bluuebunny/crossref_metadata_2025_split huggingface dataset:
P99 How has the introduction of advanced nurse practitioners role transformed the delivery of palliative care at east Cheshire hospice?
Authors: Clark Alexandra , Dale Sarah 
Published: October 2013

The introduction of two advance nurse practitioners (ANP) at East Cheshire hospice (ECH) has led to a more responsive stream line service, that meets the needs of patients, their families, loved ones and the organisation. The continuous presence of ANPs on the inpatient unit and Sunflower centre means they are able to ensure continuity of care and are a vital link between the medical and nursing team.Evidence shows that the process of admission to discharge has been enhanced. ANPs have proved to be invaluable, as they are in the position to provide care from a diagnostic and examination perspective, whilst using their compassionate nursing skills to build essential therapeutic relationships.The future of the ANP programme is exciting, the completion of the independent prescribing module will enable them to work autonomously, provide triage for the doctors, and allow the medical team to focus on patients with more complex needs. There have been challenges faced since the implementation of the ANPs and we hope showcasing our role and skills will help colleagues and the external MDT understand the benefit of ANPs to ensure patients needs are met. ANPs are not in place just to fill gaps, but to enhance and improve practice at an individual and organisational level.This abstract can be presented in more detail as a poster presentation.
P100 Short of doctors? could a physician’s assistant or advanced nurse practitioner be the answer? A project investigating the role of a mid-level practitioner on a Hospice Inpatient Unit
Authors: Parr Alison , Capewell Claire 
Published: October 2013

Introduction and AimsDuring a period of reduced medical staffing, the Hospice appointed an experienced Hospice Sister in the novel role of a mid-level practitioner on the inpatient unit. The role entailed working alongside the medical team, assisting with clinical reviews and designated tasks previously undertaken by doctors.A 6 month project piloted the role and made recommendations about future options.MethodsA literature review gathered information on Physician Assistants (PA) and Advanced Nurse Practitioners (ANP).20 staff were surveyed to ascertain views about the role.The experiences of 3 ANPs working in different settings/specialties were explored to further understand the potential variety and development of such roles within multidisciplinary teams.ResultsWe describe and compare different aspects of the roles of PAs and ANPs: the historical context, training, roles, revalidation and salaries.The key findings of the staff survey are highlighted. The majority of respondents felt the role was of ‘great value’ to the team, to patients and to families.Improvements were perceived in prioritisation of medical time, continuity of care, psychological and spiritual care of families and carers, communication between medical and nursing/AHP teams and flexibility of roles more widely within the team.90% of staff surveyed thought it would be ’extremely useful’ to have the role continue.Discussion and conclusionIn our experience, a Senior Sister working as a dependent practitioner alongside the medical team has worked well. However, in order to optimise the potential for this role, additional training is required.ANPs appear to provide the best option overall for a mid level practitioner in a Hospice setting. The main advantages over a PA are: ability to prescribe, availability of accredited training, autonomy of the role and familiarity of staff and patients with the title and role in other contexts.
P101 Providing a seamless service - Assistant practitioners working across hospice and community settings: a pilot study
Authors: Brown Jayne , Brant Fiona , Wilford Brenda , Mahoney Anne , Clements Anne , Olivant Marie , Henfrey Maria 
Published: October 2013

IntroductionThis paper will explore the role of the Assistant Practitioner (AP) in an innovative a 6 month collaborative pilot project between Leicestershire Partnership Trust and the Leicestershire and Rutland Hospice to test a model of care delivery through AP’s working across the hospice and community settings as an integral part of both health care teams.Approaches Used2 trainee assistant practitioners from each setting (n = 4), with the support of mentors, undertook 4 rotational work placements between the hospice and community, supplemented by monthly study daysAn action research model was used to evaluate the pilot and support a real-time development of the role and included qualitative interviews and focus groups (n = 4) with assistant practitioners, mentors (n = 5) and managers (n = 3), alongside analysis of the adopted competency framework and reflective diariesFindingsThe AP’s : were skilled and able to provide continuity of care following patients through from home to hospice and back; they helped develop inter-organisational understanding of ways of working; freed – up registered nursing time, offered support to HCA’s. The main challenge related to changing policies during the life of the pilot to allow the AP’s to fully embrace an extended role. This presentation will focus on the success and challenges in the development of the cross organisational working and the AP role, the views of stakeholders and the benefits to patients.ConclusionHospice and community settings were convinced of the value and utility of the role and are looking to recruit AP’s as part of their long term staffing policy. However, each organisation sees a different focus for the role and they are not yet ready to embrace the concept of shared posts working across organisational boundaries.
P102 Influencing national policy and practice frameworks – a hospice perspective
Authors: Carragher Pat , Boxer Colin 
Published: October 2013

BackgroundAs a national organisation providing specialist palliative care for children and young people, we have a responsibility to share skills and experience with colleagues in other sectors, and to develop strong partnerships to shape the development of palliative care for this group across all settings. This session will explore the development of a national palliative care framework for children and young people1.AimThe aim of the project was to:develop a mechanism to support and develop best practiceestablish recognised pathways of palliative care within and between health boards for every child and young person with a diagnosis of a life-shortening conditionoutline the available support at all stages through to the end of their lives, developing equitable, sustainable, age appropriate support, independent of the geographical area in which they live.ApproachThe Framework1was developed through a clinical network: Scottish Children and Young People’s Palliative Care Executive (SCYPPCEx) in consultation with paediatricians and lead children’s nurses throughout Scotland.OutcomesThe Framework1was launched at a National Square Table event in November 2012. Dissemination is being achieved through an NHS Chief Executive’s Letter and three regional workshops attended by professionals from many services contributing to palliative care for children in Scotland. A case study approach was used to explore the opportunities and challenges for implementation.Application to practiceThis is an important development in children’s palliative care in Scotland and has positioned children’s hospice care as having a central role. It will contribute to improving care for children and young people with life-shortening conditions.
P103 The daily experiences of life limited children and their families
Authors: Menezes Antoinette 
Published: October 2013

IntroductionThis is a society in which children are expected to live into adulthood. Not much is known about the long-term needs of children, who will not reach adulthood, but who may live with their conditions for many years.AimsTo hear directly from life limited children and their families about their day-to-day experiences.MethodsCase study provided the overarching strategy combined with participant observation, interviews and an invitation for young participants to use their own artwork and photographs to help them explain their day-to-day experiences. Eleven children, parents and siblings from ten families took part (39 participants).Findings and discussionChildren diagnosed early in babyhood seemed to have an identity within which the illness was integrated, perhaps because they were growing children hardly able to remember a time before their illness.The children who took part were going to lead short lives. Families tried to shut away this fact to get on with daily life and live life to the full for and with the child.Common elements (‘moments of realisation’) in the children’s life stories emerged:Questions of inheritanceDiagnosis and prognosisAcute loss of abilitiesSlow deteriorationLife threatening surgeryThe cycle of crisis and survivalThe child’s life and death.These elements followed similar patterns across cases despite the range of diagnosis; they ebbed and flowed throughout the child’s life generating fear and uncertainty for the child and their family.Care implicationsFamilies lived day-to-day in a society that expects children to live into adulthood. Participants felt alone with the knowledge that their child would die young, aware of the wider social context Professionals should be aware that ‘moments of realisation’ in the child’s unfolding life might highlight times when pressure on family communication is heightened.
P104 Developing a parent-led befriending service in a children’s hospice
Authors: Dorothy Gillespie 
Published: October 2013

In autumn 2010 funding was secured to pilot a bespoke Parent and carer befriending model designed around the specific needs of parents and carers who use the hospice.Befriending is recognised as a successful model for providing emotional, psychological and practical support. Befriending models are used nationally and internationally to help and support a wide variety of people, children, teenagers, parents.Aims of BefriendingImprove the social well-being and psychological health of parents and their families.Reduce parental isolationEnsure that parents who discover their child has a life shortening illness are supported, through befriending to understand their child’s special needs and their own feelings about them.Parents become empowered and better able to manage their family’s new situationParents are able to communicate better with professionalsApproach UsedFive parents were recruited and trained to become Parent and Carer befrienders.This is a volunteer role and is designed to be flexible to respond to the ever changing needs of the befrienders own unique family situation.All the recruits undertook a 40 hour training programme to provide them with the knowledge and skills necessary to be a professional parent befriender.Parents or staff can refer to the service; information is in the family information packs, around the hospice and on the hospice website.OutcomesBetween Jan 2011 and Jan 2012, 11 parents/ carers were befriended.An average of 40 hours per month of support is being offered to families.All parents who have used the befriending service reported benefitting from the service and would recommend it to another parent.Parents rated the befriending service on a scale of 1-10 the average score was 9.3.Application to Hospice PracticeThis service user led/ volunteer based model is transferable across all hospice settings.It is a low cost, high return service development in terms of value added for befrienders and the befriended.
P105 Evaluation of the Role Played by Parent Representatives within our Local Paediatric Palliative Care Network
Authors: Harrop Emily , Taylor Bridget 
Published: October 2013

BackgroundRegional children’s palliative care networks play a role in planning and delivering equitable and high standards of care, support and services to children with life-limiting and life-threatening conditions, and their families1. Our local network has had a parent representative since 2010, and is one of only three to do so.AimTo evaluate the success of the roleMethodsWe retrospectively reviewed the agenda and minutes of every meeting held between 2010 and 2013.Results15 meetings were held during the study period, and a parent representative was present at 14. Input made by parent representative included contributions to the work plan; engagement in discussions; offering information; and making specific requests.Evidence was found that all the questions and requests made by the representatives were addressed. There were also clear signs that the representatives had had a wide influence, on shaping their role within out network, they have also influenced the education delivered by our group and made significant contributions to the ongoing work plan.ConclusionsDo we have regular parental representation?93% of meetings had a representative presentDo Parent Representatives feel able to speak in the meetings?Only one meeting attended by a representative didn’t have a clear contribution. The parent representatives requested a regular dedicated agenda item, since then all meetings show a clear input.Are they heard?7/7 requests were accommodated and 8/8 questions were addressed either within the meeting or by follow upDothey make a significant contribution?Parent representative lead to a clear development of the parent representative role, as well as a meaningful contribution to virtually every topic addressed by the group.ApplicationsThis study demonstrates an example of good practice that may guide other networks in seeking user engagement. It highlights the impact and value of appropriate parental representation within paediatric palliative care networks. We have shared our experiences with others through Together for Short Lives network summit.
P106 Empowering children and guardians in Malawi
Authors: North Kate , Marston Joan , Tauzie Jean , Thambo Lameck 
Published: October 2013

IntroductionThe project aims to support the development of children’s palliative care services across Malawi. The project aims to integrate children’s palliative care into existing service provision in 3 central hospitals.AimsIn this piece of work within the project, the project team aim to empower children and their guardians to be involved in, and inform, decisions that are made about the provision of paediatric palliative care, at local and national level.MethodsRegular empowerment workshops and focus group meetings are held with project beneficiaries (children and their guardians).An advocacy meeting was between child beneficiaries and the Minister for Health for Malawi.Learning and ResultsEmpowerment meetings have resulted in patients and guardians feeling more informed about the care they receive and more in control.Focus group discussions with beneficiaries have resulted in changing practice at the services themselves.Empowerment meetings have been most successful when participants identify their own key concerns and have the space to explore solutions with others.Experience sharing and testimonies have played a great part in encouraging and learning from each other.The workshop with the project beneficiaries and Minister for Health allowed policy makers to hear first hand the experience of those living with life-limiting illnesses resulted in the minister pledging support to children’s palliative care in Malawi.The project is of interest to others who are working to support development of children’s palliative care. We would like to share our approach and learning with others, and to encourage discussion about participation and empowerment in any palliative care setting.
P107 Who has dreams fulfilled at end of life? An audit of a dream fulfilment organisation for children and young people
Authors: Galinsky Jayne , Forbat Liz , France Emma , White Jane 
Published: October 2013

Dream fulfilment provides a positive focus, hope and a sense of future for children and young people whose lives may be filled with hospital visits, pain or worry. This paper will present the results of an audit of a dream fulfilment charity’s database. The audit systematically analyses user demographics to find out more about who uses charities such as these. This project fits with the strategic exercise conducted by the NHS in England to ‘map’ palliative care services across England so that both health professionals and the public can see what services are, and where they are available.The data reported in this paper are drawn from Dreams Come True’s records of children and young people with life limiting and long term conditions and their families, and the dreams that they have had.Descriptive statistics are used to summarise the clinical and socio-demographic characteristics of the children/ families who have used the charity’s services over the last five years. Results highlight the range of health conditions that children who use the charity have, as well as reporting on other factors such as the child’s age, family size, gender and the type of dream requested. Analysis also suggests gaps in service reach which may reflect the unmet need in the sector as a whole.Results will be of interest to health care professionals working in the fields of paediatric palliative care, and care of children with long term conditions, as well as to other dream fulfilment charities. The audit’s findings have implications for referring organisations, such as hospices, and potential lessons for the adult sector.
013 Co-ordinated and Cost-effective Health and Social Care at the End of Life - The Responsibility of Hospices
Authors: Hartley Nigel 
Published: October 2013

Any future model of end of life care delivery in the UK needs increased and more effective partnership working between health and social care agencies. The 2008 Department of Health’s End of Life Care Strategy recognised that a cultural shift in attitude within the health and social care workforce is required, and an NAO report (2008) suggested a need for greater input from social care to address ongoing challenges. The 2011 publication from the Palliative Care Funding Review and the Report of the Commission on Funding of Care and Support recommends that there should be better integrated health and social care for those facing the end of life, and that this should be free at the point of delivery. This presentation tracks the development of a new Social Care service by a large UK hospice in partnership with a number of key community providers and commissioners. A number of different models of service delivery which have been developed alongside each other are presented, focussing on three areas:developing a referral process and assessment procedures, as well as delivering personal care packages for people in the last year of life on the locality end of life register.developing short term personal care packages enabling people to be rapidly discharged from hospital.developing a hospice-based co-ordination centre where people’s health and social care needs are integrated more successfully and cost-effectively.Outcomes utilising a range of tools and measures will be presented and an argument will be made that hospices not only have a responsibility, but also the relevant expertise and experience to develop, present and market themselves as end of life care co-ordination ‘hubs’ taking on responsibility for leading on the provision of integrated health and social care to people within the last year of life.
P108 The transition taskforce - Making the difference for young people with life-limiting conditions
Authors: Strudley David , Chambers Lizzie 
Published: October 2013

Background ContextRecent research from Leeds University shows there is a far greater number of young people who would benefit from palliative care, than previously believed. The study shows that the number of young people aged 16-19 with life-limiting conditions is growing and has increased by 44.8% over the past 10 years. Services, including hospices, do not currently serve this growing population of young people and their families well.AimThe project aims to make a real and tangible difference to the experience of young people with life-limiting conditions as they make the transition to adult services.Approach UsedBuilding on the growing evidence base, in particular findings from the STEPP Project, the project will adopt a two-pronged action-focussed approach to putting research and policy into practice:At national level,developing guidance, raising awareness, providing training and supportfor adult providers ensuring that the ‘push’ from children’s services is balanced by a ‘pull’ from adult services.At local/regional level,supporting the development of servicesandpartnerships between children’s and adult services, so that the research and good practice that exists is implemented on the ground and disseminated nationally.OutcomesThe outcomes of the project will be that:young people and their families have more choice and control to make informed decisions about their carechildren’s and adult services in the voluntary and statutory sector work together to support young people through transitionwider services, such as housing, education, employment and independent living provide services that meet the needs of young people with life-limiting conditionsApplication to Hospice PracticeAdult hospice services can learn how to plan and deliver the care that young adults with life-limiting conditions need.
P109 Transition in palliative care study day series
Authors: Lidstone Victoria , Sivell Stephanie , Taubert Mark , Thompson Catherine , Nelson Annmarie 
Published: October 2013

Background / ContextMedical advances have led to more children with life-limiting conditions surviving into adulthood with an increasing number accessing adult Specialist Palliative Care (SPC) services. These young adults often have conditions unfamiliar to adult SPC professionals, who may be inexperienced in caring for their complex needs. Results from previous research carried out by the same team, identified a need for a training/education programme for adult SPC professionals and provided recommendations regarding content and delivery.AimTo develop a training programme to help up skill and build confidence in adult SPC professionals regarding the care of young adults with life-limiting conditions.Approach UsedA project team, consisting of children’s and adult palliative care providers, researchers and the All Wales Palliative Care Transition Lead, was convened to design a purposeful and effective training. The training was specifically created such that it would be suitable for a multi-disciplinary audience which would provide a comprehensive grounding if completed, but could also be delivered piecemeal so that participants had as much flexibility as possible regarding attendance. The content was informed by previous research.OutcomesA series of six linked study days was designed such that each day could be attended as standalone, but those attending all of the days would have a comprehensive grounding in young adult care. Each study day includes a balance of clinical, practical and psychosocial topics suitable for a multi-disciplinary audience. Training will be delivered between June 2013 and June 2014.Application to Hospice PracticeThe study day series is open to all professionals working in adult hospices who may increasingly be called upon to care for young people with life-limiting conditions. By improving the knowledge and skill base of these professionals, professional confidence will increase and lead to an improvement of care for these young people.