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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: January

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:

Establishing a Culture of Improvement in a Scottish Hospice

Sime C; Milligan S; Bett P; McConnell S; Pyper C; Mills A; Rooney K

The Scottish Government’s 2020 Vision for healthcare in Scotland is to provide safe, high quality care, whatever the setting. National quality improvement programmes have been developed to deliver these ambitions, resulting in an upwelling of improvement activity across NHS Scotland.

However, the spread of improvement methodologies through the Scottish hospice sector has been considerably less dramatic. Indeed, there appears to be relatively little uptake of improvement as a specific model for achieving quality and effectiveness, in spite of its adoption elsewhere.

Ardgowan Hospice has committed itself to utilising the model of improvement in order to continuously address the safety, effectiveness and person-centredness of its services. A Continuous Improvement Team was created to facilitate improvement projects, in conjunction with the creation of two new posts within the organisation to support data management and improvement activity. Key areas identified for improvement were referral pathways into the hospice, and referral-to-bed times. This is a joint project with the University of West of Scotland. Internal improvement projects are establishing and embedding the ‘what matters to you’ model; a quality of sleep study and the introduction of outcome measures, including the Integrated Palliative Outcome Scale (iPOS) and carers assessment tool.

Goals of Care within a Structured Response Tool

Sarah Gossner; Gordon Mills; Tracy Burton

A project has been undertaken to design and test a Structured Response Tool (SRT) to support the recognition and escalation of, and response to deteriorating patients in acute care in NHS Lothian. Its development was driven by a combination of the National Point of Care Priorities (Scottish Government 2013; HIS 2013) and local findings from the Deteriorating Patient Collaborative and the Advance Nurse Practitioner (ANP) scoping project.

Throughout the local Deteriorating Patient Collaborative there has been a focus on anticipatory care planning within Goals of Care.

In addition to this the Information Reconciliation project has informed the development of the SRT to support the clinical teams to ensure a bespoke Structured Response is achieved for all deteriorating patients.

There has been multi-disciplinary acknowledgement that a SRT can support the recognition and appropriate response to deterioration. This presentation will discuss the impact of the SRT on the consideration of Goals of Care and inclusion of previous ACP for patients who may be at risk of further deterioration and dying. Moving forward we will assess whether the SRT acts as a forcing function to improved engagement with patients and families.

How Palliative care nurses make meaning of loss and death when delivering end of life care to patients and their families

Geraldine Finnan

If palliative and end of life care is to be delivered in an effective manner then understanding of patient’s needs, improved education and training for health care providers and more resources are required (NHSScotland 2014). The nurse as an individual with personal attitudes, beliefs and values must also be considered. According to Peters et al (2013) following their literature review of death anxiety faced by nurses, in the course of their care delivery many nurses face death and dying patients and their attitude to death is made up of a complex combination of past and present experiences, cultural, societal and philosophical views. A study conducted by Gerow et al ( 2010 ) found that nurses experience grief for their patients in a very different manner to that experienced by family members .The need to remain strong and offer support on one hand whilst managing their own emotions following the death of a patient with whom they may have formed a connection can be very difficult and Remen (2006) states that

‘The expectation that we can be immersed in suffering and loss daily and not be touched by it is as unrealistic as expecting to be able to walk through water without getting wet’.

Implementation of a Falls Prevention and Management programme in a Hospice In-Patient unit

Jean Gow (Specialist Physiotherapist in Palliative care); Elaine McManus (Practice Educator)

Evidencing Best Practice and Documentation

Falls prevention and management is a key aspect of patient safety and an important quality indicator. This can be challenging in a specialist palliative care setting where the pace of decline and fluctuating levels of independence is a common feature. The aim of care is to deliver safe professional practice whilst promoting patient choice, independence and dignity.

Aim: To evidence best practice

Method: Based on the latest guidance from National Institute of Excellence we developed 1) a falls risk-assessment tool; 2) a care plan for falls prevention and management and 3) ten quality standards.

A practice focused approach was used to engage staff in the importance of the guidance and the use of the tools pre and post implementation. The tools were integrated into the e-Health recording system (Crosscare) and compliance with the standards were audited one year after implementation (February 2015).

Results: The audit identified good compliance against the standards and also identified areas for improvement.

Next steps: Devolve ownership of programme to IPU nursing staff; explore best practice in managing specific risk factors ie delirium/cognitive deficits using a person-centred approach; link the process to outcomes.

Implementing the adapted ‘6 steps’ approach – An end of life care project for local care homes

Jackie Higgins; Margaret Ramsay

Background and Aims: This collaborative project was funded by Falkirk, Stirling and Clackmannanshire Change Fund ‘Reshaping Care For Older People’ The overall aim was to design, develop and deliver a palliative care/end of life care education package targeted at nursing and local authority care homes in Forth Valley. This project focused on supporting organisational change and the development of staff knowledge and skills related to EOL care.

Project Outline: This innovative project involved classroom teaching and ongoing support from the project’s Palliative Care Facilitator (PCF) within the participants care home setting. This approach supported transfer of learning from the classroom to the workplace. Participants were also encouraged to complete a project related to end of life care.

Evaluation: Participants completed pre and post participation questionnaires to demonstrate impact of learning and individual self-confidence ratings related to specific end of life domains.

Results: Participants demonstrated increased confidence related to communication about end of life issues with residents, families and other health care professionals. Participants also identified areas where they could implement change.

Discussion: This project enabled staff to increase their confidence in talking about and planning for end of life care within their care homes. The PCF supported participants to put their learning into practice and undertake changes in practice within their own settings.

Poster abstracts of the month: December

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:

Art and Hospice Care - Building a Strategic Relationship

Avoiding Harm at the End of Life: How good are we?

Beer Mat Chat – Love, Loss and Lager

Community Referrals : ensuring an appropriate and timely response through the use of a telephone triage tool

Don't forget about me: Developing a person centred approach to caring for people with dementia with a hospice setting

Art and Hospice Care - Building a Strategic Relationship

Author(s): Dr Erna Haraldsdottir; Lesley Christie

Background: Art Strategy was developed in a hospice, in collaboration with an artist organisation and with funding from Creative Scotland.

The process of writing the strategy:

  • Five months consultation period with the hospice staff, volunteers and patients, artists, cultural organisation and potential funders.
  • A number of workshops and consultation approaches with staff patients and volunteers.
  • Short art based workshops for patients.
  • Implementation of the Art Strategy:
  • The strategy proposes a programme of activities that will offer appropriate therapeutic engagement for patients, families and staff as well as bringing in the wider community into the hospice building and grounds.
  • Eleven proposed projects have been identified within the themes of:
  • oSensitive spaces, exhibition spaces, partnership residence projects, the social programme, staff project, research project and emergent artist mentoring scheme.

What we will achieve with the strategy:

  • Permanent public art elements for sensitive spaces enhancing a therapeutic environment
  • Space within the hospice exhibiting patients’ and artists’ work
  • Event programme attracting the public into the hospice.
  • Therapeutic art as part of hospice activities for staff, patients and families.
  • Long term partnership with arts organisations and link with the local professional creative community.

Avoiding Harm at the End of Life: How good are we?

Author(s): P Brooks Young; S Keir et al

Aim: When someone is dying, there is no room for less than perfect care for the person involved and their family. It is critical that staff have the knowledge-base and skills to reliably deliver high-standard person-centred care. Within a larger piece of work supporting the delivery of key aspects of palliative care, we wanted create a system that would enable us to know how well we were achieving this.

Methodology: A tool was developed across 11 in-patient areas to define four key process indicators of high quality end of life care: communication, symptom management, essential care and review. This was implemented across the Medicine of the Elderly department. Five sets of case notes are randomly selected and reviewed each month.

Results: Case note review took less than 10 minutes each. This was aided by the introduction of a new care-rounding document that incorporated key aspects of essential care. Review data was used at the well attended multi-professional morbidity & Mortality (M&M) meeting to remind all members of the team of key aspects of care and to support continuous quality improvement.

Conclusion: This tool provides a route to assure our delivery of palliative and end of life care It also provides a way of monitoring the impact of other quality improvement measures being tested including patient / family experience.

Beer Mat Chat – Love, Loss and Lager

Author(s): Mark A Hazelwood; Rebecca M Patterson

Background: Storytelling/remembrance can the reduce isolation of recently (and less recently) bereaved people, and strengthen community resilience [1]. Traditional rituals and approaches which supported storytelling/remembrance are declining in Scotland. Pubs are hubs of social interaction and storytelling, especially for men.

Aim: To explore the acceptability of beer mats in pubs as a prompt to storytelling and remembrance of people who have died, and to promote To Absent Friends, a peoples’ festival of storytelling and remembrance.

Method: Five mats were designed – each had a carefully selected quotation or piece of trivia relating to loss or remembrance, plus a weblink to www.toabsentfriends.org.uk 20,000 mats were made available to order.

Feedback regarding acceptability was elicited through conversation with bar tenders, direct observation and a questionnaire dispatched with some orders. A press release was issued.

Results: The mats were generally viewed as being acceptable. A local brewer distributed c 15,000 mats to pubs across Edinburgh. The main Edinburgh newspaper ran a prominent article about the mats, the To Absent Friends Festival and the value of greater openness about death and dying.

Conclusion: Beer mats appear to be an acceptable way of introducing reflection on loss, grief and mortality into pubs. More research is needed to establish the effectiveness of the mats in prompting storytelling and remembrance.

Community Referrals : ensuring an appropriate and timely response through the use of a telephone triage tool

Author(s): Milton L; Barker L

Background: The Marie Curie community palliative care teams in Edinburgh and West Lothian receive over 800 new referrals per year. Crucial for any service is the process around the screening of referrals; important both in clinical terms and to ensure efficiency of the service.

Method: The teams in Edinburgh and West Lothian developed a new approach to respond to referrals, with a triage telephone call being made to the patient by an experienced clinical nurse specialist to assess:

  • the appropriateness of the referral,
  • the urgency and complexity of the patient’s situation,
  • which location would be appropriate for the first assessment.

Results: Referrals to the service over a six month period were analysed (n=406). 7% of referrals were assessed as not being appropriate (n=28). The triage process identified the complexity, urgency and condition of the remaining 378 patients; 55% of patients were seen within 5 days. 10% of patients were seen as an out-patient in the hospice; 90% were seen at home.

Conclusions: Telephone triage is an effective method of determining the appropriateness of referral and location for the first assessment, allowing care to be prioritised. It also demonstrated the team offer a responsive service to complex and urgent patients.

Don't forget about me: Developing a person centred approach to caring for people with dementia with a hospice setting

Author(s): Kim Donaldson; Fiona Cruickshank

The number and care of people living with dementia is of growing global concern. Predications suggest that in Scotland the numbers will have doubled by 2031. As palliative care strives to care for all, regardless of diagnosis, culture or background there is a need for hospices to meet the challenge of caring for those living with and dying from dementia.

St Columba’s Hospice set up a working group with the aim to develop a person centred care plan for patients with dementia and/or other cognitive impairment. The care plan guides professionals to consider how to best communicate with the person, the impact the environment has upon them, meaningful activities, tools to support symptom management and liaising with external professions. The use of the care plan in practice has been supported by additional information resources and education. An initial informal evaluation has taken place and adaptations made.

This poster aims to illustrate the development of a care plan to support professionals to make all interactions with people living with dementia meaningful.

Poster abstracts of the month: November

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:

A collaborative approach to embedding Anticipatory Care Planning as core business

Author(s) Patricia Brooks Young; Tracy Burton; Sarah Gossner

Recent work within NHS Lothian has reinforced the need for effective Anticipatory Care Planning (ACP) and reliable communication to facilitate quality person-centred care for the high proportion of patients across settings who are at risk of deterioration and dying. The concept of Information Reconciliation is used to illustrate the need for clear documentation of a multi-professional Goals of Care plan and sharing of information across care settings with key opportunities for sensitive discussions and review of these plans throughout.

A breakthrough series collaborative is underway to implement a Deteriorating Patient Change package across in-patient areas to optimise the recognition and management of deterioration and enable reliable, bespoke structured review and response.

In alignment with this collaborative, a forum has been formed to bring together key stakeholders who are undertaking Quality Improvement initiatives linked to Information Reconciliation/ACP within a range of specialties and settings.

This forum has senior leadership and aims to share learning, provide support, discuss barriers and opportunities and importantly optimise the impact of related interventions on care outcomes for patients and families.

This presentation will discuss projects from member teams and illustrate the impact of the collaborative approach on improvements in ACP across our system.

A Quality Improvement Journey in Palliative Care: Reliable person-centred care through Information Reconciliation

Author(s)Patricia Brooks Young; Tracy Burton

Recent research identified that 29% of patients in hospitals are at risk of deterioration and dying. The need to improve anticipatory care planning (ACP) for such patients require innovative and system wide approaches.

Aim: To ensure patients in pilot areas receive care aligned to their needs and wishes through integration across settings.

Methods: Innovative quality improvement approaches are used to explore the current system and test changes regarding:

  • identification of patients at risk and reliable response
  • communication with patients and families regarding realistic goals and treatment options, benefits/burdens of interventions, their wishes and concerns
  • integration of ACP within routine clinical processes
  • clear documentation of a multi-professional Goals of Care plan and sharing of information across care settings: information reconciliation.

Initial outcomes: Findings from pilot areas indicate that ACP is appropriate for over 75% of patients, therefore is core business for clinicians. This presentation will include the impact of interventions on care processes and outcomes including acceptability of ACP approaches.

Additional output:

  • Exploration of a core skill set for staff
  • Glossary of terminology to enable a consistent approach.
  • Collaboration to expedite progress.
  • Testing of quality improvement approaches in palliative care.

Acupuncture in Palliative Care-What’s the Point?

Author(s)Suzanne Young

Acupuncture is increasingly being used in palliative care to treat a variety of symptoms. Although trials for acupuncture are difficult, there is a growing evidence base for the use of acupuncture to treat symptoms such as pain, fatigue, dyspnoea, anxiety and sweats.

The Hospital Palliative Care Team in St John’s Hospital has recently started offering acupuncture to both in-patients and community patients in West Lothian. This innovative nursing initiative is proving highly successful.

Anticipatory care planning in a rural setting is improved by addition to the GP palliative care register

Sarah Bowers (medical student); Eileen Hillis (Macmillan Nurse Specialist); Bill Shennan (GP)

Background: The palliative care team on this Scottish island consists of GPs, district nurses and a full-time Macmillan Nurse Specialist. Most palliative care referrals to the Macmillan nurse are via mainland clinics. Patients are added to the GP palliative care register through discussion with the multidisciplinary team. Anticipatory care plans can be initiated by the Macmillan nurse or GP practice.

Aim: The project assessed anticipatory care planning (ACP) for palliative care patients via a search on Docman and Vision of current palliative patients.

Results: 16 patients were identified by the Macmillan nurse as palliative and thus in need of addition to the GP palliative care register – 7 of these were on the register. Of the 16 palliative patients: 2 were for resuscitation and 4 had a DNACPR. Furthermore, 9 had a preferred place of care and 8 had a preferred place of death. These proportions increased in patients on the GP register.

Discussion: Patients on the GP palliative care register had increased rates of ACP for patients thus demonstrating a need for all patients currently deemed palliative to be registered. This allows for better planning for services and shared communication amongst the multidisciplinary team.

Poster Abstracts of the Month: September

The SPPC Annual Conference in 2014 featured 40 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:

Using an Outcome Measure in a Palliative Day Care Unit

Author(s) of poster: Joyce McNaught, Elaine Blair, Mairi Ann Higgins, Susan Jackson

Palliative day care can play an important role for people who are living with a chronic, life limiting illness by providing opportunities for social interaction, reducing social isolation and also promoting a sense of control. In today's climate of clinical governance and scrutiny it is vital for staff within Day Therapy Units (DTU) to be able to demonstrate the value of their service. Outcome measures are one such way of achieving this however within palliative care can pose significant challenges due to the declining function of the patients that confuse the apparent efficacy of the interventions. The Therapy Outcome Measure (TOM), a validated tool which allows therapists and nurses to describe the abilities and difficulties of patients in the domains of impairment, activity, participation and wellbeing to monitor changes of time was introduced within DTU at Accord Hospice. A retrospective review of 16 patient case notes was carried out to determine whether the tool was indeed an effective way of measuring outcomes and whether it influenced staff when making decisions about discharge. It also allowed staff to review their processes and documentation.

Volunteer support to improve well-being for patients and carers

Author(s) of poster: Susan High, Anne Marie Toland

Background: It has been observed that carers experience a level of illness or disability which is more than twice the level of the general public (Carers Scotland 2011).There is also evidence that early intervention offering emotional/practical support to carers at end of life improves confidence and resilience, supporting preferred place of care. (Princess Royal Trust for Carers/Crossroads 2011). Method Volunteers were recruited via Volunteer Action North Lanarkshire, existing hospice volunteers and local media. Training was given in befriending, boundaries and self-care. Ongoing training included communication skills, moving/handling, relaxation techniques, dementia friendliness, supporting reminiscing. Results 134 referrals were assessed by CNS. Support provided included information about other services, complementary therapy, befriending and short carer respite. The most frequently provided support was complementary therapy. Many accessed a combination of services 31 volunteers were trained in first 6 months. Feedback from service users and volunteers has been very positive. ‘It makes me feel I want to go out – I can relax for a few hours’ ‘My volunteer befriender takes away my fears – I feel like part of society again’ Discussion Evaluation is ongoing but this model provides a sustainable means of supporting carers which is transferable to other geographical locations.

Volunteers - vital to hospice viability

Author(s) of poster: Ros Scott, Richard Carling, Jean Hindmarch

Background: Volunteers play a significant role in hospice and palliative care enabling services to offer a wider range of care and support to more people with life-limiting conditions. This poster summarises the findings from a research study that explored the relationship between volunteering and independent hospice sustainability in the UK.

The purpose of the study was to:

• explore the influence of volunteers on four key organisational sustainability factors in UK hospices

•gain an insight into how volunteering is understood by senior staff, volunteers and trustees;

•consider the relationship between volunteering and independent hospice sustainability.

Methods: Data was gathered using a self-administered online questionnaire from trustees, senior staff and volunteers from a total of 32 adult and children’s hospices.

Findings: Findings indicate that volunteers:

•are central to the variety and quality of services delivered

•are important to patient care and family support

•help to reduce taboos around death, dying and bereavement

• make services viable.

Conclusion: Hospices should recognise the strategic significance of and their dependence on volunteering in planning for the future. As a key component of the workforce hospices should also consider the sustainability of their voluntary service, including the role of trustees.

Widening Access to Services for Children of Palliative Patients

Author(s) of poster: Julie Marshall

We looked at widening access to services for children and young people affected by the life-limiting condition of someone close to them. Current services available in Ayrshire and Arran and hospices (including Ayrshire) in Scotland and England were scoped. There were consultations with teaching staff from 12 primary schools and small informal consultations with bereaved parents and children. Joint fundraising and education pack was designed in consultation with teachers in order to start engaging with school communities and create deliberate funding streams to provide the service. A study day explored the needs of bereaved children. As a result of this a Children & Young Person’s Service has been set up and piloted. The service provides: 1:1 support for primary aged children upwards to 16 Family work when children are under primary age Group work Information and advice to any family affected by any illness or death, regardless of the circumstances Advice, guidance and support to other agencies and professionals The service has also contributed to the public health promotion that being more open about death and dying leads to better mental health (www.goodlifedeathgrief.org.uk) evidencing that professional knowledge in supporting the needs of this particular group of children has increased.

Poster abstracts of the month: August

The SPPC Annual Conference in 2014 featured 40 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 an Occupational Therapist and Physiotherapist with a Hospital Palliative Care Team: An Impact Assessment

The Role of the Social Worker in Palliative Care

The Use, Effectiveness and Acceptability of Telemedicine Interventions in the Provision of Palliative Care in Rural Populations

This Is Me

Understanding the barriers to identifying carers of people with supportive and palliative care needs in primary care

The Role of an Occupational Therapist and Physiotherapist with a Hospital Palliative Care Team: An Impact Assessment

Author(s) of poster: Rosemary Cairns, Michelle Lennox, Lesley Goodman

Funded from Macmillan Cancer Support, this is a three-year project looking at the addition of an Occupational Therapist (OT) and Physiotherapist (PT) to an already established hospital palliative care team of nurses, doctor, social worker, pharmacist and complementary therapist. Inspiration for the project came from complex patient discharges. The team wanted to explore what difference there would be by having an OT and PT educated specifically to a specialist palliative care approach. Both the OT and PT brought a wealth of knowledge and experience to the service and in turn they have gained an enormous amount. For example enhanced communication skills to enable advance care planning discussions, the ethos of thinking ahead and recognising the individual needs of patients to a specialist level. A key role is to liaise with generalist OTs and PTs and provide advice to support palliative care patients. Both the OT and PT are now studying towards the Graduate Certificate in Palliative Care.

The Role of the Social Worker in Palliative Care

Author(s) of poster: Kirstie Barke, Social Worker, University Hospital Ayr; Josaleen Connolly, Macmillan Project Lead, NHS Ayrshire and Arran

Social workers operate within a multi-disciplinary team and assess individuals care needs and where possible offer practical solutions. Social workers operate within the local community and the hospital setting however they are not trained in specialist palliative care. I have undertaken a distance learning degree module with the University of the West of Scotland – Practical Palliative Care. This module gave me an opportunity to increase my knowledge in palliative care and provided me with 5 days shadowing various members of specialist palliative care teams in the hospice, hospital and the community. My experiences of this programme have included learning more about the importance of communication between different disciplines and that palliative care is not only applicable in the care of patients with a malignant disease diagnosis. I have increased my knowledge and understanding of recognising when palliative care can be of benefit in advanced diseases as well in the management of common symptoms including pain. I have gained insight into the advantages of advance care planning and I also have a better understanding of bereavement services and the services and support that are available.

The Use, Effectiveness and Acceptability of Telemedicine Interventions in the Provision of Palliative Care in Rural Populations

Author(s) of poster: Zoe McQueen, Anne Finucane, Claudia Pagliari

Inequalities in the provision of palliative care have been well-documented between urban and rural populations, with rural areas experiencing poorer accessibility to specialist services. With increasing prevalence of chronic conditions, this disparity will only increase, and it is, therefore, essential to find methods which will enhance available resources. Telemedicine has been a proposed solution. The aims of this systematic review were to identify the use of telemedicine interventions within palliative care in rural settings, assess their effectiveness, and identify provider and user acceptability, to then inform and guide service development in Scotland. An electronic search of MEDLINE, EMBASE, PsychINFO and CINAHL was performed. A total of 3112 papers were identified and 16 papers were included in this review. A range of telemedicine applications have been found to be effective and acceptable and there appears to be a perceived need for telemedicine across palliative rural communities in Scotland. However, there is lack of evidence besides users’ subjective perceptions. Future research needs to move from qualitative, descriptive studies to clinical trials in order to assess the effectiveness of these interventions. To optimise their use, the needs of the targeted populations must be assessed and each specific intervention tailored accordingly.

This Is Me

Author(s) of poster: Stirling, I., Baird, L., Campbell, S., Carmichael, L., Cassidy, M., Follett, M., Irvine, F

Critical reflection on two MND case studies highlights how communication difficulties threaten the quality of care. Further reflection and a review of the literature by the multidisciplinary team emphasises the need of a person-centred document, ‘This Is Me’; which enhances the scope and depth of communication between patients, their families and the multidisciplinary team from the time of initial diagnosis through to end of life care. The ‘This Is Me’ document is developed, and piloted across all areas of the organisation to enable timely conversations to take place, key information to be shared, improve collaboration in decision-making, create solid foundations for care plans and offer person-centred care.

Results: On-going evaluation, using both questionnaires and interviews, so far indicates the positive benefits of ‘This Is Me’ as a communicative tool throughout the illness trajectory. It is being used in the community, in day services and in the In-Patient Unit.

Conclusion: The ‘This Is Me’ project is enhancing the depth of communication between patients, their families and the multidisciplinary team within the Ayrshire Hospice. ‘This is Me’ allows staff, patients and carers to enjoy timely conversations, share key information, improve collaboration, create solid and offer person-centred care.

Understanding the barriers to identifying carers of people with supportive and palliative care needs in primary care

Author(s) of poster: Emma Carduff, Anne Finucane, Marilyn Kendall, Alison Jarvis, Nadine Harrison, Jane Greenacre, Scott Murray

Background: Caring for someone at the end of life can be physically and emotionally demanding. Carers are often ambivalent about their own needs and are reluctant to self-identify as a caregiver in need of support.

Aims: To explore the barriers to, and strategies for, identifying carers of people at the end of life in primary care, and to understand why carers do not self-identify. Methods Literature review, synthesis of data from previous research, and focus groups with carers and health professionals.

Results:

1.Transition into the caring role was a gradual process and carers did not necessarily identify with being a ‘carer’, meaning support was often initiated in response to a crisis.

2.As the patient deteriorated, caring was all-encompassing meaning that carers were managing competing demands and prioritised the needs of the patient, often at the expense of their own.

3. GPs were perceived to lack knowledge about available services and their reactive approach meant carers were less likely to see their needs as legitimate and ask for help.

Conclusions: Strategies to identify and support carers need to be commenced early in the illness trajectory to prevent crises. Primary care teams need to work together to ensure that carer’s needs are legitimised so that they are empowered to self-identify.

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