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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 - June

The SPPC Annual Conference in 2016 featured 36 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on:

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

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 At 13 weeks, surgical repair was undertaken but, 2 weeks later, irreparable distal dehiscence was noted and care was withdrawn.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.

Poster abstracts of the month - May

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:

Highland hospice - Reaching Out

Author(s)

Hamling K and Steele K

Highland Hospice has a proud history of delivering and promoting high quality palliative care for our community, geographically the size of Belgium with a population of just over 220,000.

We are currently piloting a number of innovative and creative responses to deal with these geographic and demographic challenges using digital communication, supporting more people to a higher standard at home or in a care home environment, increasing our value to the wider health and social care system and providing better quality care for those in need.

This outreaching of care includes:

ž- using ECHO Highland Hospice © - a collaborative web-based model of education and care management that moves knowledge without moving people

- HHeLP – Highland Hospice electronically Linking People © - an interactive, secure internet portal developed to provide patients receiving palliative care with support and information in their own home

ž- Helping Hands – a non-clinical volunteer support/ befriending service supporting patients and their families in the last year of life at home

ž collaborative working with care homes across all sectors to improve end of life care

ž- working with community services currently being redesigned to support and improve end of life care closer to home.

This poster presentation will report on all these projects in action.

How can a palliative care outcome measure be used in an acute care setting? An audit of the Integrated Palliative Outcome Scale (IPOS) in a Scottish teaching hospital

Author(s)

Buchanan D, Brabin E, Dickson S, Finlay M, Gaffney M, McFatter F, Paterson F and

Scott J

Background: The Integrated Palliative Outcome Scale (IPOS) has been developed to enable a streamlined, holistic approach to outcome measurement in palliative care patients. Practical experience of using IPOS in different care settings is required to develop understanding of its usability, acceptability and value for patients, relatives and staff.

Methods: A prospective audit of IPOS (3 Day Patient Version) was undertaken in a Scottish teaching hospital between November and December 2015. Consecutive referrals to the Team were considered for IPOS on first contact, after 3 days and prior to discharge.

Results: Of 68 patients screened (median age 70), 27 (40%) completed one IPOS and 7 (26%) completed two. Median Palliative Performance Scale (PPS) was lower and Palliative Prognostic Index (PPI) was higher in patients who did not complete IPOS versus those who did (PPS 40% versus 50%, PPI 6 versus 3.5). Problems reported most frequently as moderate, severe or overwhelming were family anxiety (85%), mobility (85%), pain (81%), weakness (78%) and patient anxiety (74%). 67% of patients reported ≥5 symptoms as moderate, severe or overwhelming.

Conclusion: IPOS facilitates a comprehensive holistic assessment and provides useful information about the range and severity of problems affecting patients referred to a HPCT. Patient frailty and staff resource are factors which may limit its repeatability in busy hospital wards. Population level data aggregation is required for IPOS scores to be benchmarked and contextualised.

How do palliative care specialists add value?

Author(s)

Mcmillan M

Aims: To test a tool that demonstrates the areas and complexity of care covered by a HPCT professional per patient visit.

Methods: Informed by a literature review a specialist intervention tool was developed. This scores activity within eight domains of care, commonly assessed and managed by HPCT, according to complexity. It also records the length and type of visit.

Over 4 weeks the tool was used to assess and score every patient intervention (assessment visit and resulting activity) carried out by the HPCT.

Results: In the study period 74 patients were reviewed and 277 interventions made.

60% of visits were multi-dimensional with 5 or more of the 8 domains of care assessed.

71% of interventions included assessment of patient priorities and discussions related to advanced care planning

25% of patients had very short but intense involvement from HPCT to achieve desired place of care: less than 4 visits but activity in all 8 domains.

Conclusion: The specialist intervention tool highlights areas where practitioners are adding value to patient care and where they are influencing patient outcomes. The domains of care are broad enough to be applicable to both hospital and community palliative care.

Informing practice: NHSScotland Palliative Care Guidelines 2016 Survey Results

Author(s)

Fearns N, Riches E and Winning A

The NHSScotland Palliative Care Guidelines website received over 109,000 visits between August 2015 and August 2016. The most frequently visited guidelines are: anticipatory prescribing, choosing and changing opioids, Fentanyl patches and syringe pump drug combination tables. To inform an approach to a potential update of the guidelines a national survey was issued during May 2016 and received 349 responses. 28.9% of responses came from palliative care specialists, 71.1% from non-specialists with the greatest proportion of respondents being community nurses (36.4%). 93.4% of all respondents agreed or strongly agreed that they used the guidelines to guide and inform treatment and/or care decisions for patients. Of the 101 palliative care specialists who responded 14.9% indicated that they were aware of new evidence or changes in practice impacting on use of the guidelines, such as changes in availability of medicines, new evidence on effectiveness of medicines and changes in terminology. Guidelines cited as requiring updates include: seizures, Alfentanil, care in the last days of life, vomiting and nausea and neuropathic pain. Suggestions for improvement include changes to the website layout and increased promotion of the guidelines. The survey results alongside website data will inform a potential series of guideline updates.

Lothian Care Assistant Development Programme - An education initiative

Author(s)

Cassidy L

With the Scottish Government’s integration of health and social care, social care teams are increasingly leading the care for clients and their families who are living with a terminal illness. Addressing the learning needs of social care workers is essential to ensure the provision of high quality palliative care for families’ in their preferred place of care, and to reduce emergency admissions to hospital where avoidable.

Care workers attended a single training day, with a portion going on to complete an online module. Care workers were supported in their care setting by a workplace mentor. Mentorship training and support was provided by the programme team.

500 social care workers will have completed the single day training and 75 will be completing the online professional development module by the conference date. Single day evaluation, pre and post knowledge and confidence questionnaire and focus groups are being used to evaluate the programme and its transferability.

To achieve the aims set out in the Strategic Framework for Action on Palliative and End of Life Care, it is essential that social care teams are adequately supported and trained to provide high quality palliative care for people and their families living with a terminal illness.

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. 
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