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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.

Inspiring Leadership programme an investment in high quality healthcare

A new pilot project offers a safe haven for band six palliative care clinical nurse specialists to share and learn from each other.

A group of eight band six clinical nurse specialists are the first to take part in a new Inspiring Leadership programme, jointly delivered by The Prince & Princess of Wales Hospice, Accord Hospice and NHS Greater Glasgow and Clyde and NHS Education for Scotland.

Masterclasses and workshops are combined with action learning and a quality improvement project, and participants have the opportunity to have their work accredited by Glasgow Caledonian University at Masters level.

“The 12-month programme was set up after recognising a potential gap in knowledge. Band six clinical nurse specialists in palliative care are working in a time of organisational change with increasing complexity around their specialist role. Some staff have reported feeling vulnerable and anxious as they struggle to deliver high levels of care to patients and families,” explained Jane Miller, education facilitator at The Prince & Princess of Wales Hospice.

“It now offers a safe space for clinical nurse specialists taking part to share and learn from each other, while embedding the values, behaviours and attitudes of leadership skills.

“This provides a foundation to support greater successional planning in palliative care and increase the knowledge of those taking part, as well as their understanding of quality improvement methodology supporting individual quality improvement action plans.”

A key goal is to provide training in leadership for this cohort of palliative care nurses alongside robust evaluation of the programme with the view to this becoming a nationally recognised palliative care leadership programme.

“Newly appointed staff, in particular, have been reporting an increase in stress levels within their teams, and with the number of band six palliative care clinical nurse specialists in acute settings increasing, it is essential to support and develop them,” added Jane.

“A move towards mentorship and succession planning paved the way for this new programme. It now provides an opportunity to continue building leadership capacity across NHSGGC palliative care teams and ensure we have leaders who are prepared for senior strategic roles in the future.

“The progamme calls for a high level of investment from those taking part, as well as the hospices involved. An investment in leadership is an investment in high quality healthcare – essential to delivering the future in NHS Scotland.”

By the end of the exercise, clinical nurse specialists taking part will have had a chance to build their self awareness, personal effectiveness and resilience. They will also be able to show leadership behaviour that is consistent with creating an enabling culture to transform services for patients and families.

Providing effective leadership and management in teams and across professional and organisational boundaries will focus on service excellence. And creating the conditions for staff to play to their strengths, think creatively and work collaboratively will overcome obstacles in the change process.

At the end of the programme, a celebratory event in February 2018 will give those taking part an opportunity to showcase their Quality Improvement Project work.

By Angela McManus, Communications manager, The Prince & Princess of Wales Hospice

Poster Abstracts of the month: September

The SPPC Annual Conference in 2016 featured 36 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:

"The Breath of Life: The Whole Shebang!" A Quality Improvement Project to Develop a Self-Management Programme for Breathlessness


Dadd M, Milligan S, Mills A, Murray R, Park R, Rooney KD and Sime C

Background: Breathlessness is a distressing and complex symptom that can profoundly affect a person’s life, leading to loss of independence, increased distress and reduced quality of life. Evidence suggests that in conjunction with optimised medications, teaching people self-management techniques and offering psychological support can improve physical well-being, personal coping strategies and quality of life.

Project Aim: To develop a sustainable 12 week self-management programme for people living with end stage breathlessness.

Methods: Utilising the model for improvement, the multidisciplinary team set an aim, and developed a change package informed by current evidence. Continuous Plan, Do, Study, Act (PDSA) cycles were used to improve the programme. Twelve potential participants were identified and four accepted the invitation and completed the programme.

Results: Improvements were identified in participant’s social capital, long-term coping strategies and self-management of their breathlessness. However, the patient-reported outcome measures demonstrated few sustained improvements in symptom burden.

Conclusion: In keeping with current evidence, this project found most people living with breathlessness do not require a self-management programme. However, this pilot confirmed there is a need to provide additional support for some people living with complex symptoms. Furthermore, using a continuous improvement approach facilitated the co-production of a successful self-management programme.

The Development of Carer Services within the Prince and Princess of Wales Hospice


McCaffrey S and McNair T

The Carers Choice Service offers carers of people with palliative care needs with an opportunity to have a short break from their caring role, safe in the knowledge that their loved one is being cared for in their absence. The Bereavement visitor’s service offers a service of support to family members who are experiencing normal grief, with well trained and supervised volunteers. Both services offer the flexibility of being seen in your own home.

The poster highlights the development of Carer Services within the Prince and Princess of Wales Hospice.

Feedback from carers describe the benefits of accessing supports away from the cared for person’s home. However they also describe the stress and anxiety about leaving the cared for person on their own, particularly when the caring role becomes more demanding or the health of the cared for person is less stable or predictable. Developing a therapeutic befriending service for patients, will allow the carer to have a break from caring with the knowledge that their cared for person is well looked after, with both the carer and cared for person benefitting from the project.

Following the death of patients, carers are offered a wide range of services by the family support service, one of which is one to one counselling. However, a large number of bereaved family members experience normal grief, which does not require formal counselling. The bereavement visitor’s service fulfils this role. Offering knowledge and understanding of normal grief process provided in the bereaved persons home.

Turning Best Supportive Care into Active Care. A service development for patients with advanced lung cancer


Bowden J, Boyce S, Fenning S, Macpherson C, and Scragg S

In Southeast Scotland, approximately 40% of patients with lung cancer are for ‘best supportive care’ at diagnosis. Many more transition into BSC following palliative treatment/disease relapse. But there is no consensus about what constitutes BSC and who should deliver it. As a consequence, patients, carers and families can enter a care void and professionals are unclear about who is providing what support.

For those in the BSC category, survival is usually in the order of weeks. High rates of comorbidity and socioeconomic deprivation coinciding with rapidly progressive and symptomatic cancer, predisposes patients to apparently unpredictable crises and hospital admissions.

Our NHS Fife palliative care service, supported by Macmillan and government funding, has developed an early palliative care intervention for patients with lung cancer for BSC. We now see all such patients from the point of diagnosis, in all care settings.

We report evaluation findings following 18 months of the pilot service, including our impact on quality of care and experience, hospital admissions and place of death. We consider which other patients, with both cancer and non-cancer diagnoses, might benefit from a ‘BSC’ approach. Finally we reflect upon the challenges of developing, delivering and evaluating a new service.

Understanding complex need in palliative care: the perceptions of professionals across 3 settings


Carduff E, Finucane A, Johnston S, Morrish J, Spiller J and Winstanley C

Introduction: Complex needs for palliative care patients are not well defined, yet clarity is necessary to meet the needs of patients and their families in all settings.

Aim: To explore professionals’ understandings of patient complexity in palliative care across 3 settings.

Methods: We triangulated the findings from 3 qualitative studies. Interviews were conducted with professionals from primary, specialist palliative and acute care, coded thematically and analysed by each study researcher, independently. As a team, a framework was devised to comprehensively collate, compare and contrast all three sets of results.

Results: Thirty-four interviews were conducted. A number of themes spanned all three settings. The interaction between diverse physical, psychosocial and spiritual needs, existing co-morbidities, intractable symptoms and complicated social issues exacerbated patient complexity. Poor communication was highlighted, particularly between generalists and specialists, although primary care professionals highlighted the potential of electronic care summaries. Generalists felt they lacked skill in identifying and caring for complex patients and time for professional development in palliative care.

Conclusion: Patient complexity is influenced by patient and environmental factors which are specific to each setting. Better communication between disciplines and a clear definition of complexity will improve the identification of patients for specialist palliative care.

Poster abstracts of the month - August

The SPPC Annual Conference in 2016 featured 36 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:

Responding 24/7: an evaluation of urgent admission requests to the hospice

Scottish research in non-cancer palliative care in the last decade

Standards for documentation of DNACPR decisions and discussions in a hospice setting - an inpatient audit

The ANP role within Specialist Palliative Care, how do our colleagues view it?

The Argyll and Bute Delivering Choice Programme: Development, implementation of palliative care service improvements in a remote and rural environment

Responding 24/7: an evaluation of urgent admission requests to the hospice


Carduff E, Downham E and Whyte G

Provision of 24/7 palliative care is a national priority. Hospices endeavour to respond to the palliative care needs of patients and families timeously, though resources are limited. This study aimed to evaluate urgent admission requests to the hospice, via the on-call doctor. Data on time of call; referrer and reason; whether the patient was known to the hospice; and details about the decision to admit were collected prospectively over three months.

There were 131 admissions to the hospice. Fifty-seven requests for urgent admission were recorded, the majority for symptom control (n=34). Thirty-eight (67%) were considered appropriate requests - patients with specialist palliative care needs that could not be met elsewhere. Twenty (53%) appropriate requests were admitted the same day, and 10 (26%) the following. Eight patients (21%) were not admitted because of bed or staff shortages; four were directed to the acute sector as an alternative place of care.

There is a need for direct access to a specialist palliative care doctor as this service is frequently used. Most urgent admission request were admitted within one day, suggesting a responsive service. Education for healthcare professionals is needed to ensure appropriate referral, enabling patients to achieve their preferred place of care.

Scottish research in non-cancer palliative care in the last decade


Finucane A, Kelly S and Murray S

Background: The need for palliative care, especially amongst patients with non-cancer diagnoses, is increasing as the population ages. Understanding research conducted in this field is crucial to develop early palliative care for all patients in need.

Objective: To gauge the scope of the research carried out in palliative care for non-cancer disease in Scotland over the last decade.

Method: 4 databases were searched to identify research carried out in palliative care on non-cancer disease within Scotland over the last decade. Study characteristics with regards to setting, sample, research methods and key findings were examined.

Results: 54 papers were identified. Findings focused on: (1) needs and care for specific non-cancer groups; (2) symptom management; (3) services and settings; (4) death and dying; (5)communication and education; (6) patient identification; and (7) spirituality. There was an upward trend in the studies conducted recently, the majority of which were qualitative.

Conclusion: A considerable body of Scottish research now exists in this area. Patients with a non-cancer diagnosis can potentially benefit from palliative care. Identification of patients for a palliative approach has improved, but further training for health care professionals and service redesign is required to reduce the inequalities that exist in identification across illness trajectories.

Standards for documentation of DNACPR decisions and discussions in a hospice setting - an inpatient audit


Spiller J and Yong X

Recent legal cases have clarified requirements for good practice around communication and documentation of Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions particularly where it is clear in advance that CPR will not work for a patient. UK good practice guidance for clinicians was updated in 2014 and further revised in 2016(1) to reflect the legal changes, and the NHS Scotland DNACPR integrated adult policy has also been reviewed.

The aim of this audit was to assess the documentation of DNACPR in a hospice setting in advance of the updated NHS Scotland policy release to highlight the areas where education should be targeted. The audit standards are based on the revised UK good practice guidance(1) and aspects of a measurement framework developed and piloted by Health Improvement Scotland as part of the deteriorating patient work strands.

This retrospective audit of 20 hospice inpatient notes happened over two weeks in July 2016. Compliance with 5 documentation standards was assessed for: individualised decision-making; correct DNACPR form completion; patient involvement; and good practice around incapacity. 16/20 inpatients already had a DNACPR form on admission. Compliance with good practice was excellent apart from documentation of a review timeframe on the form itself (40%).

(1) Decisions relating to CPR – guidance from the BMA, RCN and RC(UK) 1st revision of 3rd edition June 2016

The ANP role within Specialist Palliative Care, how do our colleagues view it?


Hamilton F and Tomison G

Cornhill Macmillan Centre integrates and enhances Specialist Palliative Care Services in Perth and Kinross, providing Day Care Services, Community Macmillan and Hospital Palliative Care Team support and a 10 bed in-patient unit. Two ANPs have worked within the medical team for seven years now and they wanted to discover colleagues’ views on the role. Staff Satisfaction Questionnaires were sent out across the service. The poster details the method, results and recommendations. The results were largely positive, providing ongoing continuity of clinical care for patients, enhancing communication between teams, however concerns raised re the ability to succession plan for these posts and the need to further explore the benefit of the role to patients and families.

The Argyll and Bute Delivering Choice Programme: Development, implementation of palliative care service improvements in a remote and rural environment


Brown H, Dryden J and Hekerem D

Introduction: Argyll and Bute is the fourth most access deprived area nationally, with 45.3% of the population living in areas classified as remote rural, compared to only 6.5% across Scotland as a whole.

Aim: The Marie Curie Delivering Choice Programme supported the development of high quality palliative and end of life care tailored to specific rural needs.

Results: The DCP delivered outcomes including improved palliative training for care home staff, new Palliative Care guidance and support for informal carers, guidance on remote and rural transport for patients, and community led events improving attitudes towards death and dying. In addition, a redesigned locally coordinated Marie Curie Nursing Service evidenced increased levels of care and improved patient outcomes.

Conclusions: The DCP successfully implemented local service improvements in Argyll and Bute targeted at identified gaps in service provision. Coordination and partnership with local agencies were key factors in the success of the projects and their sustainability, demonstrating that working together to deliver the right care and support at the right time can make all the difference.

Poster abstracts of the month - June

The SPPC Annual Conference in 2016 featured 36 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:

Making memories: Supportive care of an infant with a type IV laryngotracheoesophageal cleft


McCormack J, McDougall CM, McFadzean J, Montague ML and Smith P

The importance of palliative care in paediatric critical care, especially for patients with life-limiting conditions, is increasingly recognised. We will describe our supportive care of an infant with a lethal congenital malformation, which maintained stability for 3 months while clinical management decisions were made. This enabled his family to spend quality time with him and make invaluable memories.

A male term infant was diagnosed on day 6 of life with a type IVb laryngotracheoesophageal cleft. At 13 weeks, surgical repair was undertaken but, 2 weeks later, irreparable distal dehiscence was noted and care was withdrawn. Prior to surgery, he was maintained on nasal CPAP with periods off support as tolerated. He received regular chest physiotherapy. He was fed via orojejunal tube. A replogle tube was maintained on constant suction, with the tip in the distal oesophagus. An orogastric tube was kept on free drainage with regular aspiration. The patient was able to interact with his family, enjoy cuddles and baths, wear normal clothes and go out for walks both within and outside the hospital.

This case highlights the importance of promoting family-centred care and intentionally integrating palliative care into the paediatric intensive care unit.

Marie Curie Fife Hospice and Home Service


Heathfield H, Hekerem D, Hall L and Kieran N

Introduction: The pilot delivered tailored care and support at home for terminally ill people and their families. Locally coordinated support included nursing care, personal care, emotional support and practical information delivered by a team of registered nurses, healthcare assistants, health and personal care assistants and trained volunteers. An anticipated benefit was a changed pattern of use, reducing demand on acute services and increasing numbers of patients able to die at home.

Aim: The evaluation aimed to address patient and carer experience, quality and costs of the service.

Results: The evaluation evidenced improved quality outcomes for patients and a changed pattern of hospital use. Significantly fewer patients in the pilot group experienced a hospital admission (5.2%), compared to their matched controls (35.3%) with a shorter average stay in hospital (2.5 days less per admission) and more time in the community (15.8%). Furthermore, significantly more patients in the pilot group (96.1%) died at home, compared to matched controls (24.8%). The economic analysis showed a potential annual reduction in the costs of end of life care in Fife of £743,572.

Conclusion: The integrated service model demonstrates that investment in co-ordinated palliative care services delivers positive outcomes in quality of care and health economics.

No Decision About Me Without Me


Burton T, Keir S, Todd A and Visvanathan A

A summary of a number of tests of change aiming to improve the culture concerning patient inclusivity in anticipatory planning decisions in hospital care.

Nothing About Me Without Me - Involving People in Planning their Palliative Care


Andrew J and Gray E

Response to people with palliative care needs was ad hoc and person dependent resulting in an inequity of care across Dundee community settings.

Following money from the Dundee Integrated Care Fund a group of community staff ( nursing and social care) from a variety of agencies, carers and people with palliative care needs, developed person-centred response standards which would provide a more systematic response to people and their needs using the 5 ‘Must do with me principles’

A tool bundle was developed and tested using already recognised tools and triggers. This supported staff to identify, assess and produce an individualised care plan for that person and their carer.

A traffic light system was used to identify people needing either, intensive, intermediate or supportive care. Response times were agreed to ensure people with palliative care needs and their carers received timely visits and care could be planned according to their needs.

Staff have reported it is straightforward to use – and it is now spreading across NHS Tayside community settings.

People with palliative care needs and their carers report that they feel involved and listened to about their needs.

Project Evolution


Mearns J and Quinn C

This visually striking poster showcases the work carried out by the Renfrewshire Macmillan Palliative Care Project from Jan 2014 – Jan 2017. It highlights the evolution of the project through visual display from the infancy of the project through to the present day.

The poster describes through visual aids the development of the initial concept and how this was influenced by our engagement from both the general public and healthcare professionals. The findings from this engagement are summarised and displayed within the poster.

Our early work led to the creation of ‘About Me and My Care’ pack (a resource to support patients and carers co- ordinate their care), the Palliative Care Training Calendar (a resource to assist staff to find and access palliative care training) and the Electronic Concerns Checklist Resource (a resource for both healthcare professionals and patients to find support and information following an assessment using the patient centred concerns checklist).

This poster uses various methods to engage the viewers, ie text, pictures, charts and tables, wordle and includes a QR code to enable access to both the poster and our A4 information booklet electronically.

There is an A4 booklet which accompanies the poster highlighting more information on each of these components.

Poster abstracts of the month - May

The SPPC Annual Conference in 2016 featured 36 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:

Highland hospice - Reaching Out


Hamling K and Steele K

Highland Hospice has a proud history of delivering and promoting high quality palliative care for our community, geographically the size of Belgium with a population of just over 220,000.

We are currently piloting a number of innovative and creative responses to deal with these geographic and demographic challenges using digital communication, supporting more people to a higher standard at home or in a care home environment, increasing our value to the wider health and social care system and providing better quality care for those in need.

This outreaching of care includes:

ž- using ECHO Highland Hospice © - a collaborative web-based model of education and care management that moves knowledge without moving people

- HHeLP – Highland Hospice electronically Linking People © - an interactive, secure internet portal developed to provide patients receiving palliative care with support and information in their own home

ž- Helping Hands – a non-clinical volunteer support/ befriending service supporting patients and their families in the last year of life at home

ž collaborative working with care homes across all sectors to improve end of life care

ž- working with community services currently being redesigned to support and improve end of life care closer to home.

This poster presentation will report on all these projects in action.

How can a palliative care outcome measure be used in an acute care setting? An audit of the Integrated Palliative Outcome Scale (IPOS) in a Scottish teaching hospital


Buchanan D, Brabin E, Dickson S, Finlay M, Gaffney M, McFatter F, Paterson F and

Scott J

Background: The Integrated Palliative Outcome Scale (IPOS) has been developed to enable a streamlined, holistic approach to outcome measurement in palliative care patients. Practical experience of using IPOS in different care settings is required to develop understanding of its usability, acceptability and value for patients, relatives and staff.

Methods: A prospective audit of IPOS (3 Day Patient Version) was undertaken in a Scottish teaching hospital between November and December 2015. Consecutive referrals to the Team were considered for IPOS on first contact, after 3 days and prior to discharge.

Results: Of 68 patients screened (median age 70), 27 (40%) completed one IPOS and 7 (26%) completed two. Median Palliative Performance Scale (PPS) was lower and Palliative Prognostic Index (PPI) was higher in patients who did not complete IPOS versus those who did (PPS 40% versus 50%, PPI 6 versus 3.5). Problems reported most frequently as moderate, severe or overwhelming were family anxiety (85%), mobility (85%), pain (81%), weakness (78%) and patient anxiety (74%). 67% of patients reported ≥5 symptoms as moderate, severe or overwhelming.

Conclusion: IPOS facilitates a comprehensive holistic assessment and provides useful information about the range and severity of problems affecting patients referred to a HPCT. Patient frailty and staff resource are factors which may limit its repeatability in busy hospital wards. Population level data aggregation is required for IPOS scores to be benchmarked and contextualised.

How do palliative care specialists add value?


Mcmillan M

Aims: To test a tool that demonstrates the areas and complexity of care covered by a HPCT professional per patient visit.

Methods: Informed by a literature review a specialist intervention tool was developed. This scores activity within eight domains of care, commonly assessed and managed by HPCT, according to complexity. It also records the length and type of visit.

Over 4 weeks the tool was used to assess and score every patient intervention (assessment visit and resulting activity) carried out by the HPCT.

Results: In the study period 74 patients were reviewed and 277 interventions made.

60% of visits were multi-dimensional with 5 or more of the 8 domains of care assessed.

71% of interventions included assessment of patient priorities and discussions related to advanced care planning

25% of patients had very short but intense involvement from HPCT to achieve desired place of care: less than 4 visits but activity in all 8 domains.

Conclusion: The specialist intervention tool highlights areas where practitioners are adding value to patient care and where they are influencing patient outcomes. The domains of care are broad enough to be applicable to both hospital and community palliative care.

Informing practice: NHSScotland Palliative Care Guidelines 2016 Survey Results


Fearns N, Riches E and Winning A

The NHSScotland Palliative Care Guidelines website received over 109,000 visits between August 2015 and August 2016. The most frequently visited guidelines are: anticipatory prescribing, choosing and changing opioids, Fentanyl patches and syringe pump drug combination tables. To inform an approach to a potential update of the guidelines a national survey was issued during May 2016 and received 349 responses. 28.9% of responses came from palliative care specialists, 71.1% from non-specialists with the greatest proportion of respondents being community nurses (36.4%). 93.4% of all respondents agreed or strongly agreed that they used the guidelines to guide and inform treatment and/or care decisions for patients. Of the 101 palliative care specialists who responded 14.9% indicated that they were aware of new evidence or changes in practice impacting on use of the guidelines, such as changes in availability of medicines, new evidence on effectiveness of medicines and changes in terminology. Guidelines cited as requiring updates include: seizures, Alfentanil, care in the last days of life, vomiting and nausea and neuropathic pain. Suggestions for improvement include changes to the website layout and increased promotion of the guidelines. The survey results alongside website data will inform a potential series of guideline updates.

Lothian Care Assistant Development Programme - An education initiative


Cassidy L

With the Scottish Government’s integration of health and social care, social care teams are increasingly leading the care for clients and their families who are living with a terminal illness. Addressing the learning needs of social care workers is essential to ensure the provision of high quality palliative care for families’ in their preferred place of care, and to reduce emergency admissions to hospital where avoidable.

Care workers attended a single training day, with a portion going on to complete an online module. Care workers were supported in their care setting by a workplace mentor. Mentorship training and support was provided by the programme team.

500 social care workers will have completed the single day training and 75 will be completing the online professional development module by the conference date. Single day evaluation, pre and post knowledge and confidence questionnaire and focus groups are being used to evaluate the programme and its transferability.

To achieve the aims set out in the Strategic Framework for Action on Palliative and End of Life Care, it is essential that social care teams are adequately supported and trained to provide high quality palliative care for people and their families living with a terminal illness.

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