bluuebunny/crossref_metadata_2025 huggingface dataset:
Does respite care address the needs of palliative care service users and carers? An exploration of their perspectives and experience of respite care
Authors: Wolkowski Anna
Published: September 2011

Introduction

There are clear indications that over the coming years, an increasing amount of support for carers of patients with palliative care needs will be required. In recent UK policy and guidance respite care is frequently mentioned as a key factor in supporting carers. However, little is known about respite care services for people with palliative care needs and their carers and services appear to have developed on the assumption that they are a “good thing”. This study addresses this gap in knowledge. It is located in a professional doctorate study where parallel application in practice is encouraged.

Aims

To explore the perspectives and experience of palliative care service users and carers of respite care.

Method

The participants were hospice service users and carers who had experienced respite care in that hospice and other settings. The approach was qualitative and data collection was carried out by unstructured informal interview and analysed in accordance with Grounded Theory strategies.

Results

Analysis of the data showed that there is nothing straightforward about respite care and the concepts of need and acceptance, vulnerability and resilience, risk and enablement, loss and gain all emerged.

Discussion

This study confirmed that respite care suffers from a problem with definition and is often talked about in a trite way which doesn't reflect the complexity of the caring relationship it is supposed to be sustaining.

Conclusion

Respite care is valued by palliative care service users and carers. The articulation of respite care needs and the insights gained in this study have the potential to influence practice and provide a platform for service development and improvement.
Developing an electronic records system, SystmOne, to meet the needs of children's hospice services
Authors: Leese Carolyn , Rennie Tracy
Published: September 2011

With the challenges set by the Department of Health National Strategic Programme, in 2009 Children's Hospice Services in the East of England started an ongoing major strategic development; the implementation of an electronic care records management system, SystmOne. The system is designed to improve management information to inform the development of services, improve sharing of information and enhance the quality and consistency of records.

The project has required a long term commitment by the organisation to ensure the system is developed effectively to meet the organisations' needs. During the last year, the main aim of the project has been focused on the development of care and support assessment tools and care plans.

An innovative approach to the development of the assessment tools and care plans has involved:

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Collaborative working with external experts

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Recruitment of a SystmOne Manager

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Use of expert knowledge of key care and support professionals

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Engagement of all staff

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Involvement of Family Forums

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Appointment of Champions.

The initial trials of the assessment tools and care plans proved instrumental in their successful implementation across the three hospice localities. However, there were some initial challenges to overcome including the:

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Resistance to change resulting in the lack of recognition by some staff and managers of the need for electronic care records

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Managing momentum and the lack of some staff and managers' commitment to dedicate time for using SystmOne.

The development of assessment tools and care plans will enable the creation of shared clinical care records with other healthcare providers, who are also users of SystmOne improving functioning and co-ordination between agencies. The sharing of records will enhance interagency working and communication, immediate availability of information, timely communications about changes to care and care needs.
Developing a carers group
Authors: Haskins Dorothy , Chaddock Becky , Ashton Wendy
Published: September 2011

Introduction

It was identified that there was a need to support carers within a multidisciplinary environment. The group enabled carers to meet and share experiences.

It is important to care for the carers.

Aims

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To provide a structured programme for carers.

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To impart knowledge and information to carers on a variety of topics.

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To have a holistic approach to providing support for carers, and to incorporate all members of palliative care team to contribute to the programme.

Methods

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Evaluated existing service for carers.

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Visited carers group in another locality.

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Informally interviewed carers at Day Hospice re: need and content of the programme.

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Developed a 12 session programme over 6 weeks, meeting weekly at the Hospice.

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Pilot included Day Hospice patient carers, and then expanded to open referral system.

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Evaluated each session and then the entire programme.

Results

Feedback from evaluation shows carers felt supported, gained motivation and benefitted from useful information.

From pilot session:-

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10 sessions scored 100% very satisfied

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1 session scored 20% least useful, 20% most useful, 60% very satisfied.

From 2 sessions:-

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67% were women

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33% were men.

Informal comments were positive. several would like an avenue to continue to meet after group has finished.

Discussion

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Results show that the need to support and provide information to carers was met

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At the end of the programme carers reported they felt more supported and better informed

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Established peer support continues with some carers

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Feedback showed that it would be more beneficial to have longer sessions over an 8 week period

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Referrals avenue to be extended to other teams and programme to be more widely publicised.

Conclusion

With user involvement we have developed a support service to carers with a focus and structure. This supports and enables carers to care for themselves while caring for others.
Commissioning end of life services using care profiles
Authors: Gandy Rob , Roe Brenda , Rogers Jean
Published: September 2011

The Department of Health (DH) required local reviews of End of Life (EoL) services in England ahead of the publication of its National EoL Strategy in 2008. Related cross-sector work undertaken by Liverpool Primary Care Trust (PCT) stressed the need for a means of specifically commissioning EoL services.

It was proposed that care profiles could enable service requirements to be set in respect of skill mix, delivery, quality and outcomes for each stage of the EoL pathway. The DH had used care profiles for a variety of services in the 1990s. Therefore, during 2010, Liverpool PCT undertook a project to establish whether the methodology could be used to commission EoL services (other than those delivered to inpatients in hospitals) by adapting the original structure and tailoring it for commissioning purposes.

An iterative approach was applied through a series of four workshops, based on action learning events, which sought consensus among participants from across a full cross-section of commissioning, provider and service user interests. The outputs were evaluated by an external reference group.

The project was a success. Its recommendations were subsequently used to commission EoL services across Liverpool. One conclusion was that the basic service requirements for EoL care are the same irrespective of the related disease. Care profiles are simple and flexible, and they complement and augment integrated care pathways. By requiring the recording of outcomes throughout the care process, they aid quality and audit processes. They offer the potential to cost EoL services, and should be transferable to other conditions.

Care profiles can support GP commissioning by providing clinically relevant and detailed information to specify services.

Subsequent work established how the EoL care profiles can support advanced care planning, by assuring the range, quality and consistency of information given to patients and carers, with any potential choices highlighted.
The impact of a new end of life care occupational therapy post in a community rehabilitation team
Authors: Wisbey Kathy
Published: September 2011

Introduction

A newly funded EoLC occupational therapy post was recruited to in 2010 to work within a multi-professional generic adult community rehabilitation team. It was evaluated after 1 year.

Aims

The post was created to support the EoLC strategy by increasing access to palliative and EoLC services for patients with both malignant and non-malignant conditions and to improve the quality of care provided. The post sits with the NHS community rehabilitation team and is supported by the hospice based community palliative care MDT.

Methods

The post holder carries a specialist palliative care caseload, acts as an expert resource for colleagues, provides education, consults and helps ‘skill up’ generic therapists who may have had little or no exposure working with a palliative care population.

Review after 1 year of new service developments, structured feedback from colleagues within the service and in partnership organisations.

Results

Increased understanding of the role and value of rehabilitation services in palliative and EoLC. Increase in number of palliative care patients treated by the team. Improved clinical care and patient satisfaction. Better coordination of care. Admission avoidance (on non-medical grounds). Key role enabling PPC to be achieved. Increase in advance care planning discussions and activities.

Discussion

There has been an increase in access to adult community rehabilitation services and also improved quality of care provided to patients with a range of life limiting diseases through new service initiatives, sharing good practice and expertise and targeted education and training for team members.

Conclusion

The existence of the EoLC post has demonstrably supported local and national EoLC strategy by broadening access to palliative and EoLC services. Professionals within the team have developed skills and specialist knowledge thus improving their competence and confidence. Enhanced quality of care has improved the experience of patients, their families and carers.
Grief and bereavement – supporting siblings of a children's hospice service
Authors: Dempster Tracie , Cooper Lynn , Petty Glynis
Published: September 2011

Children and young people's palliative care is an increasingly recognised specialty for life limiting and life threatening conditions. These children often have a difficult life filled with hospital appointments and strange professionals invading their homes. The siblings of these children may often be forgotten about or neglected, as the focus is on the sick child. The siblings have their own grief and bereavement and very often need support in getting through this.

Our children's hospice at home service offers pre and post bereavement support to the whole family, but recognised that more could be done to meet the specific needs of siblings.

There was a review of the caseload to identify possible siblings ranging in age from 5 to 19 years. Family's views were sought, and discussion was had at the multidisciplinary team meetings to identify appropriate participants. Following a successful bid to the Department of Health children's palliative care funding, two separate age-appropriate support events for siblings were organised. The older children (11 – 19) did not take up the opportunity for a place, so only one event was held for the younger age group. The day was structured and therapeutic group work formed the basis for the sessions, led by specialist children's palliative care nurses, the play therapist and support staff.

It was recognised that the older children regularly attend a youth group which offers them ongoing support. The day was very well evaluated by the children attending, and subsequently their parents. More sibling events will be organised for the future, as the day proved to be an effective way of meeting their needs. Due to the success of the day, there is also a plan to open up future days to the children of our adult palliative care service, who have some similar needs.
Nurse-led palliative care clinic: optimising choice for patients
Authors: Cowan Margaret-Mary , Cardy Claire
Published: September 2011

Clinics at the hospice have been largely medically-led with patients attending on an ad-hoc basis with eligibility restricted to existing patients. This project aimed to set up weekly nurse-led clinics with access to all patients; thus allowing patients to access our service at an earlier stage and enabling a more seamless transition to our Specialist Homecare Team when their condition deteriorates.

The clinic was established by an Advanced Nurse Practitioner with appropriate training using Hatchett's (2008) guidelines and aimed to offer a less threatening option to access palliative care in a clinic environment instead of a home visit. The clinic sees patients at initial referral and for ongoing support and fulfils both the DH (2010) suggestion to offer more choice to patients and widen intake to non-cancer patients as well as advancing nursing practice.

Evaluation was facilitated using a questionnaire completed by patients attending. Data was evaluated and comments collated in themes for analysis by the researcher.

This clinic was evaluated highly by patients with 100% saying appointment length was appropriate and 67% stating that their symptoms were fully assessed. 100% of attendees felt satisfied about being seen by a nurse rather than another healthcare professional.

After 1 year referrals for assessment have steadily increased with one fifth from outside agencies. Presently the service has a caseload of clinic-only patients which is a step towards increasing choice and shows greater access to existing hospice services.

The findings confirm that the clinic is an effective use of time and skills and is well received by patients. It offers another dimension of service for patients and this data reinforces the need to extend and develop this service.
Taboo or not taboo: a collaborative hospice/theatre/schools project
Authors: Withell Bridget , Irvine Nicola
Published: September 2011

Introduction

During their school years, an estimated 22 000 children and young people will lose a parent. Many others will experience the death of close relatives or friends, yet schools and society struggle to know how to support them because talking about death is ‘taboo’.

Purpose

The purpose of this exciting project is to enable students and their teachers to talk openly about dying in a way that dispels some of the euphemisms, myths and fear associated with death and bereavement and to promote the recognition of death as a natural part of living.

Preparation

The theatre company has agreed to create, write and perform a multimedia drama using video and live performance as an integral part of a half-day interactive workshop for schools on death and bereavement. It is aimed at Key Stage 4 students, and in addition to relevant lesson plans, schools will be supplied with information packs for teachers, students and parents. Schools will be required to have some counselling support available for students.

The hospice undertook the original groundwork for the project and continues to be closely involved as advisor on the content of the drama, and with the schools liaison work.

Current progress

A light-hearted sketch has been created which uses humour to address this serious issue; it will be performed by about eight young student actors. The first six schools who expressed an interest in the project have been selected to take part in the initial phase. Funds for the project will be raised by schools.

Ongoing plans

The project includes plans to record the theatre piece on DVD for use in other schools and general release to a national body such as Help the Hospices.
Establishing an integrated and coordinated end of life care service – working in partnership
Authors: Heaps Kate , Jones Penny , Rattigan Carla , Howsam Alexis , Stokes Jackie , Williams Beth
Published: September 2011

The Greenwich Care Partnership was established in November 2010 to develop and provide an integrated end of life care service for the residents of the London Borough of Greenwich. The service is provided by one NHS organisation and two charitable organisations working together to provide a seamless, responsive service for dying people at home. The service has initially been commissioned on a “test and learn” basis, to establish the potential risks, benefits and potential cost savings of providing such a comprehensive service based in the home.

The service aims to:

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Provide planned and urgent care around the clock to people at the end of life

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Reduce admissions and length of stay for people who do not need or wish to be cared for in hospital

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Improve the quality of care provided, reducing duplication and the time that clinical staff spend on administrative tasks

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Provide support for the key worker and improve inter-professional communication 24 h a day

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Reduce unnecessary expenditure and allow investment in services which enhance patient experience and promote choice, dignity and control at the end of life

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Support informal carers before and after bereavement.

Data will be presented as monitored against Key performance indicators of the project, this will demonstrate achievement of the aims, although the project remains in development on date of submission. Additionally, the presenter will reflect on the highs and lows of partnership working and make recommendations for others embarking on a similar venture.

This presentation will provide information which will be of use to any organisation considering embarking on a partnership venture; this approach is likely to be much more common in the current political climate. As we try to increase quality and capacity for care at home, this service delivery model will be of increased interest.
Developing a clinical skills competency framework
Authors: Ebeling Sophie
Published: September 2011

Introduction

In this unique care environment, palliative and respite care is provided for young adults with a diverse range of life limiting conditions, who have complex and multiple care needs. Thus, the demands on healthcare assistants, with regard to the range and level of skill required to care for these patients, is equally diverse. In light of recent commentary on the debate surrounding the registration and regulation of healthcare assistants, the organisation began to consider how best to prepare for these likely changes. It was concluded that robust assessment and maintenance of competence would be essential. A review of competency based training packages currently available was undertaken. However, due to the diverse skills practised by healthcare assistants in this environment, these packages were not suitable to meet the training needs identified.

Aims

Inspired by competency based training packages available locally, a clinical skills competency framework was devised as a practice based learning and assessment process. The clinical skills competency framework was developed as a single document that would serve as a record of competence and training for the organisation and the individual, a template for assessment of competence and also form the basis of a professional portfolio of clinical skills for the healthcare assistant.

Methods

A focus group was formed in order to compile a standardised skill list for healthcare assistants within the organisation. Competencies were compiled, alongside evidence based training packages, by registered nurses with particular skill, experience or interest in the relevant area of care, thus acting as a development exercise for the nurses as well.

Conclusions

The collation and implementation of this training package has been the catalyst for a cultural shift within the organisation, towards integration of practice focused teaching and assessing into all aspects of clinical work.
“Together we care” – bringing hospice and school communities together
Authors: Bunce Alison , Lee Janice , Milligan Stuart
Published: September 2011

Introduction

Public education and health promotion are vital activities in every area of healthcare. The way society views death and dying can contribute to the experiences of people receiving end of life care and their carers. However both the End of Life Care Strategy and ‘Living and Dying Well’ highlight a lack of openness and discussion around death and dying. Both strategies call for national and local action to promote public awareness and challenge misconceptions.

Ardgowan Hospice's ‘Together We Care’ schools project aims to dispel myths around and promote healthier responses towards death and dying.

Aims/objectives

The project aims to bring together two different organisations serving our local community in an innovative and purposeful way. It will raise awareness within three school communities of the role Ardgowan Hospice plays, and will help children to be less anxious about discussing and contemplating death, dying and bereavement.

Method

The project involves hospice staff:

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Developing innovative and purposeful relationships with our local schools

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Raising awareness of the role the hospice plays

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Bringing the hospice's key values to life through creative art projects

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Engaging with and enabling children to freely discuss any issues surrounding death, dying and loss.

Results

The proposed poster will present data collected through the use of workbooks and evaluation forms.

Discussion

Early evaluation results have shown that there is an increased awareness of the work of Ardgowan Hospice at all three schools, and that the first meeting with the classes involved was invaluable. The focus of activities to date has been on the hospice's key values.

Conclusion

The project has enabled excellent relationships to be established. It is hoped that this kind of innovative and creative approach will begin to change attitudes to death, dying and loss in our local community.
The intelligence hub approach to sharing and learning
Authors: Hodson Melanie
Published: September 2011

Introduction

The term ‘intelligence’ derives ‘from the Latin verb intelligere which in turn comes from inter-legere meaning to “pick out” or discern.’ Here it encapsulates the processing and sharing of gathered data, experiences and other information to develop knowledge, highlight innovation and demonstrate the impact of hospice care.

Aims

Case studies are a powerful example of those experiences which contribute to hospice care intelligence. Providing a practical approach to learning and facilitating networking, they encourage service development and the sharing of new ideas and innovation. We are developing a case study resource bank to share experiences and practical project learning with hospice colleagues.

Approach

This ongoing project is creating a new resource by collating existing and researching new case study materials for various audiences. The value and impact of access to this fledgling case study resource is indicated by the example of work done by the national fundraising support team in gathering case studies on income generation to share on the members' area of our website. A hospice adopted a new community engagement idea outlined in a case study from this resource. The activity raised significant additional income for the hospice and has now been incorporated into their annual income generation programme.

To help raise the profile of hospice care and inspire innovation, the project team invite hospice and palliative care colleagues to contact us with activity updates and project news so that, together, we can more effectively share information on emerging work and ideas in hospice care delivery and development.
Clinical compassion
Authors: Palmer Eileen
Published: September 2011

Sometimes, people coming into specialist palliative care units unexpectedly improve with simple, compassionate care. Is this a mystery? Or does compassion directly affect human biology in ways we are only just beginning to understand?

There is a widespread belief that kindness and compassion matter. They are what we would want for ourselves, or our loved ones; central, across religions and across cultures; taken as “given” by patients and families; and required by NHS constitution. Yet they are often absent, education and policy documents, and from clinical care settings. Educating for compassion remains an uncertain art.

A Masters thesis, (awarded a distinction by the University of Oxford, 2010) explores the biological impact of compassion on the brain and the body, including its effects on the μ-opioid receptor system and the autonomic nervous system, as well as its observable effects on distress. Compassion switches on the μ-opioid receptor system. Compassion directly affects the human body in ways that are conducive to healing and wellbeing. Moreover, the neural circuits of compassion are contagious via the mirror neuron system and they can be trained and developed using the brains inherent capacity to remodel its neural circuits with practice (neuroplasticity).

A simple model of the neural basis of the primary compassion pathway, and its positive and negative modulators gives a starting point for developing more effective educational and organisational strategies for compassion. One promising approach to developing compassion is by using mindfulness training, such as mindfulness based cognitive therapy (MBCT). A small pilot study of MBCT training for Hospice at Home nurses shows acceptability, and measurable impact on wellbeing, self compassion and clinical empathy. Could this be one way of re-prioritising compassion in healthcare systems?
Hospice support services from diagnosis to infinity and beyond ….
Authors: Hewitt Linda , Green Carol , Bober Maggie
Published: September 2011

Completion of a research thesis, as part of an MA in Hospice Leadership, led to the development of a new concept of Hospice Support, concordant with the North West End of Life Care Model.

This brings together the diverse range of Hospice Services with the intention of Hospice moving from being complementary to the PHCT, to one which is prepared to take ownership and leadership on key areas of community based palliative and end of life care development.

Develop a new concept of Hospice Support, by reforming services to work under one umbrella, including medical, social and psychological disciplines within the Hospice team, maximising the use of appropriately trained volunteers.

Develop a protocol for family support, continuing into bereavement.

Social, emotional, psychological, spiritual needs of patients, carers and their families were strategically reviewed.

Creation of a new Hospice Support Services ‘Hub’, where the social, emotional and psychological needs of patients, carers and their families are reviewed on a weekly basis, taking cognisance of their medical needs.

Allocation of a lead professional to liaise with the referred person throughout their involvement with Hospice Support.

The development of a comprehensive and structured pre and post bereavement follow-up; following 40 h training time for Family and Bereavement Support Volunteers.

A variety of new services are being developed, together with new opportunities for volunteers, including;

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Open-ended Support groups; Patients, carers and bereaved

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Creative therapeutic groups; patients, carers, bereaved

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Support volunteers; Patients, carers

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Family and Bereavement Support Volunteers

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Complementary therapies

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One to one support; Complex Cases

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Living for Today closed groups; Patients, Carers.

Despite the challenge of change we are developing a continuing support service for patients, their carers and families who have varying individual needs at different times in the end of life trajectory of the patient.
The ABC to education: collaborating, coordinating and contributing to end of life care
Authors: Russell Sarah , Doyle Carolyn , Harris Emma Jane , Convey Vanessa
Published: September 2011

Introduction

The ABC End of Life Programme is a blended approach to end of life education across the East of England regions of Bedfordshire, Hertfordshire, Anglia and Essex. It has been funded by NHS East of England for 2 years. It represents collaboration across settings contributing to the improvement of the end of life care experience for staff, patients and families.

Aims

To improve the end of life experience of patients and carers (including advance care planning) and reduce inappropriate hospital admissions.

Methods

An education programme using the specifically designed East of England Care Home education programme, ELCA modules and mentor support. Aim is to deliver over 2 years to 1800 care home staff and 5000 workforce B staff. Activity and impact is measured using a combination of benchmarking tools, patient notes audit, confidence questionnaires and educational activity.

Results

Pre and post course questionnaires showed a confidence increase in end of life care. Activity measurement showed an increase in accessing other education sessions as well as in house end of life care policies and procedures (eg, bereavement policies). Data referring to inappropriate hospital admissions will be shown.

Discussion

The programme content and measurement was debated and designed through a combination of palliative care educators, clinicians, commissioners, lead nurses and EOE End of Life lead. This combined approach although challenging in terms of coordination enabled an approach to education that could then be measured across a much bigger geographical region.

Conclusion

It is challenging to design education programmes across settings and borders – but it is worthwhile as it provides a systematic approach to delivery and measurement. Using a blended education approach (face to face facilitation/e learning) enables learning to be work based relevant and centred.
A pilot of a pathway for individualised care of the frail elderly at the end of life
Authors: Hirst Becky , North Christopher , Owen Janet
Published: September 2011

Introduction

Palliative care has traditionally focused on those with a cancer diagnosis. For the frail elderly end of life care needs are often not identified or addressed, resulting in inappropriate admissions to hospital when they are dying. This pilot demonstrated that many frail elderly people nearing the end of their lives can be identified and by documenting preferences it is possible to promote quality of life and a dignified death in a person's chosen place.

Aim

To improve End of Life Care across Barnsley and increase documentation of personal preferences for care.

Method

Care homes covered by two general practices were involved. Residents were assessed using the Gold Standards Prognostic Indicator Guidance and “The Surprise Question”. Once identified preferences were recorded using the Preferred Priorities of Care Document (PPC), information was shared with Out of Hours care providers and care plans and simple pre-emptive prescribing put in place.

Results

43 patients were identified as potentially being in the last year of life, had a PPC and a care plan in place. During the first 6 months of this pilot, 10 of the 12 deaths which occurred were in the patients' preferred place. Anecdotally, improvement in information sharing between professionals increased confidence of care home staff and quality of care, non-elective admissions and length of hospital stay reduced.

Conclusions

Local ownership by and drive from the health and social care professionals involved were key to the success of this project. Pro-active recognition of frail elderly at the end of life enables planning focused around individual wants and needs. Staff, families and patients found discussions positive. Recognition of need improved quality of care for this population. Resources now need to be identified in order to roll this initiative out across the locality.
What a waste! Futile prescribing and the cost of wasted medication at the end of life
Authors: Taylor Ros , Bryant Martin , Chadwick Sharon
Published: September 2011

Introduction

Poor prognostication leads to continuation of potentially irrelevant, expensive and harmful medications when time is short, for example, statins.

Similarly, necessary medications are over-prescribed in large amounts, when the patient may only have days to live.

When a patient dies, all these drugs are destroyed, even those in original sealed packs.

The cumulative cost of destroyed medication is huge – at a time when the NHS can ill- afford such wastage.

Aims

To assess the extent of irrelevant prescriptions in a cohort of patients admitted to a hospice for terminal care.

To analyse the annual cost of irrelevant prescribing and drugs for destruction after a patients death in a UK inpatient 12 bedded hospice.

Methods

A retrospective survey of:

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All drugs brought into the hospice at the time of terminal admission

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Analysis of key medication groups, highlighting those irrelevant in a patient with weeks or days to live

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Cost analysis of medications deemed irrelevant by two experienced hospice physicians

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Cost analysis of drugs destroyed after a patients death.

Expected outcomes:

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Prescribing patterns at the end of life, highlighting extent of futile prescriptions.

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Estimated cost to the NHS of destroyed drugs following a year of patient deaths.

Discussion

Prescribing is an art, and medicines are harmful to patients if not relevant. Lack of continuity in primary care and infrequent review of dying patients may lead to prescribing of inappropriate and costly drugs. This a burden to the patient and to the NHS, with large amounts of medication being destroyed after death.

Conclusion

The study is in progress – when finalised, a total cost of destroyed drugs in one UK hospice will indicate a massive national problem.

Suggestions will be made as to how this cost burden could be reduced, underpinned by more appropriate prescribing when time is short.
Innovative approach by the hospice involvement in schools national curriculum
Authors: Freeman Wendy
Published: September 2011

This project aimed to offer schools within the local catchment area and opportunity for the Hospice to work collaboratively alongside them with delivery of the National Educational Curriculum of Personal, Social, Health and Economic Education.

A resource pack was produced and posted to 29 secondary schools and 1 college in the catchment area to offer a tailor made programme for their school curriculum focusing around Personal, Social, Health, Economic education and Sex and relationships Education related topics.

The initial response from secondary schools was poor so the project had a second phase and this was to target 123 junior/infant schools in the catchment area.

The delayed response to the project was due to postal issues and not being able to identify a key worker in each school who leads PSHE. Schools curriculum planning and demands on teaching staff also affected the timetabling of additional educational sessions. Many schools showed an interest but never progressed to planning sessions directly.

From a further redesign of the project we have established direct links with 32 PSHE leads in our area and delivered training sessions to them high lighting areas of education which we are able to offer as bespoke sessions, developing interest already. One school has had two sessions delivered in the Hospice enabling staff and students to meet patients and learn about the Hospice and other topics. Another school has had sessions delivered in the school working with the Duke of Edinburgh students enabling fundraising for the Hospice. Two schools have had assemblies with question and answer sessions enabling us to dispel the myths of a Hospice.

The findings indicate that schools are satisfied that the Hospice is able to support them in delivering individualised programmes. The collaborative working has had a positive impact on the schools and Hospice.
Electronic prescribing & drug ordering in palliative care – patient & healthcare professional benefits
Authors: Bunn Ray , Brayden Patricia
Published: September 2011

St Catherine's Hospice has been ‘paperless’ since 2007 with all clinical notes and communications for hospice and community patients on Crosscare clinical management system (CMS) software (Advanced Health and Care) except the drug prescription and administration record card. The pharmacy has a secure live link to the CMS.

We have now embarked on a project to implement electronic prescribing and drug ordering. The initial stage has been to identify potential benefits.

Key patient benefits of electronic prescribing include:

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Increased safety at the point of prescribing – flags drug interactions, allergies, medicine information (MI) pop ups for drugs as prescribed.

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Handwriting and ‘inky scribbles’ eradicated.

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Dispensing turnaround times reduced.

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Consistent and ‘approved’ MI for healthcare professionals (HCPs) involved in care 24/7 and for patient education.

Key benefits for HCPs include:

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Live up-to-date drug history and current regimen available 24/7 anywhere with web access.

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Education tool – EMIS datasheet pop up PLUS any local practice guidelines pop ups where appropriate.

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Audits facilitated via database interrogation and reporting.

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Major aid for ‘treatment re-capping’ at HCP/patient counselling and consultations.

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‘On call’ remote prescribing enabled eradicating ‘verbal orders’ issues.

Key pharmacy specific benefits include:

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Enables remote prescription monitoring from any PC anywhere with web access. Clinical information conveniently available to pharmacist on screen.

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CDs consistently prescribed legally.

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Electronic stock requisitioning streamlines supply function and management functions such as invoicing and drug use and expenditure analysis.

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Up to date prescriptions, medication history and regimens live in pharmacy.

Having identified numerous benefits, the next phase of the project will entail development of standard operating procedures and education of key staff.
A cooperative participative inquiry into the effectiveness of a bereavement drop-in service
Authors: Nash Seamus
Published: September 2011

Purpose

Starting from a position that users of a hospice based bereavement service reported that the current drop-in was assisting in their coping and movement through grief, a study was undertaken to examine in detail the service users claims and to ascertain what factors led to the drop-in being ‘effective’.

Key concepts

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Cooperative participative inquiry

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Action research

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Phenomenology

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Epistemology

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Relational depth

Methods

A Cooperative Participative Inquiry (CPI) model was used. Heron (1996) and Reason (2001) argue that CPI as a science of the person puts the emphasis on ‘first person’ research and thus locates the participant at the heart of the research inquiry.

Drop-in users volunteered to become co research participants in the research. Ethical approval was sought through the hospice research committee. Four phases were identified-agreeing the area of activity, engagement in the actions agreed, observation and recording of process and outcome, immersion and engagement of experience and finally re-assemblage and discussion of the project in the light of the experience. Results were written up, discussed and agreed.

Results

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As a form of assistance for bereavement support the drop-in was effective

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Peer support was considered vital

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Forming of relationships between users and staff was central to creating a ‘safe space’

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Drop-in was perceived as validating of users experience, non-medicalising of their grief.

Discussion

The research has implications for person-centred care and highlights the continuing medicalisation and pathologising of grief.

Conclusion

Although the process is intense, the results are a testament to the group. User involvement in research in this manner ensures the ‘voice’ of users are heard, that client experiences are accepted and validated and that stigma and pathology are reduced.
Planning and choices towards the end of life – findings from a raising public awareness campaign
Authors: Quinn Sharon , Hickey Deb
Published: September 2011

In response to the National End of Life Care Strategy, and the Dying Matters campaign, the authors ran a raising public awareness campaign from March 2010 to February 2011.

Aim

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Gather public views and raise awareness of end of life care while informing members of the community and providers of health and social care of the opportunities and choices available to those with life-limiting disease.

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Compare knowledge of local views with national findings and use this local knowledge to help inform and underpin the locality end of life care strategy.

A series of public events and road shows were staged, proving a very successful way to engage the public in discussion about death and dying and the importance of identifying future wishes. An End of Life care planning and choice questionnaire was used as a vehicle for this discussion. The questionnaire was also used with a range of health professionals allow some interesting comparisons.

A total of 304 questionnaires have been analysed.

Some of the initial findings include 86% of those who had completed questionnaires had talked to their family and friends, however less than 1% had discussed this with any Healthcare Professional. 60% of people hadn't made a will (53% of the professionals group).

The majority of people felt conversations around these issues should take place either when the person is well or diagnosed with a life-limiting illness but still well, however the majority of conversations still happen when people are very ill. Many eluded to missed opportunities for this to take place when they had had contact with health professionals.

Healthcare professionals should be much more pro-active in starting discussions when people are well and when they are first diagnosed.

The GP was often identified as the prime professional to do this.

Healthcare professionals responded in similar ways to the general public to most questions.
A project to enable tissue donation for research purposes
Authors: Waterhouse Esther , Feathers Luke , Roberts Michael
Published: September 2011

Introduction

When hospice patients asked about organ and tissue donation we had little to offer them, as patients with malignancy are normally limited to donating corneas. This paper describes a project enabling patients to donate tissue for research purposes.

The project

We worked in partnership with our local bone and tissue bank, who have experience in using tissue from both live and deceased donors (eg, bone from patients who have a hip replacement). Our local NHS Research Ethics Committee agreed a proposal to enable patients to donate tissue after their death. Small samples are taken from up to 35 different tissues/organs and these can be used by pharmaceutical companies or research groups, with ethical approval. The project was approved by the Hospice Board of Trustees.

The consent process

During end of life discussions consultants will raise the issue if appropriate. If patients wish to know more, they are given information leaflets describing various donation options, including corneal donation. Consent is taken by a consultant and a senior member of the bone bank. Patients specify which tissues/organs they are happy to have samples taken from. Unlike organ donation, relatives cannot consent on a patient's behalf after death. If the relative withdraws consent after death, then we do not proceed.

Tissue retrieval

After death, the bone bank is informed and makes the arrangements. The body is moved to our hospital mortuary and samples are taken. The body is then restored in appearance and taken to an undertaker of the family's choice within 14 h.

Problems – or lack of them

Patients and their families have been very supportive of the project. One challenge is that the body cannot be moved, nor retrieval take place, until a death certificate has been issued. This potentially limits the project for patients who die at home.
What is good end of life care after stroke?
Authors: Jeffries Clare , Shipman Cathy , Wee Bee
Published: September 2011

Introduction

Stroke is the third commonest cause of death and causes significant symptoms and disability. Acute stroke care in the UK predominantly occurs in hospital. Guidelines recommend that patients should be cared for in stroke units to improve survival and disability.

The End of Life Care (EOLC) Strategy aims to improve care for all irrespective of diagnosis and place of care. Previous research suggests that stroke patients and families have unmet palliative care needs. Researching these needs presents challenges due to the effect of stroke on communication, cognition and consciousness.

Aims

To determine what healthcare professionals on a stroke unit believe constitutes good EOLC for stroke patients.

To determine any barriers exist to implementing good care.

Methods

15 healthcare workers from an acute stroke unit were purposively sampled. Semi-structured interviews were recorded, transcribed and analysed using framework analysis.

Results

Professionals believed the following were important aspects of end of life care:

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Treating patients as individuals

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Providing care in a dignified manner and in a comfortable environment

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Good personal care and symptom control

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Ascertaining the needs and monitoring patients

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Recognising death

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For the team to be aware of the care plan

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Informing families and involving them in decisions

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Facilitating patient communication and patient-family interaction was also valued

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Good team structure, function and training.

Barriers to care included resource and time limitation, competing priorities, difficulties in prognostication and communication and not knowing patients' wishes.

Conclusion

Important aspects of care are identified. Healthcare professionals' views led to recommendations which include:

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Using a care of the dying pathway

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Encouraging patients with capacity to discuss their care needs and wishes

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Discussion of dying patients care at multidisciplinary meetings

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Facilitating patient communication

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Educating stroke team in palliative care and palliative care teams in stroke care

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Research into prognostication is needed.