 
  • In total, 37 stories of 400-500 words were received from eight countries. 
  • Almost all (n=34) volunteers offered practical, emotional, social and spiritual support to adult patients and families. 
  • 32 were involved in diverse adult HPC settings including patient’s homes, hospices, hospitals and care homes and two in community children’s palliative care 
  • All found significant meaning in HPC volunteering, described as an important part of their life and values. 
  • Volunteers described the privilege of being with people at end of life and how much they learn from encounters with death and dying. 
  • Others describe the challenges of HPC volunteering and how their lives are enhanced by their experience.
Conclusion: The narratives gave an insight into personal stories of volunteers in different countries and highlighted many similarities in shared experiences and values. Understanding these perspectives can help HPC organisations to improve how volunteer skills may best be utilised and supported.

Palliative News: Back to the Future

Author(s) Katy Paterson, Jacquie Smith
“Learn from yesterday, live for today, hope for tomorrow” ~ Albert Einstein
The poster will be an illustrative presentation of a six month evaluation of the lived experience of 15 patients who attended Edwina Bradley Day Hospice with a focus of improving symptom burden and functional status. Included will be qualitative and quantitative data presenting the efficacy of patient engagement and participation, the creative approach of a multidisciplinary team and the supportive model nurturing participans to reflect on the past in order to move forward.

Project ECHO: Supporting children transitioning to adult palliative care services

Author(s) Jayne Grant, Danielle Harley
Project ECHO (Extension for Community Healthcare Outcomes) is a FREE collaborative model of clinical education and care management that empowers professionals everywhere, CHAS as a Project ECHO Hub are using its methodology to provide enhanced care to more children in their community. CHAS believes that the ECHO methodology could work well to provide Adult Hospices with an unparalleled forum to network, receive peer support and to share knowledge and best practice around the care of young adults transitioning from children’s hospices. The number of babies, children and young people in Scotland with palliative care needs in 2016/17 was 15,949 aged between 0 – 21. Of these 4,609 were in the 12 – 18 age bracket and 2,108 in the 19 – 21 age bracket. (CHiSP2 2018). There are already over 185 participants registered with CHAS Project ECHO, from varying communities of practice sharing knowledge and skills, making better links with professionals ensuring continuity of care.

Poster Abstracts of the Month: February

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:

How can we ensure a realistic approach to dietetic care in acute medical inpatients? A retrospective cohort study of survival-related outcomes in patients referred to dietetics in NHS Fife


Jamie Kok, Angela Southam, Scot Bullivant, Huai Ling Tan, Joanna Bowden

Introduction: In NHS Fife, acute hospital admissions who are identified as being at risk of malnutrition are referred to dietetics. Our objective was to characterise the acute medical population referred to dietetics over a one month period and to examine their survival-related outcomes.

Methodology: A retrospective cohort study of 206 referrals to the dietetics department of Victoria Hospital, Kirkcaldy in September 2017 was undertaken. Descriptive statistics were produced to characterise the population and their outcomes. Binomial logistic regression and Kaplan Meier survival analyses were also used.

Results: 36% of patients referred to dietetics had died within 3 months of referral. By 18 months, only 40% of patients were still alive. Older age and low albumin levels were associated with shorter survival (p<0.0001). People with cancer had lower one year survival rates than those without cancer.

Conclusion: A significant proportion of acute medical patients referred to dietetics are in their last phase of life. If patients with a poor prognosis are not identified, they are at risk of receiving dietetic interventions that do not add value. Conversely, patients with a good prognosis can also benefit from being identified. This should enable dietitians to tailor their interventions individually, so as to provide the best care possible.

Introducing the Macmillan Support Worker : Innovative Practice within a Community Palliative Care Service


Jan Dobie, Jade Cantwell, Leslie Chapman, Sheila Shaw

The Community Palliative Care Team (CPCT) in East Lothian comprises 3 full time Clinical Nurse Specialists (CNS).

As an organisation, Macmillan has recognised that care coordination is not one person’s role, job or responsibility. It is the joining up of services, coordination, information and communication between care givers, treatment providers and those living with life limiting conditions and their families. To that effect, Macmillan has developed a model and potential workforce solution; a Band 4 Role called a Macmillan Support Worker (MSW).

In discussions with Senior Management within East Lothian Health and Social Care Partnership and Macmillan, the CPCT recognised that a MSW would be of benefit in helping patients to achieve positive outcomes and would also support the team by sharing and coordinating care in a more efficient way. This was a new initiative which had never been tried in Scotland.

Funding was secured from Macmillan Cancer Support for a 2 year pilot project to introduce a Band 4 Support Worker.

This poster will share experiences and data from September 2018 to the current date.

Examples will be provided of what the MSW has been able to achieve and how this has influenced practice and patient and family care.

‘Making Memories’ – An Exhibition of artwork by patients of Victoria Hospice


Amy McNeil

Stigma surrounding hospice care can become a barrier to accessing specialist services. Often misconceptions mean patients who would benefit most from Day Hospice are reluctant to consider attending. Whilst society accepts the need for palliative care, alternative approaches can be made to highlight the Specialist Palliative Care service and engage local communities, helping to change perceptions of the service and patients.

Art sessions are an integral part of Hospice Day Care, providing significant benefits to patients’ health and wellbeing, resulting in a variety of meaningful artwork. Over 3 months in 2018, day patients’ artwork was exhibited in a public art gallery with the intention of engaging the public through art instead of information.

As the exhibition was unmanned the number of visitors and the effect of the exhibition will remain unknown. The majority of feedback came from those already aware of services offered, in particular friends and family of deceased patients, all of who commented on the significance of a having local, non-clinical venue in which to reflect. The exhibition as a whole provided them comfort and a connection to their loved ones.

Overall the exhibition showed the potential for using art to create connections and conversations surrounding specialist palliative.

Music to my ears: Implementing personalised music playlists in a Hospice Inpatient Unit (IPU)


Kim Donaldson, Jen McLean, Liz Collins, Fiona Cruickshank, Erna Haraldsdottir


Creating individualised playlists for people living with a dementia has positive benefits including the reduction of behavioural and psychological symptoms1. As hospices across the UK have been urged to build skills needed to support people with dementia2 we decided to implement Playlist for Life3 within our IPU as a creative way of offering support to patients and their families. Although our initial aim was to work with people with a dementia, we have also used Playlist for Life3 for people with other cognitive impairments or none at all.

Using Playlist for Life3 has:

Enabled life story telling and reminiscing

Supported the management of breathlessness and anxiety

Increased sense of wellbeing

Supported Advanced Care Planning

Been a legacy for family members.

Our next steps are to:

Continue to establish an evidence base in a hospice setting through further evaluation

Establish referral criteria.


Individualised music playlists can be an effective therapeutic tool in a hospice setting.

1Bowell, S. and Bamford, S.M. 2018. What would life be – without a song or a dance, what are we? ILC –UK: London.

2Hospice UK. 2015. Hospice enabled dementia care: The first steps. Hospice UK: London.

3Playlist for Life. 2019.

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: 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: 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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