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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.

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

Author(s)

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

Author(s)

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

Author(s)

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

Author(s)

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)

Author(s)

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

Recommendations:

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.

Poster abstracts of the month: February

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:

Developing Documentation for End of Life Care

Author(s)

Farquharson J

Following the recommendations of the Neuberger Report1 on the use of the LCP and subsequent guidance from SG we developed a means of recording, evidencing and auditing end of life care (EOLC) which met requirements of the SG’s four principles.

Thirteen key objectives were agreed in relation to evidencing and auditing appropriate EOLC. These were translated into an End of Life Care Record (EoLCR).

The project comprised two stages:

Stage 1 (5 week pilot)

ž Ward A: Patients identified as being in the last days/hours of life, care documented in EoLCR

ž Ward B: Patients identified as being in the last days/hours of life, care documented in Personal Care Records (PCR).

ž All data compared against the 13 objectives

ž EoLCR rolled out to all wards.

Stage 2 (Retrospective Audit)

A retrospective audit was undertaken of all deaths within the hospice over 3 months of implementation

We aimed to develop a robust means of evidencing EOLC which followed SG’s 4 principles. This relates to NHS Scotland’s 2020 vision that care will be provided to the highest standards of quality and safety, with the person being centre of all decisions.

The retrospective audit showed improvements in recording EOLC.

Using the EoLCR allowed us to evidence the principles of good EOLC especially in relation to nutrition, hydration and communication with patients/ families.

Development of the Scottish Acute Palliative Care Clinical Nurse Specialist Forum

Author(s)

Ewan D

Hospital palliative care teams have developed inconsistently over the past few decades and differ in their structure and numbers of healthcare professionals involved. The main role of an acute hospital palliative care team is to work collaboratively with other healthcare clinical specialties in an advisory, supportive and educative capacity to improve care delivered to palliative patients and families. The clinical nurse specialist in palliative care provides the backbone to these services across Scotland but with increasing clinical workloads, the demands on other key dimensions of the service such as research/audit/quality and service improvement can suffer. The founder of the group wanted to heighten the work that hospital palliative care teams do and provide a forum for acute palliative care clinical nurse specialists to network, provide information and support and collaboration on joint initiatives for practice and service development for hospital palliative care services across Scotland. The group developed named the Scottish Acute Palliative Care Clinical Nurse Specialist Forum consists of 30 members from 10 health boards across Scotland. The aims, objectives and workplan for the group are displayed on the poster along with contact details.

Difficult conversations with families and patients about end of life care after stroke: what are the educational needs of health care professionals?

Author(s)

Bailey F et al

This poster shows the results of a survey monkey in to the training and educational needs around having difficult and sensitive conversations with patients and families after an acute stroke. The participants were asked 9 questions related to their experience of this difficult area of work and what they felt were the most important areas for improving their own practice in future. This was the basis for a new STARS (Stroke Training Awareness Resource) module which was published on line in January 2016.

Does a pre-visit phone call result in improvement?

Author(s)

Smyth S

An area for improvement suggested by the Care Inspectorate was to 'consider' an audit of medication procedures in the CHAS at Home (CaH) Teams. We have four CaH Teams, one based at Rachel House, Robin House, Inverness and Aberdeen. Audits were carried out in 2015 and 2016 looking at the reviewing of the medication chart at the Pre Visit Phone Call and then on the arrival at the house. The five audit questions were based upon standards set out in the Standard Operating Procedure for Checklists were introduced between round one and two looking at standardising the pre visit phone call, preparing for a visit an on arrival at a visit checks.

The focus of this poster is looking at one of the five questions, 'Was a pre-visit phone call made to the parent/ carer to confirm the visit and check for if there have been any changes to the medication prescription since CHAS's last contact with the family?' The child's prescription often will have been altered by our acute and community colleagues. The poster demonstrates the before and after results following the introduction of the checklists and the feedback we later received from the Care Inspectorate.


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: November

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:

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

Author(s)

Baird L and Spiller J

Prevalence studies show that 15-42% 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 even depression, and so the use of a screening tool could improve early identification and management of delirium and lead to improved outcomes. Patients admitted to the hospice are often frail and tired; therefore a quick and easy to use method of cognitive assessment is essential. A quality improvement approach was used to improve screening for delirium on admission to a hospice unit. The first cycle determined staff preference between the short CAM and the 4AT. Two further PDSA cycles embedded the 4AT (our 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 showed poor sustainability prompting improvements to staff education and changes to admission documentation. The QI approach highlighted the need to link staff awareness of their use of the screening tool with perceived improvements in treatment of delirium which prompted the creation and implementation of a delirium checklist in the unit, which details the management of delirium, common causes and suggested investigations.

02. Addressing the Great Taboo

Author(s)

Alexander H and Beuken G

This short session was designed to address the taboo of talking about death, dying and bereavement. Although it had not been tried before and there were concerns that some participants may be distressed by the content, the observation results show that this was not a big problem. Participant responses during the session show that the audience knew quite a lot about the topic. This is helpful for peer learning but also because the session was designed as a structured conversation to encourage people to discuss the subject more openly, some mentioned that they planned some actions as a result of attending e.g. making a will or discussing their own funeral wishes with their family. Feedback from the end of the session showed that most people found the session very interesting, although others had mixed reactions, saying it was also challenging. In total 81% of those present requested more training, which indicates a strong desire for more. Some degree of discomfort was expected, however, the session appears to have been very positively received by most participants. There was a small level of not unexpected upset, and a strong desire to learn more.

03. Aiming to achieve realistic bereavement care throughout Greater Glasgow and Clyde

Author(s)

Dolan J, McNeill K, McVey H, Miller J and Neeson E

Introduction: ‘How people die remains in the memory of those who live on’. Facilitating a good death can impact positively on grief and bereavement.

57% of deaths in Greater Glasgow and Clyde occur in acute hospitals, as health care professionals we are in a privileged position to strive for good deaths. Enabling practitioners to be open and equipped to talk about death, dying and bereavement reduces negative experiences.

Aim: To increase practitioners’ confidence and competence when dealing with death, dying and bereavement.

To raise awareness of resources and processes to improve the experience of those affected by death, dying and bereavement in all care settings

Methods: Following a theoretical palliative care module practitioners returned to improve practice through various projects (in ITU, paediatrics, acute surgical receiving , orthopaedics, ENT, tissue viability, respiratory and general medicine), aiming to improve the patients and relatives experience of death, dying and bereavement out with specialist palliative care environment

Projects included:

ž memory making in the form of hand prints, hair and jewellery in organza bags

ž brightest star bereavement boxes

ž death certification checklist

ž raising awareness of resources and processes

ž care after death boxes.

Next steps: Secure funding to embed projects in daily practice, continuing partnership working

04. Approaches to delivering palliative care in nursing care homes in the UK: a systematic scoping review

Author(s)

Finucane A, Hockley J and Kohli-Lynch N

The UK population is ageing with more elderly people living and dying in nursing care homes, making these important settings for palliative care interventions. Multimorbidity and dementia are common and many residents will have high symptom burden and complex care needs. A scoping review was undertaken to map palliative care interventions in nursing homes in the UK. This involved systematically searching six databases from January 2000 to February 2016. 17 articles were identified. These consisted of 7 evaluations studies, 7 descriptive or observational studies and 3 implementation studies. The studies focused on palliative care pathways, advance care planning, staffing issues and healthcare links across settings. The majority of studies were focused on staff views with few focussing on residents’ experiences. However overall there was a paucity of research on palliative care interventions in UK nursing homes. An increased emphasis on developing and evaluating palliative care interventions that are informed by the needs and preferences of resident’s and family’s experiences is recommended.


Poster Abstracts of the month: October

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

The Role of the Palliative Care Occupational Therapist in the Non-Pharmacological Management of Breathlessness

Author(s): Dorothy Clark; Yvonne Laing; Loretta Comer; Kristen Bryson; Claire Howie; Vicki Lawson; Marianne Macleod

Intractable breathlessness is a common, devastating symptom of advanced cancer causing distress and isolation for patients and families. It is estimated that the prevalence of breathlessness in all cancers is between 19-64%, as death approaches the prevalence rises to 60-80%. It occurs most commonly in lung cancer where it affects up to 75% of people with primary disease of the lung, bronchus and trachea.

The primary focus of Occupational Therapy is on enabling participation in everyday activities to the best of an individual’s ability, irrespective of health or illness.

This poster draws on the experience of the Palliative Occupational Therapy team who work in NHS Fife Acute services Division. It aims to illustrate the impact non-pharmacological management of breathlessness can have on one person’s ability to engage in everyday occupations.

The tide is turning.......

Author(s): Irene Stevens; Fiona Irvine

A collaborative approach to plan, develop and deliver a bespoke training package for Care Home staff to support a new pilot under the Integrated Care Fund Ideas and Innovation scheme, to provide an Enhanced End of Life Care service in a Care Home in NHS Ayrshire and Arran. The rationale for the service was to enable local residents with end of life care needs the opportunity to be cared for as close to home as possible when remaining in their own home was no longer a viable option. It was crucial that staff felt prepared and equipped to support this service hence the need for a robust training programme. Whilst the new service was the basis for the project the benefits were far greater. Participants experienced a wide range of teaching strategies and trained staff had an opportunity for experiential learning with specialist palliative care teams. Two members of the care home staff had previously undertaken a Macmillan funded education programme on palliative and end of life care and are supporting staff to transfer their skills from the classroom to clinical practice in the role of mentors. Undoubtedly, this will be beneficial for the longer term sustainability of the project.

Upskilling generalists in knowledge and skills in palliative care - a celebration of achievements

Author: Josaleen Connolly

The education project in palliative care started July 2011 and will end in October 2015. This project was funded by Macmillan Cancer Support and enabled each participant to undertake a level 9 module in Practical Palliative Care with University West of Scotland and a 5 day placement shadowing various members of specialist palliative care teams in hospital, the hospice and in the community. On completion of the education programme each participant was supported to undertake a small improvement within their own workplace that showed evidence of their new learning and experiences in palliative care being put into practice.

A total of 91 participants were recruited to the education programme and of these 83 people completed it; 71 people initiated small improvement projects related to palliative care and so far 51 of these have been finished.

As the project approaches its end in October, individuals have achievements to be celebrated but continued efforts are needed to update those involved and those who didn’t participate in the current knowledge and skills to care for those in need of palliative care. Therein lies the challenge for the future.

Volunteering: what does it mean to children's hospices?

Author: Dr Ros Scott

This poster reports on children’s hospice data from a research study exploring the influence and impact of volunteers on UK hospices.

Purpose: Using an innovative theoretical model of volunteering impact the purpose of the research was to explore the influence of:

  • Volunteers on key aspects of the service
  • The differing perceptions of different groups on volunteering and its meaning to the hospice.

Method: Three self-administered online questionnaires were developed, one each for trustees, senior staff and volunteers in UK independent hospices.

Findings: Findings indicated that volunteers were considered to be an integral part of the staff team and were seen as important, not only to the care of children and young people, but also to supporting families. Their contribution was inextricably linked with the financial success of the organisation and they were perceived to have a key role in helping to make children’s hospices more accessible. There was a clear commitment to further developing their involvement in the care and support of children, young people and their families.

Conclusions: Volunteers are in essential part of children’s hospices and their influence and impact is significant at all levels of the organisation.

What Key Elements will feature in the Ayrshire Hospice of the Future?

Author(s): Shona Hynd; Kirsty Cornwall

It is acknowledged that our current accommodation at Ayrshire Hospice will not adequately meet our needs and enhance the service we provide into the future. The poster summarises the first stage of an accommodation needs review currently ongoing at Ayrshire Hospice. A person-centred approach was adopted involving patients, families, paid and voluntary staff. The importance of correlating quantitative and qualitative data was recognised and a mixed methodology was adopted using questionnaires face to face interviews and a focus groups. Opinions were sought from in-patients, day services patients, community patients, family members, as well as paid and voluntary staff. The data reinforced the vision of a building that is easily accessible, iconic, welcoming, calming and uplifting. There was a resounding desire for enablement, choice and person centred care with patients controlling their own environment within a single or shared bed space. The next step in this project will be the appointment of a project management team, who will be tasked with providing a full options appraisal. The findings of this, together with the data already collated by the initial scoping stage, will inform the decision making process as to how the Ayrshire Hospice of the future will look and feel.

Winding Road to Enhance Patients Journey

Author: Morag Lyell

Overview of Macmillan funded TCAT project involving lung cancer patients who are for best supportive care. Highlighting aims of the project and quotes from patients prior to TCAT commencing It contains one photograph and 3 logo's and the remaining part is text.

 

Working Together to Promote Meaningful Connection, Hope and Job Satisfaction through the Namaste Care Programme (developed for people with advanced dementia)

Author: Lorna Reid

 

Situation: Despite the increasing incidence, challenge and cost of dementia care, questions remain about how to improve the quality of living and dying for people with end-stage dementia. In response, ACCORD Hospice has been involved in exploring the impact of Namaste Care™ since 2011.

Background: Namaste Care™ is an emerging multi-sensorial model of palliative care designed to improve the quality of life for people with advanced dementia. It has been demonstrated to: facilitate moments of meaningful connection and engagement between people with end stage dementia and others; promote hope among family members; and increase job satisfaction among care staff.

Assessment: As a result of Accords’ project work local interest in Namaste Care™ was high, but knowledge and understanding was low. Therefore an experiential course (with a placement opportunity) was developed by ACCORD Hospice.

Result: The first four day course was delivered in partnership between ACCORD Hospice, The Ayrshire Hospice and Adams House Care Home in 2014. This resulted in two further Namaste Care™ programmes being launched in care homes (with hospice support). Two more courses are planned over the next 12 months (with the support of Adams House in Renfrewshire and Abbotsford Care Home in Ayrshire). The projection for 2016 is: three new care home programmes to launch in Renfrewshire (with educational support from ACCORD Hospice) and two more programmes to launch in Ayrshire (with educational support from The Ayrshire Hospice). Ayrshire sites include a learning disability unit and a mental health care setting for people with dementia.

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