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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.

New research study aims to better support cancer patients with terminal illness

The University of Chester has been awarded funding by Macmillan Cancer Support for a new research study, to develop a psychological support intervention for cancer patients who have been referred into palliative care services.

A team of researchers at the University of Chester and the University of Edinburgh have been awarded a £34,000 grant for the collaborative project, which will be run in partnership with terminal illness charity Marie Curie.

The funding will enable Acceptance and Commitment Therapy (ACT) based psychological therapy sessions to be delivered to people with cancer who are transitioning into specialist palliative care services. The shift from curative to palliative treatment can be accompanied by high levels of psychological distress and poor quality of life. The intervention being developed as part of this study is called BEACHeS which stands for Brief Engagement and Acceptance Coaching in Community and Hospice Settings.

Previous research led by the University of Chester has already shown that ACT may help cancer survivors to become more resilient to suffering and psychological distress. This pilot work aims to extend that research to patients receiving palliative care.

ACT is a psychological therapy that aims to help people to get the most out of their lives, whatever their circumstances. As such the research team think this will be a complementary approach to mainstream palliative care. The pilot study began in March 2018 and will run for a year. Participants (patients at Marie Curie Hospice Edinburgh and Marie Curie Hospice Liverpool) will have one-to-one therapy sessions with a psychologist over a six-week period and the researchers will test whether this short intervention has improved their psychological wellbeing. The research team hope that this will lead to a future trial and larger programme of work researching the benefits of ACT for people with cancer and other life-limiting conditions.

Photo: The BEACHeS Study Steering Group (left to right): Sue Millington, Jenny Strachan, David Gillanders, Brooke Swash, Juliet Spiller, Anne Finucane and Nick Hulbert-Williams.

Poster abstracts of the month

The SPPC Annual Conference in 2017 featured 46 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:



01. A quality improvement approach to cognitive assessment on hospice admission: could we use the 4AT or Short CAM?


Dr Lucy Baird; Dr Juliet Spiller

Prevalence studies show that 13-42% of patients admitted to specialist palliative care inpatient units have delirium. Symptoms of delirium are often subtle and easily missed, or misdiagnosed as fatigue or depression, and so the use of a screening tool could improve early identification and management of delirium and lead to improved outcomes. A quality improvement (QI) approach was used to improve screening for delirium on admission to a hospice unit. A baseline measure was taken of the rate of performance of cognitive assessment on admission. Five PDSA cycles were then undertaken. The first cycle determined staff preference between two cognitive assessment methods: the Short CAM and the 4AT. Two further PDSA cycles embedded the 4AT (the preferred tool) into the admission process, establishing it as a usable tool in the hospice setting for up to 92% of admissions. A subsequent cycle showing poor sustainability prompted staff education and changes to admission documentation, resulting in an increase in cognitive assessment being performed, from 50% to 76%. The QI approach highlighted the need to link staff awareness of their use of the screening tool with perceived improvements in the treatment of delirium, which prompted the creation and implementation of a ‘Delirium Checklist’.

02. A very expensive sticking plaster?


Dr Sheonad Laidlaw; Dr Maire O’Riordan; Carolyn Mackay

From September 2015 – September 2016 the use of Lidocaine 5% plasters totalled 14% of Marie Curie Glasgow drug expenditure despite limited evidence on benefit in palliative care patients.

A retrospective analysis of in-patient case notes for October 2016 was undertaken. The primary aims of this analysis were: to better understand the number of patients using Lidocaine 5% plasters; to understand the rationale for prescribing this treatment and whether it is in line with current evidence and recommendations; and to reduce our total spend on a treatment of doubtful benefit.

50% patients admitted on this treatment were prescribed them appropriately as guided by Scottish Palliative Care Guidelines. 4 x patients had their treatment initiated by us inappropriately for musculoskeletal pain. 83% of patients were using 1 plaster daily, 17% using 2 daily (totally 98 plasters a week at a cost of £235.50).

We are currently assessing patient benefit at 48-hours and 1 week post admission/ initiation, and trialling a 24-hr patch free period if the pain is shown to respond to the plaster; by doing so we aim to ensure that Lidocaine plasters are only prescribed if of proven benefit and that expenditure is reduced where there is no patient benefit.

03. Accessing Advanced Care Plans: what's in a Key Information Summary (KIS)?


Dr Lucy Baird; Dr Jennifer A. Harrison

78% of people are admitted to hospital in their last year of life and 89% of those who die in hospital are admitted as an emergency. They often have an Anticipatory Care Plan, documented by GPs in the Key Information Summary (KIS). This can include invaluable information, but utilisation remains poor in the acute hospital setting. We aimed to find out more about the information contained in KISs and improve use of the KIS in the Acute Receiving Unit (ARU) at the Western General Hospital in Edinburgh using Quality Improvement methodology. We collected data from 20 patients/month (August ‘16 to July ‘17) admitted through ARU who had a KIS. We documented what information each KIS contained, whether we judged it to be useful and if there was any record of it being utilised in the first 24 hours following admission. A staff survey was performed which looked at KIS awareness. Following departmental teaching and poster display, data collection continued to track any improvement. KIS utilisation improved marginally, from 8% to 13%, with our interventions, but overall remained poor. Information most and least likely to be included in KISs was information related to chronic diseases and patient decisions respectively.

04. Adult and Children's Palliative Care Services Working Together to Transform Transitions through Trust and Innovation


Liz Smith; Fiona Wylie; Jayne Grant

There is growing evidence of the increased number of young adults (YA) living with life limiting conditions in Scotland. In response to this the Prince and Princess of Wales Hospice (PPWH) recognised they have a role to play in supporting YA and their family transition from paediatric to adult hospice services.

To support the above there was a need to ensure that the staff had the appropriate knowledge, skills and competence to support YA and their families.

Recognising a gap in these areas the hospice sought potential support and collaboration with Children’s Hospice Across Scotland (CHAS).The developed project aimed to support PPWH staff deliver a high standard of care to YA by addressing their learning needs through joint workshops and staff secondments to CHAS. This work supported building trust and establishing relationships between the children and adult hospice. Pre and post secondment evaluation, feedback and reflection is a key aspect of this work informing and developing the YA hospice service model.

To date this collaboration has been shown to be an effective way of influencing and managing change, building staff skills and confidence positively impacting on the patient and family experience

05. An Evaluation of the Lothian Palliative Care Redesign Programme


Niall Kieran; Helen Highley

Background: An independent evaluation of a collaborative programme initiative to review the local delivery of palliative care and delivery of a whole systems improvement.

Aim: The programme aimed to identify local palliative care need, working with local stakeholders to invest in identified improvement areas.

Methods: Qualitative interviews with stakeholders, individual project reports and quantitative data relating to hospital usage allowed for significant sources of evaluative data. In combining sources of data, the evaluation sought to measure both the practical impact, and the Strategic Added Value of strong partnership working

Results: A total of 8 projects were funded through the programme, with results from each project including:

ž an increase in potential number of patients identified as palliative

ž in excess of 500 social care workers receiving palliative care training

ž new model of working in Marie Curie Hospice Edinburgh

ž increased awareness raising for palliative care

ž improved experiences for employed carers

ž increase in the amount of time patients spent in their own homes and a reduction in deaths in hospital

ž befriending service launched for patients and families.

Conclusion: The investment in the programme allowed a culture of change to develop in local palliative care. In doing so, staff have benefited from increased palliative care knowledge, whilst ultimately patients now have improved outcomes and experiences.

06. An Innovative Approach To Community Nursing


Margaret O'Donnell

Introduction: Community palliative CNS, Margaret O’Donnell, identified many patients who were referred were in crisis with little understanding of their condition/ medications / and how to manage symptoms. To meet the needs of these patients an early intervention pilot was established

Aim: The overall aim of this pilot was to offer early intervention in symptom management and psychological support, for patients diagnosed with life limiting conditions by providing early access to specialist palliative care. The hope was that this would reduce the episodes of crisis noted by GPs and district nurses, and help to support patients and their families

Method: A seven month pilot was initiated, GP’s were asked to refer patients with life limiting illness to an outreach clinic held in the local health centre. Qualitative and quantitative audit was undertaken post pilot period. Activity at the clinic was monitored – patient referrals and outcomes, feedback regarding the care experience was sought from patients who attended the outreach clinic, healthcare professionals were asked for feedback regarding their experience of this service.

Results: Total referrals received/reason for referral/duration of care/patient outcome continuing care of patients from the pilot/other hospice services utilised

Feedback from patients and healthcare professions on their experience.

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 - 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 - April

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:

Electronic key information summaries allow timely documentation of patients’ wishes out of hours


Finucane A, Hall C, Leiva A, Lunan C, McCutcheon H, McLoughlin P, Murray S, Rhee J, Spiller J, and Tapsfield J

Introduction: Electronic Key Information Summaries (KIS) are shared electronic patient records widely used throughout Scotland (Tapsfield et al. 2016). These allow selected parts of the GP patient record to be routinely shared with healthcare professionals across settings. The KIS may contain vital information to support out of hours palliative care decision-making, such as patient preferences for place of care, DNAPCR status and anticipatory medicines.

Aim: To identify when different information pertinent to out-of-hours palliative care decision-making was serially recorded within the KIS for patients who died with cancer, organ failure or frailty and/or dementia.

Method: A retrospective review of the primary care notes of deceased patients across nine general practices in Lothian was conducted in 2014.

Results: We analysed 605 patient notes. A KIS was shared for patients with organ failure 22 weeks before death (Mdn=22, IQR=10-31), and for those with frailty and/or dementia, 20 weeks before death (Mdn=20, IQR=8-34). For patients with cancer, KIS’s were commenced later (Mdn=14, IQR= 6-27). Information on anticipatory medicines was shared two weeks before death (Mdn=2, IQR=1-6).

Conclusion: Electronic key information summaries facilitate the timely documentation and sharing of patient information that is vital to support out of hours decision-making and prevent inappropriate hospital admissions.

End of life care in the digital age


Jayne E

Outline of Sue Ryder's Online Community and Support for people who are dying, their families and people who are bereaved:

ž the need for such a 24/7 support (current lack of consistent co-ordinated support and advice overnight and at weekends)

ž why it was established (to meet this unfulfilled need and extend Sue Ryder's services beyond physical locations of palliative services)

ž how it works (community for people receiving end of life care, their families and people who have been bereaved to share experiences and provide peer-to-peer support, supported by bereavement counsellors; an advice section on practical issues such as will-writing through to coping when someone is dying)

ž what impact it has had on people's lives in its first year (figures on users, qualitative feedback)

ž relevance to Health and Social Care Partnerships (new responsibility for provision of palliative care could include services like this or signpost to services like this).

Evaluation of an Anticipatory Care planning tool for care home residents and their families


Boyd K, Gardner H, Highet G, Hockley J, MacKay A and McCutcheon H

The poster describes the methodology findings and conclusion of a primary care quality improvement project which evaluated the efficacy and acceptability of a tool (ACQ) being used to facilitate anticipatory care planning in two contrasting care homes in Edinburgh. An audit of acute clinical events was combined with an interview study involving 27 relatives, care home staff, and local GPs. Interviews were recorded, transcribed and analysed thematically. A focus group of 30 out-of-hours GPs discussed linked case vignettes. The project found that clear plans, recorded electronically and informed by the ACQ, ensured most acute clinical events were handled appropriately. The system was most vulnerable when protocol driven decisions were made by out of hours NHS services. The study concluded that anticipatory care planning should start before care home admission and be a coordinated, ongoing care process tailored to individual needs and embedded in the routine procedures of care homes. Further work to develop family and staff information using a patient public involvement approach is now underway.

Gleniffer Outreach Information and Support Centre as a Palliative Care Community Resource


Crawford A and Simpson H

Gleniffer Outreach Information and Support Centre is a Palliative Care Community Resource.

Our current Gleniffer Outreach facility relocated and opened in 2012 within the grounds of the Royal Alexandra Hospital in Paisley, a location that has proven significantly beneficial.

Our aim was to provide a facility where patients, carers, Health / Social professionals and the general public could drop in or telephone for advice, guidance or be signposted to more suited services relating to any aspect of malignant or non-malignant palliative care need(s).

The centre also provides an alternative location to the hospice, as it was reported that some individuals had difficulty with attending / returning to our hospice, especially for post bereavement support and counselling.

Initially we did not know that we were developing a public health approach to palliative care. However this transpired by encouraging a compassionate and resilient community approach, increasing public awareness around death and dying, offering practical support, networking with other local services, whilst furthering volunteer involvement.

HHeLP - Highland Hospice Electronically Linking People (in the Highlands)


Greenhalgh J, Keen J and Ravi G

Background: The Inverness based Highland Hospice, provides a 10 bed in-patient service, Day Therapy service, telephone advice for HCPs, outpatients, domiciliary visits and a Bereavement Counselling Service to adults with advancing life-limiting disease living in the NHS Highlands area.

The number of patients supported is the equivalent of 18% of the 2,500 people in this catchment area who die every year. HHeLP could quadruple the reach of current support.

Method: People are recruited from contact through any of the Hospice services and the primary care team is informed - as Virtual Hospice aims to complement existing care of primary care teams giving greater confidence to patients and carers in their ability to cope at home.

Individualised/prescribed resources are uploaded onto the portal and patient and carer are shown how to access and use. The portal enables secure messaging accessible by the team around the clock.

Recruitment: The pilot has recruited approximately 20 users from across Highlands.

Results: Early results have highlighted some interesting learning points


ž Increase range of resources

ž Introduce carers to the system with resources to help them in their caring role.

ž Training of volunteers to give IT support locally to patients/carers who struggle with the electronic access.

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