- Call for Posters
- Assisted Dying Bill - Perspectives Informed by Palliative Care
- SPPC’s response to the public consultation on the SG Strategy for Palliative Care
- Adults with Incapacity Act
- SPPC Submissions to Parliament on the Assisted Dying Bill
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: 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
- Volunteer support to improve well-being for patients and carers
- Volunteers - vital to hospice viability
- Widening Access to Services for Children of Palliative Patients
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 the Social Worker in Palliative 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.
Poster abstracts of the month - March
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:
End of Life Care – what matters
Family satisfaction with care in the in-patient unit IPU
Improving people’s experience of death, dying and bereavement
End of Life Care - What Matters?
Author(s) of poster: P Brooks-Young, S Fife, J Dunn, T Smith
This poster was designed initially for NHS Lothian Delivering Better Care Conference to share the key findings of unannounced visits to 71 ward areas across 14 sites within Lothian. This work helped to capture the delivery of end of life care within NHS Lothian in real-time, from the perspectives of patients, those important to them and health care staff.
Essentially for You - Stress Management for Carers. Impact of a Short Intervention on Carer's Stress
Author(s) of poster: Jenny Gilbert, Betty McGrory
Introduction: Family carers play a significant role in enabling people to be cared for at home in the last year of life. Yet many find themselves in a caring role and rarely identify themselves as ‘a carer’. Many describe their role as an overwhelming and stressful experience for which they feel ill-prepared.
Method: A 4-week stress management programme was offered to all carers from a hospice community caseload for 9 months from April 2013. Each session included structured reflection on the stresses of caring, explored how these could be managed and was followed by relaxation. An evaluation questionnaire was issued to participants in addition to a collective end-of-project focus group.
Results: Ten courses were delivered over 9 months. Out of 230 invitations, 52 carers were willing to participate. Evaluation identified a strong positive impact on carer’s wellbeing and affirmation that the stress management strategies discussed were helpful.
Conclusion: Recruitment was intensive but resulted in a good uptake. The group dynamic was a key success factor. The project enabled joint working between hospice and local carers groups. This will help build sustainable provision of this intervention for carers of people with palliative care needs.
Family satisfaction with care in the inpatient unit of a hospice
Author(s) of poster: Susan Campbell, Miriam Tadjali, Kirsty Cornwall
Using a validated questionnaire on the death of the patient, the opinions about admission to the hospice were sought from the ‘next-of-kin’. Pilot undertaken on 100 returned questionnaires. Comments and evidence provided shows that the carers felt the patients were treated with courtesy, dignity, respect and compassion. Symptoms of pain, breathlessness and agitation were assessed and treated well. Communication was of an excellent standard with all levels of staff and information was provided when required. Comments and suggestions were fed back to the team and where appropriate action taken. We also included an area for the name and address of the carer to be included if they wished to be contacted in the future to become involved in discussions regarding continuing improvements in Hospice care. From the pilot sample 38% completed this section and these people were invited to join a group looking into the needs of carers.
This group was supported by the Chaplain and senior nursing staff and is ongoing with the Family Care team. The survey is continuing - the comments and suggestions are important feedback to our multidisciplinary team.
Improving people's experience of death, dying and bereavement
Author(s) of poster: Mark Hazelwood, Rebecca Patterson
This poster describes the work of Good Life, Good Death, Good Grief (GLGDGG), an alliance working to make Scotland a place where people can be more open about death, dying and bereavement. The absence of such openness is a barrier to the delivery of person-centred health and care towards the end of life and to the development and mobilisation of individual and community assets in this field. 54,000 people die in Scotland each year and 224,000 people are bereaved. 29% of acute bed days are used by people in their last year of life. Nearly 1 in 10 patients will die during their current admission. Discussion is a pre-requisite for shared decision-making but is often absent in a culture reluctant to acknowledge death and dying. Low levels of public knowledge and awareness of practical, legal, medical and emotional aspects of death and bereavement limit capacity for self-management and provision of informal support. There is growing willingness by very varied organisations and individuals to promote greater openness about death, dying and bereavement. The presence of a national alliance to encourage and guide activity in this area is helpful in developing and mobilising individual and community assets.
Author(s) of poster: Norma Langford, Deputy Charge Nurse, University Hospital Cross house; Josaleen Connolly, Macmillan Project Lead, NHS Ayrshire and Arran
I have undertaken an education programme delivering practical palliative care through a distance learning module and placement shadowing members of the various specialist palliative care teams in hospital, community and at the Ayrshire Hospice. The education was provided by the University of the West of Scotland and the overall project was funded by Macmillan Cancer Support. This programme provided me with the knowledge, skills and competence in delivering general palliative care to patients who were admitted to Ward 4C where I work. I was concerned that the process for issuing the death certificate for the deceased sometimes caused unnecessary additional distress for families. Without a death certificate it is difficult for families to finalise funeral arrangements or to begin to inform other agencies that the person’s death has occurred. I felt there were a number of simple changes that could be made. I based my approach on the premise that families’ preferences should determine the way in which they obtained the death certificate. This small change has now become standard practice and has helped to minimise distress for families by creating a simple, clear and compassionate approach for handing over a death certificate to a family member.
Poster Abstracts of the Month - August
The SPPC Annual Conference in 2013 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:
Understanding palliative and end of life care through community engagement
Up-skilling generalist nurses in palliative care
Using an outcome measure in specialist palliative care settings
The South Edinburgh Care Homes Project: A community nurse specialist led intervention to improve palliative care
Author(s): Finucane AM; Gardner H; Gibson H; McCutcheon H; McLoughlin P; Muir L; Murray SA; Oxenham D; Stevenson B (Marie Curie Hospice, Edinburgh; University of Edinburgh)
Background: Approximately 20% of people die in long term care settings. Hospices are well placed to support care homes to deliver palliative care to residents who would benefit.
Aim: To improve the delivery of palliative care to care home residents using a hospice-led model of care home support.
Approach used: Twenty-two South Edinburgh nursing care homes agreed to take part in the project. Care homes were divided into two geographically defined clusters. The intervention is currently being delivered to the first cluster. Key components of the intervention include: support from a dedicated Community Palliative Care CNS; two palliative care leads in each care home; palliative care training; palliative care review meetings with GPs, and implementation of the Supportive and Palliative Care Action Register.
Results: Baseline data relating to the deaths of 77 residents from eight care homes was collected. A high proportion died in the care home (92%); 83% had DNACPR documentation in place; 64% had some evidence of anticipatory care planning; and 55% had anticipatory medicines prescribed.
Conclusion: Despite a large proportion of residents dying in the care homes a significant proportion of deceased residents had no evidence of any anticipatory care planning. The intervention is will build on these results.
The Square Table Programme
Author(s): McGill M; McNamara K (Children's Hospice Association Scotland; Together for Short Lives)
This poster will describe the collaboration between two national organisations in the United Kingdom dedicated to children’s palliative care joining together to host three national conversations about children’s palliative care in Scotland.
Children’s Hospice Association Scotland (CHAS) is a national charity in Scotland and the sole provider of vital hospice services for children and young people with life-shortening conditions working at national, local and regional levels.
Together for Short Lives is the UK CPC organisation, working to help ensure that every child unlikely to reach adulthood, and their family have the best possible care and support whenever, and wherever they need it.
The Square Table programme offered a series of events which offered a structured environment in which the aspirations of children and young people with life limiting and life threatening conditions, together with the views and concerns of their parents and key carers were heard and understood in
common forum with key representatives from the entire children’s palliative care provider community.
Understanding palliative and end of life care through community engagement
Author(s): Connelly M; Hekerem D; Layden J; McLoughlin P; Sandeman K; Tyrell P (Argyll and Bute, Marie Curie Cancer Care)
Three Marie Curie service redesign programmes in Scotland (Argyll and Bute, Lanarkshire and Lothian) have been addressing the issue of health promoting palliative care and changing the culture around death, dying and bereavement.
This work has been led by extensive local community and stakeholder involvement to ensure that future initiatives and service design responds to the local needs and population. A series of stakeholder workshops were held in the
three areas and were attended by patient/carer representatives, voluntary, independent, health and social care. Participants were encouraged to brainstorm ideas and solutions to the question, ‘How would you improve the culture of death, dying and bereavement in your local area?’ A range of options were identified. This poster will describe the benefits of community engagement in health promoting palliative care, the common themes from across the three geographic areas and proposed work. It is anticipated that the engagement work will positively contribute to changing the culture towards death, dying and bereavement.
Up-skilling generalist nurses in palliative care
Author(s): Connolly J (NHS Ayrshire and Arran)
Aim: To up-skill 48 nurses’ knowledge and skills in palliative care who were working in the generalist areas within NHS Ayrshire & Arran over a 2 year period.
The programme was developed and implemented between the NHS, Ayrshire Hospice and the University of the West of Scotland (UWS) and funded by Macmillan Cancer Support. The purpose was to offer an opportunity to NHS nursing staff to complete a programme of academic and experiential learning in palliative care. The programme involved undertaking an academic distance
learning module with the University and a practice placement of 5 days with the different specialist palliative care teams. Time out to attend the scheduled placement and 6 study days was funded by Macmillan Cancer Support. A qualitative external evaluation was commissioned.
Results: Over 2 years, 39 nurses completed the programme. The impact of the academic and experiential learning was captured through semi structured interviews with the nurses, managers and key stakeholders. Ten key themes emerged.
Conclusion: The learning opportunity has been appreciated. Nurses feel more confident and are more aware of the other palliative care resources and services that are available to them and for patients in the wider community.
Using an outcome measure in specialist palliative care settings
Author(s): Cochrane E; Colville E; Doogan D; Ferguson M; Walker G (NHS Tayside - Specialist Palliative Care Services Dundee)
Patients were invited to participate in a 6-month pilot using the St Christopher’s Index of Patient Priorities (SKIPP) questionnaire within the Hospice, Day Care and Community Macmillan Nurse Team. Data was collected and analysed using the recognised and validated tool.
Results: Findings from this pilot would suggest that patients did benefit from input from all three teams and identified a positive shift for patients over a period of time. 121 completed questionnaires were analysed there was significant evidence to suggest a positive impact on patients’ quality of life, key symptoms and major concerns.
Discussion: It is recognised that obtaining valid and reliable measurement of the outcomes achieved by palliative care for patients is extremely challenging often because patients are too ill or because of fluctuating and changing needs. However the questionnaire takes account of response shift, a well known phenomenon in which a persons’ perception of subjective sensations can
change over time.
Conclusion: Having a tool such as SKIPP has been deemed a very useful way of evaluating the impact three areas within a Specialist Palliative Care Service have on a patients quality of life, key symptoms and major concerns. It is planned to repeat this exercise again for a 6 month period.
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