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

Posted by Site administrator on March 29 2018 at 11:28

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

Posted by Site administrator on September 29 2017 at 11:06

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

Posted by Rebecca Patterson on September 29 2017 at 11:00

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

Author(s)

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

Author(s)

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

Author(s)

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

Author(s)

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

Posted by Site administrator on August 14 2017 at 13:45

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

Author(s)

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

Author(s)

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

Author(s)

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?

Author(s)

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

Author(s)

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

Posted by Rebecca Patterson on June 22 2017 at 17:22

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

Author(s)

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

Author(s)

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

Author(s)

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

Author(s)

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

Author(s)

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.

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