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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.

Strathcarron Hospice “Living Right up to the End” project

Talking about end of life – overcoming the barriers to community engagement.

Death, dying and bereavement are part of life, but are often seen as taboo in modern society and as a result, people miss opportunities to talk about and plan for the end of life. The Scottish Government recognised this in their Strategic Framework for Action for Palliative and End of Life care. A key outcome of the framework is that “People have opportunities to discuss and plan for future possible decline in health, preferably before a crisis occurs, and are supported to retain independence for as long as possible.”

In 2015 Strathcarron Hospice received funding from the Health and Social Care Alliance to find out what would help people to self-manage in the last year of their life so that they feel able to live well right up to the end. The Strathcarron Hospice Community Development Team set out to work with people living with long term conditions and their carers. Our aim was to find out from the people affected what would help them to live well through the challenges of declining health, and to work with them to develop community solutions.

We started by creating an asset map of the resources available in the project areas. This process revealed an array of community groups and activities which we had previously been unaware of.

Initially we identified the groups which had obvious relevance to people living with long term conditions. We approached these groups to ask them to participate in discussion. We encountered considerable reluctance to engage. The group leaders were protective of their members, making a decision on their behalf that the subject matter was too difficult.

Clearly a different approach was required.

We invested time and energy in making ourselves known and trusted in the communities. We attended third sector network events, community meetings, carers forum meetings, even a singing for memories group. We made friends and influenced people. At every opportunity we spoke about “LIVING right up to the End” and our genuine interest in hearing people’s views. We found that the Strathcarron brand was helpful as it was known and trusted, but also a hindrance because people had many misconceptions, and associated it with very end of life.

With the help of some key community players we managed to arrange events in local community venues. We provided tea and cake, and transport if required.

We asked ordinary people who had living or lived experience of the challenges of declining health about what was important to them as they approach the latter stages of life. We also asked them about the barriers to thinking about and planning for the future.

Once we had gained their trust we were overwhelmed by the willingness to share very personal experiences and thoughts.

We invited participants to join groups who would work with us over a period of 4 months to help us to really understand not only what the issues were, but also what they felt would help them. Over the 4 month period we witnessed something remarkable. The participation groups became safe places for discussion of sensitive and difficult subjects. The group supported, encouraged and respected each other.

Individuals who had initially been anxious about engaging with “the hospice” gave us feedback on the experience of being involved in the project.

One participant commented that she was often asked for feedback but had never previously felt her contribution was valuable.

Together we worked through the barriers to thinking about and planning for the future. The group felt that although they knew it was a good thing to do, they didn’t know where to start or what they should be planning for. Some had been given information by health professionals but they felt this was often given at the wrong time, or was in the wrong language. There was a strong feeling that they would not use the internet for “something as important as this” although they were happy to use it for other purposes.

The community development team gathered a large variety of materials and resources related to planning for the future, planning for end of life, and having the necessary but difficult conversations with loved ones about these plans. From these resources the participants agreed the ones which they felt would be most helpful to most people. Some participants liked the national ACP tool and were keen to use it, others felt it was “too formal, you would need professional help to fill that in.”

The resources identified were made available on “pop up information stands” which were provided at local GP surgeries. The group participants were keen to make it clear that there was no need for a professional at the pop up stands. The participants felt they were well placed to listen and respond to questions from the public.

Some of the group participants have become “ambassadors” in their local communities. They actively promote the importance of talking openly about death, dying and bereavement. They seek out venues for the information stand, and suggest changes to the materials provided in response to what they find works well.

The full report of the Living right up to the end project is available here: Living right up to the end report

Strathcarron Hospice community development team continues to explore new ways of supporting communities and individuals to manage the challenges faced in the latter stages of life.

For further information please contact Susan High, tel: 01324 826222

By Susan High, Community Development Co-ordinator, Strathcarron Hospice

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 - 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: January

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:

Bereavement Support in a Hospice Setting

Elliott J, Jackson S and Taylor M

Bereavement can be a difficult process for people however evidence suggests that sharing experiences and feelings can help to lessen the effects on individuals. It is also known that people can struggle to access the right support at the right time following bereavement. Hospices are at the sharp end of caring for people who are dying and offering support to their families is a fundamental part of specialist palliative care. The patient and family support team at Accord Hospice consists of trained counsellors and volunteer bereavement support workers who proactively offer bereavement support and try to do so in innovative ways to meet the varying degrees of need of bereaved families within the local community. These services are offered both within Accord and off site at our outreach facility.

User experience feedback has been collected over the past 12 months. Collated results would appear to show there is definitive value to offering timely, appropriate and varied bereavement services from a skilled hospice based team. Many of the comments received from people would reinforce the evidence that suggests that support can lessen the effects of bereavement.

Children's Palliative Care in Scotland: the role of the Diana Children's Nurses

Harley D, Porter C, Reid F and Rodger E

Children's Hospice Association Scotland has employed three Diana Children's Nurses (DCNs) since 2014. They are financed through the treasury from funds set up by the government to commemorate the life and work of Diana Princess of Wales. The overarching aims of the roles are given in generic terms, encompassing strategic service development, direct and indirect clinical care, and staff training / support. The three individual roles, DCN West, East and North, focus on the specific remits of oncology and paediatric intensive care, neonates, and the community. They work within, and alongside, the NHS and other statutory and voluntary sectors to support babies, children, and young people (BCYP) with palliative care needs and their families across Scotland. This may be from the point of diagnosis or recognition, at any point through the journey, to end of life and bereavement. Their roles exemplify a holistic approach that recognises all the environments in which BCYP live their lives. More realistic choices for families can be better enabled through exploring changes to practice, whilst developing systems, skills and resources.

CNS model for identifying level of support/intervention needed for care homes

Barker L, Gardner H, Milton L and Stevenson B

Background: Continued support from palliative care specialists is recognised as a way to assist the sustained adoption of new systems and palliative care principles in care homes. (2, 3) Hospice community teams are well placed to support care homes to improve planning and delivery of palliative care. The community palliative nurse specialist team support 28 care homes by providing support to develop processes for identifying deterioration or dying, regular review of palliative care needs, education and specialist advice for individual residents.

Aim: This intervention builds on two previous projects aimed at increasing care home staff knowledge of palliative care practice and procedures, and how they can link together with other palliative care providers’.

Description: The challenges encountered especially with care home staff engagement influenced the importance of shaping any interventions to suit the needs of the individual care home.

An individual Care Home Profile and Algorithm (flowchart) was developed to assist the CNS to determine and agree, with the manager, a Level of CNS Intervention most appropriate and achievable for the individual care home.

Effects of Intervention: Issues such as staff turnover, engagement, and lack of GP resources are an on-going challenge when trying to change palliative care practice and procedures in care homes. Utilising the Care Home Profile and identifying a Level of Intervention has helped the CNS and manager to focus on the priorities for education and change in practice for each care home. Using this model has helped CNS to set achievable goals of intervention and therefore ensure their skills and times are being used appropriately.

Complex Communication Needs: Nursing the patient with Motor Neurone Disease

Alexander J and Kerr F

Case study of a hospice patient combined with a literature review to:

  • establish what communication difficulties can be experienced by nursing staff caring for a patient with MND
  • identify ways in which nurses can improve their knowledge of Augmentative and Alternative Communication (AAC) to better care for this patient group
  • identify assessment tools which can assisted with achieving the most appropriate AAC. 

Poster Abstracts of the Month: June

The SPPC Annual Conference in 2015 featured 38 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:


Macmillan Rural Palliative Care Pharmacist Practitioner Project (MRPP): Phase


Author(s) NHS Highland/Macmillan Team: Alison MacRobbie; Gill Harrington

University of Strathclyde Team: Professor Marion Bennie; Dr Gazala Akram; Emma Dunlop; Dr Rosemary Newham

In 2012, NHS Highland aimed to explore a new service model piloting the development of a full-time Macmillan Rural Palliative Care Pharmacist Practitioner (MRPP). The aims were to develop community pharmacy to support the needs of palliative patients, improve service provision, develop training and peer support opportunities and provide quality information to support practice. Phase 1 explored service gaps and key issues and has previously been published.

Phase 2 aimed to investigate new areas of service, develop evidence-based resources for healthcare professionals and patients, and provide a set of recommendations upon which the service could be developed further. A mixed case study approach was used for evaluation and results were summarised under two key areas; ‘Education, Training and Awareness’ and ‘Integration of the MRPP in the Multi-Professional Team’. Within these areas were included development of a series of training resources, ‘Sunny Sessions’ for Care Home Staff, and mouse mats and mugs containing palliative care prescribing information for healthcare professionals. There was enhanced pharmaceutical presence at multidisciplinary meetings and access to patient medicine information.

For NHS Scotland the evidence from this project presents a clinical practice model for community pharmacy palliative care services in rural areas in line with existing key health policy.

'No decision about me without me’

Author(s): A Todd; A Pringle; S Keir

Introduction: Ensuring patients have as much input as they wish into their care is a fundamental aspect of good medical practice and as such the Department of Health advocates shared-decision making (ISBN: 13:9780101788120). Recent legal rulings highlight the willingness of the public to hold health services to account should they fail in this regard ([2014] EWCA Civ 822).

Aims: To evaluate the introduction of an anticipatory care plan (ACP) form on both the degree of shared decision-making with multi-morbid patients and their families, and the speed at which on-call teams could access this information for timely treatment decisions.

Methods: Via small tests of change, an ACP form was designed that documented four key decisions concerning response to deterioration (figure 1). Central to the form was a box recording date of discussion with the patient or next-of-kin. We measured the frequency of shared decision-making before and after the introduction of the ACP form.

Results: Shared decision-making increased. The time to find all key information significantly reduced informing appropriate response to deterioration.

Conclusion: The introduction of an ACP form encouraged shared decision making and facilitated out-of-hour assessments. The presence of the form provided a forcing function that triggered more discussions.

‘No specialist and no out of hours service!’ – Audit and experience of end of life care in a rural Australian hospital

Author(s): Natasha Freeman

Palliative care provision in Kempsey Hospital consists of a specialist nurse consultancy service, no inpatient or community beds, no afterhours or weekend support and no specialist physician cover. Local GP’s estimate 40% of palliative care patients require end of life care in hospital. We audited end of life care standards for inpatients and surveyed staff opinions on current end of life care practice.

Our patients ranged from 35 – 85 years, and 8% were Indigenous Australians. We showed that less than half of patients had a complete physical assessment of symptoms, had anticipatory medications prescribed and had spiritual needs addressed. Nearly 70% of nurses believed a new end of life care pathway was required and 85% requested more education and support in palliative care practice.

A redesigned end of life care pathway is being introduced to improve standards not currently being met. Our findings highlight the need for developing innovative educational programmes on end of life care for rural nurses, and video conferencing is being explored as a means of delivery. In response to the current lack of specialist service in Kempsey, locally designed and tailored educational programmes are being developed aimed at strengthening current hospital and community expertise.

Patient and family experiences of DNACPR discussions: an integrative review of the literature

Author(s): Dr CC Hall; Dr E Carduff; J Lugton; Dr J Spiller

The aim of this review is to identify patient and family views on the communication of DNACPR decisions based on their experiences of DNACPR discussions. A literature search of multiple databases was performed for (adult) patients, from all countries over the last 10 years. 559 abstracts were identified. After coding and exclusions were applied, 46 relevant full texts were included (9 UK, 37 rest of world). Cultural variations were considered and recurring themes were tabulated.

Themes revealed the importance of DNACPR discussions being held by someone trusted and the importance of family/ carer involvement, as well as perceived concerns about burdening family members. Timing of discussions revealed the difficulty of finding the ‘right time’ to discuss DNACPR. For certain patients earlier is preferable (e.g. in elderly patients while cognition is good) where as cancer patients prefer not to discuss DNACPR close to diagnosis or starting treatment.

Discussions held at home or at the GP surgery were preferable to discussions held during acute admissions to hospital. Content of discussion highlighted the importance of discussing prognosis and quality of life with patients. Also that patients find discussing DNACPR in the context of a wider discussion around treatment escalation options acceptable.

Person Centred Care at the End of Life: Developing a care plan for End of Life Care in a hospice setting

Author(s): Kim Donaldson; Vicky Hill; Duncan Brown

Recognising dying, and caring for people at end of life, is often challenging, uncertain and emotive for all involved1. Striving to ‘get it right’ when you only have one chance is a fundamental attribute of professionals.

Having successfully used the Liverpool Care Pathway (LCP) to guide the care offered to dying people and their families, St Columba’s Hospice (SCH) appreciated the importance of taking a considered approach in moving forward after the LCP planned phase out in 2014.

A working group critically reviewed the literature and undertook a rigorous consultation with clinical staff, non-clinical staff, volunteers, patients and families to elicit views on what mattered most at the end of life. An openness from colleagues across Lothian to share their work and review the work of SCH was invaluable.

This poster illustrates the development, implementation and initial evaluation of the SCH Person Centred Care at the End of Life document.

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