bluuebunny/crossref_metadata_2025 huggingface dataset:
P93 The hospice of St Francis spring centre: collaboratively reaching more people
Authors: McLaughlin Kimberley , Traxler Polly , Valentine Wendy
Published: October 2013

Context

“Hospices will need to change is beyond doubt. The scale of the challenge ahead is dramatic and will require hospices to significantly increase the extent and scope of end of life services”(Calanzaniet al2013). Since 2007, cancer diagnoses have increased by 16% in Hertfordshire and over the next 10 years projected to rise a further 14%. This collaborative project with our neighbouring hospice provides a locality-wide community programme to support those recently diagnosed or living with serious illness, their families, carers, friends and the community. Over the next 3 years, The Spring Centre will reach over 1,000 more patients and their families.

Approach

Re-aligning existing resources and community engagement is key to our programme. The St Francis Choir, Coffee Mornings and Film Club engage our community in regular activities throughout the year. Medical, nursing and therapists clinics provide physical, emotional and psychological support. Focused groups by our rehabilitation team range from fatigue management workshops, breathlessness groups, complementary therapy, gardening and creative therapies. Our Carers programme offers individualised support including benefits advice and relaxation classes. A variety of groups for bereaved adults, children and young people invite opportunities to share experiences, enjoy our gardens and even cooking classes! Outcome measures used to identify the effectiveness of attending the pilot fatigue group in 2012 showed that 80% of people felt they had the skills and energy levels to participate in more social or work activities.Feedback also highlights benefits, ‘the carers’ support group is a lifeline to me’.

Conclusion

The Spring Centre at The Hospice of St Francis is an example of thinking strategically and collaboratively about the role of our hospice, re-aligning existing resources and delivering the care that people want and need.
P94 Developing a Motor Neurone Disease (MND) service in austere times: the power of partnership working
Authors: Coupland Karen
Published: October 2013

Background

Prior to the changes, pockets of good practice existed but services were uncoordinated and communication ineffective. Care was often reactive in response to crises and patients reported feeling unsupported and uncertain whom to contact should their condition change. A multi-disciplinary MND clinic existed; however this was hospital based, difficult to access and community service provision was patchy. The need to improve services was identified at a stakeholder event, which brought more than 60 people with MND, carers, professionals and commissioners together.

The post of MND Coordinator was developed in discussion with the local MND Association, and supported by the local NHS Primary Care Trust. The post was funded and based within our local hospice in Bedfordshire, with the aim to take the lead and establish a single point of contact from diagnosis to death, for people with MND.

Clinical outcomes

Timely referrals to agencies for equipment, adaptations, therapy, information and support

MDT clinic moved, making this more accessible, as well as promoting sensitive introduction of hospice and palliative care services – improving access and advanced care planning

Domiciliary visits offered for support, monitoring and hospital avoidance

Discharge planning from hospital/hospice to reduce length of stay

Local organisations working together, promotes psychological and emotional wellbeing for people with MND and their carers and encourages self-management

Health and social care professionals benefited from MND specific education delivered collaboratively by statutory and charitable services

Comments received

‘The clinic is in such a lovely setting and much better for patients to attend than hospital’

‘It is a hugely important role. Having someone there to monitor the health and wellbeing of people, who otherwise can fall down a hole.’

Recommendations

Identify opportunities for collaborative working with local champions, using the voice of people living with MND and their carers to identify poor quality services and drive up standards.
P95 Above and beyond - the power of international partnerships
Authors: North Kate , Marston Joan , Thambo Lameck , Tauzie Jean , Paleri Anil , Talawadeka Pradnya , Muckaden Maryann , Chipulta Fred
Published: October 2013

Introduction

This project brings together partners from India, South Africa, Malawi and the UK to expand children’s palliative care services in Maharashtra state in India and in Malawi.

The project results have prompted commitment to palliative care service development above and beyond the original project scope. It demonstrates how international partnerships can inspire and promote others to take on palliative care to meet the huge need for palliative care around the world.

Methods

The project uses international donor funds to integrate children’s palliative care into existing services in both urban and rural settings.

Each partner brings to the project distinct skills and experience; ranging from project and donor management, paediatric palliative care knowledge, training and mentorship expertise, and advocacy skills.

Results

The mix of these skills has seen the following key results:

The development of children’s palliative care services in 5 new settings.

The integration of children’s palliative care into health service curricula.

The inclusion of children’s palliative care in draft palliative care policy.

The project has also prompted extended impact:

The National Rural Health Mission (Jawhar, India) has committed to a wider programme of palliative care service delivery and is already funding training, staff and services.

District hospitals in Malawi are showing strong interest in developing palliative care services

Project stakeholders are increasingly seeking extra funding and gifts in kind to support and develop children’s palliative care services.

Discussion

The collaborative implementation of this project has proved to be a catalyst for further development of palliative care than originally anticipated.

We would like to share our collaborative approach, together with more detailed results to inspire and encourage others to engage in partnerships to maximise impact and rise to the great challenge of meeting the huge need for palliative care internationally.
P96 A survey for children/young people supported by a hospice
Authors: Stanford Jo , Phillips Ruth
Published: October 2013

A survey for children/young people supported by a hospice

Introduction

The Care Quality Commission requires agencies to enable services users to participate in the development of the service.

Aims

This survey represents a children’s hospice first attempt to hear directly from the children and young people they support as part of the organisations Clinical Governance process.

Methods

Children and young people using hospice services have a wide range of needs, abilities and disabilities. Participants were encouraged to complete the surveys on their own if able or if needed with help from their siblings or parents/carers. The format was a simple questionnaire provided on paper and accessible on-line to offer participants a choice about how to reply.

Completed paper surveys were added to the on-line programme manually by the Clinical Governance Facilitators to aid collation and analysis.

Results

Of the 438 forms sent out 67 (15%) were retuned; some completed by the child/young person, on their behalf by siblings or parent/carer or siblings from their own perspective.

Respondents commented on activities they would like to see offered by the hospice such as DJ evenings and outings including holidays abroad. They also highlighted a few things they didn’t like such as staying over at the same time as young children.

Discussion

The survey offered children and young people with a range of complex needs the opportunity to comment on their experiences. The results will be shared with staff so they can discuss and consider ways of implementing changes to their practice in an effort to meet specific needs and improve the experiences of the service users.

Conclusion

The survey has provided a starting point. In future we plan to review the survey and include other methods such as participant observation to offer more children and young people the chance to participate.
P97 Development of the advanced nurse practitioner role in hospice care: A medical model
Authors: Hookey Claire , Whelan Jane
Published: October 2013

Background/Context

The role of the Advanced Nurse Practitioner (ANP) encompasses the provision of advanced levels of clinical practice, knowledge and skills. Whilst involving aspects of education and research, it is firmly grounded in direct clinical care. Responsibilities include assessing, diagnosing, planning and implementing programs of evidence based care and treatment. The drive to reduce junior doctors’ hours in hospitals in the last decade led to further development in the ANP role, with increasing autonomy and application of expertise ( RCN 2012). More recently, the ANP role has translated into hospice care, although generally these roles have developed within hospice nursing teams.

Aim

Following the resignation of a Speciality Doctor it was decided to develop an innovative ANP role within an already established, experienced medical team.

Approach used

An ANP role was defined for our local context with reference to national guidance and recommendations from the Royal College of Nursing. The role sits within the medical team, and involves the assessment and management of hospice patients, working autonomously but with support from the medical team. The ANP also participates in the medical on call rota, supported by the Consultant on call. The successful candidate had many years of nursing experience both in hospital and community, working at an advanced level within nursing.

Outcomes

The ANP role challenges traditional professional boundaries. However, the ANP has integrated well into the medical team, and both medical and nursing staff have identified benefits from the skills and experience that the role has brought. The post has also provided a cost effective means of fulfilling many roles normally undertaken by a doctor.

Application to hospice practice

Other hospices may wish to explore the development of Advanced Nurse Practitioner roles within their own medical teams.
012 Improving the transition process for young people with life-limiting conditions
Authors: Sivell Stephanie , Lidstone Victoria , Taubert Mark , Thompson Catherine , Nelson Annmarie
Published: October 2013

Research Aims

To identify the training needs of adult Specialist Palliative Care (SPC) teams to care for young adults and inform the development of an education package for adult SPC teams.

Background

The prognosis of life-limiting conditions of childhood has improved with an increase in the number of young people accessing adult SPC services. Adult SPC teams may be inexperienced in caring for the complex needs of these young people.

Methods

Delphi: An online Delphi process collated expert opinion on format, delivery and content of the educational package in three rounds.

Focus Groups: Focus groups were held with young people with life-limiting conditions, staff from a local adult hospice and carers. Discussions explored the care and support needs of young people and their families, and the training needs of SPC teams. Data were analysed using thematic analysis.

Results

Delphi: Consensus was reached on range suggested formats and personnel to deliver the training, and on clinical, psychosocial and practical topics. Training should be delivered as a continuous/rolling programme and not as ‘a one-off’.

Focus Groups: Discussions centred on: challenges of caring for young people; barriers to transition; staff education and training; facilitating transition.

Conclusions

The knowledge required by adult SPC teams to meet the complex needs of young people and their families is diverse and extensive. To optimise learning, training should be delivered as a continuous/rolling programme, tailored for content and mode of delivery. A template to guide handover and a single point of contact would facilitate the transition process.

Application to Hospice Practice

A series of study days has been designed using the information gathered in this research and will commence in June 2013. A template to guide handover is in development with plans to create a single point of contact to co-ordinate the transition process.
P98 Developing an advanced nurse practitioner role in hospice care: A workforce transformation project
Authors: Starnes Gina , Marciano Sally-Ann , Sowton Clodagh , Burt Andy , McDonough Elaine , Twomey Colin , Larden Michelle , Taylor Karen
Published: October 2013

Twelve hospices from the ECLIHP Regional group working with Skills for Health as part of a successful bid for £10,000 foa a supported project.

The overall aim of this project will be to improve the quality of care for people with complex palliative and end of life care needs and their families by ensuring 24/7 direct admissions access to specialist inpatient hospice beds and emergency out of hours assessment in the community.

The intention of this project is to support delivery of a flexible and responsive 24/7 hospice admission and assessment service through redesign of the existing workforce to introduce an Advanced Nurse Practitioner (ANP) role within the team.

Impact will be measured by agreed Key Performance Indicators

Desired Outcome

a Transferable Role Template for the ANP in Hospice Care defining the skills, competence, learning and development needed to fulfil this role.

an outline Business Case Template to build the case to commissioners of the benefits of the ANP role in improving the quality of care for people with complex palliative and end of life care needs and their families by ensuring 24/7 direct admissions access to specialist inpatient hospice beds and emergency out of hours assessment in the community.

Deliverables:

Development of an ANP Transferable Role Template within Hospice Care to be included in the Skills for Health Learning Bank.

Development of a Education and Training Framework to underpin the role.

An outline Business Case Template targeted at Commissioners

Written Job Description for the ANP Role in Hospice Care.

How to achieve the deliverables?

Define role, responsibilities and core job description

Create a Clinical Reference Group and arrange workshops

Develop formal partnership arrangement to support the project

Identify evaluation process

Agree scope of role and map competences/skills (NOS) sign off

Agree core education programme

Conduct baseline evaluation

Complete clinical/technical skills training and competency sign off

Define role, responsibilities in preparing Business Case Template

Agree Business Case and Sign off

Produce project outcome report
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 Aims

During 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.

Methods

A 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.

Results

We 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 conclusion

In 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

Introduction

This 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 Used

2 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 days

An 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 diaries

Findings

The 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.

Conclusion

Hospice 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

Background

As 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.

Aim

The aim of the project was to:

develop a mechanism to support and develop best practice

establish recognised pathways of palliative care within and between health boards for every child and young person with a diagnosis of a life-shortening condition

outline 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.

Approach

The 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.

Outcomes

The 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 practice

This 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

Introduction

This 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.

Aims

To hear directly from life limited children and their families about their day-to-day experiences.

Methods

Case 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 discussion

Children 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 inheritance

Diagnosis and prognosis

Acute loss of abilities

Slow deterioration

Life threatening surgery

The cycle of crisis and survival

The 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 implications

Families 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 Befriending

Improve the social well-being and psychological health of parents and their families.

Reduce parental isolation

Ensure 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 situation

Parents are able to communicate better with professionals

Approach Used

Five 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.

Outcomes

Between 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 Practice

This 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

Background

Regional 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.

Aim

To evaluate the success of the role

Methods

We retrospectively reviewed the agenda and minutes of every meeting held between 2010 and 2013.

Results

15 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.

Conclusions

Do we have regular parental representation?93% of meetings had a representative present

Do 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 up

Dothey 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.

Applications

This 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

Introduction

The 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.

Aims

In 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.

Methods

Regular 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 Results

Empowerment 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 Context

Recent 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.

Aim

The 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 Used

Building 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.

Outcomes

The outcomes of the project will be that:

young people and their families have more choice and control to make informed decisions about their care

children’s and adult services in the voluntary and statutory sector work together to support young people through transition

wider services, such as housing, education, employment and independent living provide services that meet the needs of young people with life-limiting conditions

Application to Hospice Practice

Adult 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 / Context

Medical 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.

Aim

To 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 Used

A 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.

Outcomes

A 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 Practice

The 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.
P110 Evaluation of medicines adherence in day hospice patients
Authors: Greenwood Julia
Published: October 2013

Background

Central to the care of patients in Day Hospice is an understanding of their compliance with medication. The Hospice has a Medicines Management Policy in place, but had no structured approach to measuring patients’ levels of concordance, from their perspective.

Aim of the Evaluation

The aim of the evaluation was to develop a method by which patient compliance could be assessed, explored and improved

Method

The National Institute for Clinical Excellence (NICE) produced guidance and a patient questionnaire on Medicines Adherence in 2009. The questions explore the role of the healthcare professional in supporting patient’s decision making, and understanding of their medicines. An amended version of the NICE questionnaire was developed and used, for which sixteen patients were randomly selected. Verbal consent was obtained and anonymity assured.

Results

It provided useful information about our effectiveness in supporting patients with their medicines adherence. We scored well in engaging patients in joint decision-making, however some other aspects such as exploration of the burdens and benefits of medication, and common side effects needed improvement.

Limitations

Some questions could be misinterpreted, and there was no facility to expand on answers given. The length and style of the questionnaire was quite difficult to implement with people who were fatigued and unwell.

Conclusions

This evaluation has been important to our understanding of our effectiveness in supporting medicines adherence. We intend to inform NICE of the amendments made prior to using the questionnaire within specialist palliative day services. We aim to further develop the questionnaire to evaluate patients’ experiences and concerns regarding their medication regimes, and to address the need for carer involvement (End of Life Care Strategy 2008), as they underpin concordance for many of our patients.
P111 Terminal opioid and sedative titration in two hospices
Authors: Shuler Andrew , Caddell Gail , Foster-Alexander Kirsten , Jager-Romero Joey de , Poolman Marlise
Published: October 2013

Introduction

There was anecdotal observation by professionals working across both sites that there was a difference to practice with opioid and sedative titration at the end of life. As an extension to early work at one of the hospices, it was decided to consider practice across the region, so a second hospice was invited to participate.

Aims

To quantitively assess practice of sedative use in relation to the EAPC recommended framework for the use of sedation in palliative care.

To quantitively assess practice of opioid use in the terminal phase.

To assess whether practice differs between hospices in North Wales, and to consider any potential reasons for the difference and implications for practice.

Methods

A retrospective case-note review of patients who died in the two units. Data collected included drugs, doses and increments, and proxy assessment of symptoms in the last week of life (MSAS-GDI).

Results

Groups were comparable in terms of background and demographics.

Practice differed with one unit using Midazolam and Levomepromazine more frequently and at higher starting doses.

There was no difference to symptom burden between sites.

Discussion

All doses used were within the limits described in the EAPC framework.

At subsequent focus group discussion potential reasons were discussed including differences in anti-secretory medication use and its impact on sedative use.

These findings have precipitated further work on both sites.
P112 Morphine and other opioid painkillers for moderate to severe pain: a NICE guidance compliant patient information leaflet
Authors: Bunn Ray , Gregory Amanda
Published: October 2013

The Medicines Management Group (a multidisciplinary team comprising of medical, nursing and pharmacy representation) at an independent hospice has developed a patient information leaflet (PIL) on strong opioids. This decision was made in response to the recent National Institute for Health and Clinical Excellence (NICE) guidance on ‘Opioids in palliative care: safe and effective prescribing of strong opioids for pain in palliative care of adults’(1)which recommends that verbal communication between healthcare professionals and patients about their medicines should be supported by evidence based, written information. The aim was to produce a PIL which was NICE guidance compliant and which also contained other salient information relating to the use of strong opioids. The PIL is titled "Morphine and other opioid painkillers for moderate to severe pain" and contains the following section headings:

Using Opioids - why prescribed, preparation and how to take, managing breakthrough pain

Side effects - common side effects, what to do if experiencing side effects

Driving and Travelling

Other Information - collecting from pharmacy, opioids and alcohol, storage, disposal

There is also the facility on the front cover of the PIL for the dispensing pharmacy to stick duplicate labels of strong opioid medicines dispensed so that patients and carers know to which drugs the PIL refers. The PIL produced has, if locally adapted, wide potential for use in any palliative care organisation and pharmacy dispensing strong opioids for moderate to severe pain in the UK.
P113 Re-designing how patient medicines information is presented on discharge
Authors: Bunn Ray , Gregory Amanda
Published: October 2013

A plethora of written patient information accompanies medicines dispensed (TTOs) for patients discharged from an independent Hospice inpatient unit. This includes:

Manufacturer’s patient information leaflets (PILs) for each medicine used within license - legally required.

Locally developed PILs for medicines that are unlicensed or for use off-label.

Green (regular) and blue (when necessary) ‘Drug Information Cards’ listing all medicines and dosage information electronically transposed from the TTO prescription.

Locally developed PILs informing about medicine groups warranting special care in use e.g. ‘morphine and other opioid painkillers for moderate to severe pain’.

It was observed that this ‘jumble’ of leaflets and medicines looked disorderly and unprofessional, with a real risk of information being lost, overlooked or simply discarded as unimportant. The aim was to develop how written patient information was presented to patients and carers in a way that was:

Professional and distinctly noticeable.

Neat, orderly and clear.

This problem was presented to the hospice Medicines Management Group (MMG) for resolution. The MMG is a multidisciplinary team comprising of medical, nursing and pharmacy representation with roles including the continuously improvement of the quality of pharmaceutical related practice and processes, often in an innovative way. They developed the following solution:

‘Hospice branded’ A4 front and rear cover, cardboard folder with rear cover hole punched near spine.

Flat bar file fastener fitted to the rear page to hold:

Explanatory page.

A4 unlicensed PILs.

A4 Drug Information Cards.

An A4 plastic pouch holding the manufacturers PILs (variable sizes)

The completed file is then placed in the bag containing TTOs.

This solution has potential for application in other settings.
P114 Improving the use of patients own medication in the hospice setting
Authors: Crowther Jeanette , Wanklyn Steven , Johnson Mel , Lund Samantha
Published: October 2013

Introduction

The use a of patients’ own medications is improved at Trinity Hospice by patient’s being encouraged to bring them in when being admitted. Advantages of using a patient’s own medications are widely recognised and include aiding prompt completion of medicines reconciliation, thus achieving more accurate prescribing on admission, medication being available faster on the wards and of a quality that is suitable for self-administration, reducing the number of late and missed doses, patients continuing to use medication brands with which they are familiar or are required to due to inter-brand differences in bioavailability and considerable savings for the hospice’s drug expenditure.

Aims

To establish a procedure framework that improves the re-use of a patient’s own medications whilst minimising patient risk.

To inform governance priorities for the re-use of a patient’s own medications particularly those involving high risk drugs.

Method

A multidisciplinary team was established with representation from pharmacy, doctors and nurses in order to develop a clinical protocol for the management of a patient’s own medications.

The protocol manages how a patient’s own medications are assessed for suitability to be administered using a decision-support algorithm, obtaining further supplies and the essential documentation. Staff were deemed competent to undertake this procedure provided they attended a training workshop and successfully complete the training competency.

Results & Discussion

In order to quality-assure the protocol adherence to the process will be audited on a regular basis. The results of this alongside incident surveillance will provide on-going risk management and identify areas for improvement.

Conclusion

Trinity hospice has approved this protocol. Staff eligible to undertake a role have been accredited to do so. Under the terms of the Hospice’s approval an audit of adherence and critical risk assessment will inform the further development of this medicine system.