Sharing Current Scottish Practice

Author(s) Libby Sampey, Dr Juliet Spiller, Dr Anne Finucane

Background: KIS, an electronic palliative care coordination system, enables unscheduledhealthcare providers access to key clinical information to guide care out of hours. This project aims to determine whether KIS is complete for appropriate patients and how it alters over time.

Methods: This was a service evaluation reviewing patient case notes, including KIS documentation at referral and one-month post-referral. Additionally, semi-structured interviews with Palliative Community Nurse Specialists (CNSs) explored KIS usefulness.

Results: 77% of patients had a KIS at referral. One-month post-referral, all had a KIS and 59% contained updates. At referral, 53% of KISs stated there was an anticipatory care plan (ACP) in place, 50% specified a DNACPR decision and 24% noted preferred place of care or death. Carer details were available in 29% of KISs. CNSs find ACP the most useful aspect of KIS and proposed more ACP detail in updates. One recommendation suggested to improve this was allowing CNS access to update KIS.

Conclusion: The majority of new referrals to palliative services had a KIS at referral and all rereviewed had one at one-month post-referral. Areas of potential development include improving KIS accessibility for CNSs and putting in place future systems allowing CNSs to edit KIS.

Song writing for grief and loss: An intergenerational project between hospice patients and primary school children

Author(s) Giorgos Tsiris, Donna Hastings, Becky Chaddock, Stephen Fischbacher, Margaret McLarty

In 2019, as part of its expanding community engagement and health promotion work, the Arts and the Family Support services of St Columba’s Hospice implemented an innovative project raising death and dying awareness.

This project, which was co-led by St Columba’s Hospice and Fischy Music, took the form of an intergenerational song writing project. Hospice patients and children from Victoria Primary School were brought together to explore, express and share through music their experiences of grief, change and loss in life. Their collaborative work was subsequently shared with the public through recordings of the songs and live performances which attracted public and media attention. The project also included training for all school staff and school-wide workshops raising awareness and equipping people with the resources to cope creatively with loss change and grief in life. In this poster we outline some key processes and outcomes of the project alongside illustrative materials such as photos and direct quotes by the participants. Looking ahead, we also consider the implications of the project and discuss future developments. This includes the role of hospices as a resource hub for the local community fostering partnerships and opportunities for open dialogue and creative action around death, dying, change and loss.

SPARC – Supportive and Palliative Action Register in the Community

Author(s) Dr Melanie Sloan, Susanne Gray, Vicki Cloney, Dr Katie Clark

A previous partnership with Macmillan Cancer Support aimed to redesign community based palliative care in Renfrewshire. This led to the testing of SPARC - Supportive and Palliative Action Register in the Community. Key outputs included developing:

• weekly MDT meetings (WISeR)
• a social prescribing model for individuals with a palliative condition whose support needs are stable.

This led to a year-long partnership with Healthcare Improvement Scotland to test ways to more effectively identify people who would feed into these services.

A key shift in thinking was to establish a way to identify people who would benefit from the social prescribing arm of the SPARC approach. This led to the development of a ‘new’ GP question to identify people much earlier. The old ‘surprise question’ is still helpful for identifying people approaching the end of their life; however, our aim is to facilitate early palliative care.

Through our work with GP practices it was apparent that there are a wide variety of approaches to managing palliative care registers and meetings. Therefore, we have developed a new ‘SPARC’ register format that supports both identification and discussion of these individuals. The register can be shared with other practices should they wish to use it.

SPOT - The Safer Prescription of Opioids Tool Deployment in Clinical Practice

Author(s) Roger Flint, Geraldine Finnan, Annabel Howell

The Chief Medical Officer for Scotland invited all clinicians to innovate and disseminate innovation throughout the NHS.

The Safer Prescription of Opioids Tool, SPOT, is a novel software medical device designed to improve the safety of opioid conversion in Palliative and End-of-life care in all settings and for all prescribers.

It was developed over the course of five years with a multi-professional and interdisciplinary team. SPOT’s initial release version is complete and it is undergoing adoption and roll-out Board-wide in NHS Borders.

This poster outlines the key steps and activities required to disseminate and foster adoption of an innovative software medical device throughout an NHS Health Board in Scotland. It identifies the key barriers to adoption and the methods and mechanisms to overcome these blocks. This process includes stakeholder engagement, project planning and initiation and a communications and dissemination plan to spread SPOT throughout the NHS Board, leading to the adoption of the innovation in the Health Board.

This spread and sustainability framework was used to inform the process and learning from this pilot and could be used to encourage and spread the dissemination of other innovative tools in NHS Health Boards (Healthcare Improvement Scotland 2013).

The Truacanta Project – Helping Each Other with Death, Dying, Loss and Care

Author(s) Caroline Gibb, Mark Hazelwood, Rebecca Patterson

The Truacanta Project will support local communities across Scotland who are interested in taking community action to improve people’s experiences of death, dying, loss and care. It is a three year initiative being run by Scottish Partnership for Palliative Care and funded by Macmillan Cancer Support.

Communities have an important role to play in supporting people through the difficult times associated with ill health, dying, loss and care, but in many ways, have become ill-equipped to provide this supportive role. The international compassionate communities movement shows an appetite for change; in Scotland there are many individuals and groups keen to find ways to enhance compassion in their own communities, who bring with them skills or experiences that have the potential to be hugely beneficial.

Using a community development approach, The Truacanta Project aims to mobilise these assets - the strengths, knowledge, experience, skills and resources that already exist - to nurture compassionate communities in Scotland.

This poster will help delegates understand the background to and aims of The Truacanta Project, what we mean by a community development approach, and the vision for how the project and participating communities will develop.

Tracing Autonomy: a reflective approach in support of autonomy in life

Author(s) Dr Ben Colburn, Jeni Pearson, Kirsty Stansfield

Tracing Autonomy is a collaboration between the Art Team at PPWH and Philosopher Dr Ben Colburn, University of Glasgow & End of Life Studies Research Group. Tracing Autonomy offers a systematic way of reflecting on practice that is appropriate, efficient and focussed.

It offers a 4-step process that can be tailored and adapted to practice and in relation to the patient. It is not a form to fill in but instead offers a reflective framework for thinking about how to support a patient’s autonomy in life and to identify what might undermine the autonomy of a patient.

This poster will describe the framework, including its use of an expanded holistic terrain. The terrain takes into account the physical, psychological, social and spiritual aspects of a person’s life. It also considers the environment, quality of dialogue and sensory experiences that a person may have. We will present the four characteristics of autonomy (choice, value, relationships and authorship) that can be used to identify and understand what has undermined or supported a person’s autonomy. This reflective process allows the practitioner to engage in meaningful and purposeful dialogue with the individual and begin working towards alternatives and in some cases the ideal.

Welcoming the public to St. Columba’s Hospice on Edinburgh Doors Open Day

Author(s) Danuta Orlowska, Karen Filsell, Giorgos Tsiris, Suzie Stark, Maggie Young

Doors Open Day is one of Edinburgh’s popular free days out when members of the public can explore some of the city’s fascinating buildings. Though our doors are open throughout the year, taking part in Doors Open Day is an opportunity to locate our community engagement work within a city-wide event. Participation enables us to share our vision and values in a relaxed and informal way. As well as seeing our buildings and interior design, visitors can talk to staff and volunteers and find out about what we offer: services for patients (inpatient, day therapies and community), opportunities for supporting the hospice (working and volunteering in a variety of ways) and the education and research in which we are involved.

The poster presents information about our participation in Edinburgh Doors Open Day

• planning behind the scenes
• selected highlights of our participation
• some of the feedback we have received.

Participation in Edinburgh Doors Open Day is now an established part of our calendar and we look forward to welcoming visitors on Saturday 28 September 2019 (11.00 – 15.00).

Author(s) Jane Niblo, Sandra Campbell

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

Author(s) Morag Muir, Leigh Deas, Maura Edwards

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

Author(s) Dr Natalie Smee National Services Scotland, Dr Morag Campbell NHS Greater Glasgow and Clyde, Dr Mike Winter National Services Scotland

The Scottish Government is committed to support the development and provision of specialist paediatric palliative care services. Integral within, but not exclusive to, is the provision of end-of-life care to the 2,200 patients per year who become unstable and deteriorate towards the end of their natural lives (200 will die), and to the additional annual 200 deaths out-with paediatric palliative care. The provision of end-of-life care is of inviolable importance as experiences shape the child’s legacy and the family’s grief, yet accessibility family choices and service delivery are not equitable. Without a transparent nationally adopted strategy drawn by the shared vision of all committed multi-disciplinary stakeholders, a cacophony of diverse inconsistent practices will prevail. National Services Scotland has launched 'PELiCaN' - the paediatric end-of-life care network - commissioned to improve the national provision of 'family-integrated, personalised, realistic care' to all families whose child is approaching the end of their natural life, regardless of age, ethnicity or geographical location.

Although embryonic, the intention is to facilitate regional roadshows to understand contemporary practices (excellence and deficits) and opinions, followed by a national launch event. The overarching multi-disciplinary steering group will collaborate with existing networks and organisations, and establish informative work-streams (data analysis; structural; operational; educational; miscellaneous - national ethics committee, organ donation). The aim is to ensure equality and improve the burdensome experience of all families facing such a devastating loss by offering deliverable choices that meet the autonomous individualised wishes of the families.

Author(s) Jenny Doig Developing potential palliative care educators

Palliative care educators are `rare beasties` who either work as part of a generalist team or a small hospice education team. A large part of the palliative care educator`s role involves collaborating and networking with hospices, universities and specialist colleagues. Thus, opportunities for clinical staff to experience this role, prior to appointment, are limited. In August 2018 NHS Lothian Clinical Education and Training staff were offered a development opportunity in palliative and end of life care education.

Aim: To enable staff to gain an in-depth perspective of palliative and end of life care education by shadowing the Macmillan Cancer and Palliative Care Educator, half a day a week for a 3-month period. 7 staff applied and were selected to shadow. Each participant set their own palliative and end of life care learning objectives. Participants met regularly to discuss their objectives with the post incumbent, conducted a literature search, were introduced to palliative care networks, met with relevant clinical staff, and presented a reflective account of their learning The qualitative results of the first three placements will be presented.

Author(s) Ros Scott, Anne Goossensen, Sheila Payne, Leena Pelttari

It is often others, rather than volunteers, who describe their activities and experiences. Led by the EAPC Task Force in Volunteering, this project aimed to enable volunteers to tell, in their own words, their personal experiences and what it means to them to volunteer in HPC.

Aims:

The aims were to understand: 

Method:

Task Force members in seven countries were asked to invite five volunteers to write about their volunteering activities and experiences in their own language. Two prompt questions were given to volunteers: “What do you do as a volunteer?” “What does it mean to you?” Stories were translated into English and a qualitative framework used for analysis.

Results: 

Conclusion: The narratives gave an insight into personal stories of volunteers in different countries and highlighted many similarities in shared experiences and values. Understanding these perspectives can help HPC organisations to improve how volunteer skills may best be utilised and supported.

Author(s) Katy Paterson, Jacquie Smith

“Learn from yesterday, live for today, hope for tomorrow” ~ Albert Einstein

The poster will be an illustrative presentation of a six month evaluation of the lived experience of 15 patients who attended Edwina Bradley Day Hospice with a focus of improving symptom burden and functional status. Included will be qualitative and quantitative data presenting the efficacy of patient engagement and participation, the creative approach of a multidisciplinary team and the supportive model nurturing participans to reflect on the past in order to move forward.

Author(s) Jayne Grant, Danielle Harley

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

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

Author(s)

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

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

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

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

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

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

Author(s)

Jan Dobie, Jade Cantwell, Leslie Chapman, Sheila Shaw

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

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

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

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

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

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

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

Author(s)

Amy McNeil

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

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

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

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

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

Author(s)

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

Background:

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

Using Playlist for Life³ has:

Enabled life story telling and reminiscing

Supported the management of breathlessness and anxiety

Increased sense of wellbeing

Supported Advanced Care Planning

Been a legacy for family members.

Our next steps are to:

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

Establish referral criteria.

Outcome:

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

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

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

³Playlist for Life. 2019. https://www.playlistforlife.org.uk/