bluuebunny/crossref_metadata_2025 huggingface dataset:
Motor neuron disease and music therapy – a holistic approach
Authors: Mackinnon Helen
Published: September 2011

This is a case study presentation of working through music therapy with a 66 year-old lady (L)who has been living with motor neuron disease (MND) for 5 years. At the start of the therapy sessions she had already reached the stage of tetra paresis and was increasingly concerned about her deteriorating speech and breathing and felt hopeless as well as helpless.

Searches reveal very little of the potential role of music therapy in MND – this presentation will open up the possibility of working through music in several different ways with people who live with this progressive life-limiting condition.

As a former healthcare professional with 20 years experience of working with people with MND, L is uniquely placed to comment on the benefits of music therapy on all aspects of her life – physiological, psychological, emotional, social and spiritual.

She felt her voice control improved through singing and she was able to reduce night time panic about her breathing by using musical relaxation techniques. L will describe in her own words the subsequent far-reaching effects of the music therapy sessions.

DVD clips and audio recordings will provide evidence of her musical creativity – she had never composed music before but over a 6 month period was able to write a significant amount of choral music. The initial motivation was to leave a legacy for the family at her funeral – what resulted was a joyful service of thanksgiving with her family and friends in which everyone heard the beautiful music she had written.

Through her powerful and moving testimony in words and music she shows how someone living with a condition that often seems overwhelmingly hopeless can experience great joy and creativity and reclaim a sense of purpose and achievement.
Care quality commission compliance and frequently asked questions
Authors: Ruthven Tracy , Blackburn Maddie , Ellis Jonathan
Published: September 2011

As part of the Department of Health initiative – £30 million funding for children's palliative care in 2010/11, Children's Hospices UK successfully submitted a proposal with Help the Hospices relating to Care Quality Commission (CQC) registration and compliance with the statutory Essential Standards of Quality and Safety.

The project ran between December 2010 and March 2011 developing guidance and best practice examples for hospice services in England.

The project assisted children's and adult hospice services by providing information to:

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Inform future development and planning of services to ensure best practice

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Identify current services and gaps in current compliance

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Work with our partner ‘Help the Hospices’ to share project outputs and support the transition agenda between children's and adult services.

The project required a mixed methodology to ensure effective delivery of the project objectives. Methodologies employed included an online questionnaire, stakeholder visits and interviews, delivery of three educational workshops, academic review of compliance techniques and partnership working with stakeholders to complete exemplar compliance assessments.

The project enabled a number of outputs and analysis and these were shared with member organisations via the extranet services of both Children's Hospices UK and Help the Hospices.

Outputs included:

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Establishment of information relating to registered activities across hospice services

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Provision of educational workshops led by the CQC in relation to compliance, inspection and the Judgement Framework

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The development of a ‘Compliance Toolkit’ providing information and advice relating to meeting the Essential Standards including exemplar compliance assessments

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Partnership with ‘Help the Hospices’ to further improve transition for life limited young people by understanding the population of children and young people with palliative care needs who will be moving to adult services.

The presentation will focus on some of the learning from this joint venture and consider next steps.
Sharing clinical audit
Authors: Skilton Carolyn
Published: September 2011

Introduction

Clinical audit is a cyclical process that forms part of clinical governance and determines whether national standards are met and changes in practice have improved outcomes.

An audit group was established in 2008, to encourage healthcare professionals to undertake audits of practice, but there were a number of challenges:

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How to go from collecting the data to disseminating it and making it add value to day to day clinical practice?

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How to inspire others to undertake audits?

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How to share the results in an informative and constructive way?

Aim

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To ensure that hospice clinical audit results and recommendations were shared to as many healthcare professionals as possible to inform clinical practice

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To inspire others to undertake audits and embed it as part of day to day activities.

Method

A structured audit feedback meeting is held quarterly, open to all staff, volunteers and external healthcare professionals.

Following the feedback meeting a leaflet is designed and distributed to illustrate the presentation and actions to take forward.

Results

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Four feedback sessions have been held with an average of 4 audits being presented at each

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Feedback sessions are lively and well attended

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The results of audit are widely spread throughout the hospice • Clinicians understand the audit process better

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The number of audits has increased

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Improvements to patient care have been identified in:

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Management plans in Hospice @ Home respite care

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Improvement in documenting psychosocial information on the inpatient unit (IPU)

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Identifying trends in patient falls.

Conclusion

Audit feedback sessions and leaflets have had a positive effect on clinician's understanding of the audit process and favourable outcomes in regard to their willingness to complete them, thus fulfiling one aspect of clinical governance while improving standards and patient care.
Prebereavement assessment: identifying vulnerability and resilience in parents of children with a life-limiting condition
Authors: Hopper Liz , Bennett Helen
Published: September 2011

Introduction

Understanding the ways parents cope with grief prebereavement is as important in the bereavement care pathway as how they may cope after death. Within a framework of practice development the authors identified, modified and piloted the Adult Attitude to Grief Scale (AAG) (Machin 2001) to assess how families were coping prebereavement.

Aims

The aim of using the assessment tool was to enable parents to tell their story and to recognise and further understand their grief experience prebereavement; to identify what kind of support might be offered so that resources could be targeted more appropriately.

Method

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Literature review

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Survey of children's hospices

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Reflective diaries

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Action learning groups within a framework of practice development to identify and modify the AAG scale

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An initial pilot with 40 families

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Evaluation to determine the ongoing integration of the tool in practice.

Results

The assessment revealed a therapeutic value that enabled individuals to tell their story and parents reported a sense of being understood. Findings indicated those individuals who required additional support which helped in the management and provision of services.

Discussion

The pilot revealed two important dimensions:

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The impact on the organisation in relation to service procedures – this included implementing the tool in practice as well as the professional development of staff.

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The assessment process encouraged a stronger therapeutic engagement with parents.

Conclusion

The modified AAG scale when used with parents can add significant information in understanding their grief experience prebereavement. The assessment alongside clinical judgement has enabled the identification of possible vulnerability as well as resilience, which can enable healthcare professionals to support families appropriately and target resources effectively.
User involvement in establishing a new young people's hospice
Authors: Kipling Ray , Amos Vicky , Goldsmith Julia
Published: September 2011

We propose that this presentation will involve life limited young people who have shaped a new hospice service for teenagers and young adults.

Transition from children's to adult services is much discussed, little understood and poorly supported. It poses a set of unique challenges for life limited young people.

Prime among these is the sharp discontinuity, described by many as like “falling off a cliff”. The aim of the consultations was to shape a new service was to provide stability and continuity while facilitating transition across external health and social services.

By engaging user groups in a series of semi structured discussions, their needs were better understood and a new hospice service was established to support them. Each themed discussion had a facilitator. The format was kept loose to allow subjects to emerge that were important to the young people. In addition to focus groups of communicative users, carers were consulted on behalf of non-communicators, and there was a joint carer/young person session.

The results were that information was gathered on both physical and emotional needs. Three themes emerged; independence, dignity and privacy. In some areas, the young people's views were at odds with other stakeholders, such as parents/cares and care professionals. It became apparent that young people's aspirations are often drowned out by carers and professionals.

Because the new hospice was founded on user involvement, it now provides a safe space for honest and open discussions. As trust is built, more profound subjects, such as relationships with peers and parents, advance care plans, death of friends and anxiety about sharing bad news, are being brought out.

The best source of information for shaping young people's service is the young people themselves. Developing best practice, based on both their hopes and needs is a rewarding journey for all concerned
How effective is our telephone triage service at providing specialist palliative care?
Authors: Stananought Nicola , Sutherland Jane
Published: September 2011

Introduction

In 2006, we enhanced our specialist telephone triage service to keep pace with the increasing demands of providing accessible specialist palliative care to all with life limiting illness. Early statistical analysis revealed that the service was invaluable in coping with increased demand but were telephone triage patients receiving an effective service? In August 2010, a retrospective caseload analysis was undertaken to establish this point.

Aims

To determine the ability of the telephone triage service to reduce patient STAS (Support Team Assessment Schedule, Higginson 1993) scores or to refer on appropriately. To compare results with the community team's ability to reduce patient STAS scores. To highlight trends in types of care provided for patients managed by the telephone triage service.

Methods

The telephone triage service uses an adapted version of the Support Team Assessment Schedule tool to assess patients. 50 randomly chosen patients were recruited, with at least one problem scoring STAS 3 or above at triage first contact telephone assessment. Analysis of STAS scores was undertaken at subsequent contacts, along with referral patterns and time lapses between contacts.

Results

At the second telephone triage contact, the number of problems scoring STAS 3 or above had reduced by 60%. A third telephone contact reduced the number scoring STAS 3 or above even further. Outcome scores for the community team were very similar.

Conclusion

The very nature of palliative care means that as initial STAS scores are reduced, new and often more complex problems develop. However, results clearly demonstrate that our telephone triage service is effective in palliating symptoms. Introducing telephone triage into our service has successfully reduced our waiting lists by providing a flexible, responsive service appropriate to need. We are now able to confidently evidence the effectiveness of this service in terms of providing high quality specialist palliative care.
Online education toolkit for members of National Association of Palliative Care Educators
Authors: Becker Bob , Moss Bridget
Published: September 2011

Aim

To harness the vast range of knowledge, experience and skills implicit within the membership of NAPCE and publish on the website in an acceptable format so that a toolkit of education resources is created, available to NAPCE members only as a direct benefit for membership. The toolkit will be of interest to anyone working in palliative and end of life care. Teaching and learning is at the heart of many roles and colleagues would benefit from being able to access resources from other educators.

Purpose

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Support and disseminate good practice

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Provide readily available and resources in a wide range of topical areas in a ‘one stop shop’.

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Promote ideas for future development of education resources

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All resources will be regularly updated and checked for accuracy and

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copyright acknowledged where appropriate.

How

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The structure of the toolkit and the core information will be published on the new NAPCE website in Spring 2011

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NAPCE members requested to submit their resources electronically to a published email address

These are then reviewed for:

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Content – Suitability for publication

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Classification – what category the material goes into

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Clarity – scanned documents, pictures and other material

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Copyright – all authors are acknowledged appropriately.

Resources are then uploaded to the identified website sections in an agreed format.

Why do?

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It fits with the constitution of NAPCE

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And also with the End of Life Care Strategy, -promotion of quality education for health and social care professionals

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No such resource exists either online or in hard copy

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No other organisation has taken this on nor would they be in a position to do so

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It promotes NAPCE's name and provides a tangible benefit for the membership

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The details of the content and process, as well as the benefits would be expanded if submission successful.
The gold standards framework: an audit of local practice from a hospice perspective
Authors: Palmer Zoe , Brayden Patricia
Published: September 2011

The Gold Standards Framework (GSF), developed in 2000, has been an important resource designed to strengthen the organisation and quality of primary palliative care. The aim of this audit was to gather information (from the hospice perspective) about the extent to which local General Practices were meeting GSF standards. Structured interviews (based on a PCT questionnaire that had been designed to examine the levels to which practices had implemented the GSF) were undertaken with the hospice community clinical nurse specialists. Results showed that locally the majority of practices appeared to have adopted basic GSF standards, with 53 of 58 practices holding palliative care meetings and 45 practices maintaining a palliative care register. However a third of practices held GSF meetings less frequently than every 6 weeks. Given the frailty and changeability of the palliative care population, meetings held this infrequently are less likely to be effective for monitoring patients or planning care.

Adoption of higher levels of GSF was more variable. The majority of practices needed prompting to send clinical information to the out of hours service did not use significant event analysis of palliative care patients as a learning tool and recorded data inconsistently on the palliative care register.

Key challenges identified from this study are:

Maintaining the current level of engagement with palliative care

Ensuring that palliative care meetings and palliative care registers are used effectively to enhance the quality of patient care

Engaging GP practices who are not using the GSF

Supporting those who are using the basic level of progress to intermediate and advanced levels

Promoting the GSF for a wider range of non-cancer conditions.
Professional user views of a specialist palliative care service
Authors: Senior Management Team
Published: September 2011

Introduction

The End of Life Care Strategy promotes a whole systems approach to care at the end of life. Following significant service changes (including an increase in catchment area due to the closure of another local provider, and the introduction of 7/7 working and ‘hands-on’ nursing care in the community) since 2009 St Catherine's Hospice conducted a professional users' survey in early 2011.

19 health and social care professionals (a mix of doctors (mostly GPs), nurses, therapists and a spiritual leader) who work across the geographical area where St Catherine's Hospice provide specialist palliative care participated in semi-structured telephone interviews.

The survey focused on the working relationship with the hospice, and any suggestions for improvement or future development.

Discussion

Participants viewed the overall experience of working with the hospice as positive and the service was considered to enhance care for people at the end of their lives both through direct care provided and by supporting other professionals.

Participants cited the introduction of hands-on nursing as particularly positive – enabling increased shared care between NHS providers and the hospice. Communication with and response from the hospice were generally reported to be good particularly in urgent situations although some areas for improvement were noted. Those who had worked with the previous provider, reported that they had been anxious about St Catherine's taking over the service but their anxieties had not been realised.

There was no apparent dissimilarity between the views of different professional groups and all seemed to be very willing to extend and build on opportunities for working together. There were varying on views on the role of the hospice – and of other professionals – in providing more ‘generalist’ end of life care.

Many recommendations emerged for further exploration and action and these will be highlighted in the presentation.
Day hospice audit to establish a baseline prior to piloting the preferred priorities for care document
Authors: Douglas Denise , John Kate , Skinner Katy
Published: September 2011

In 2010 a baseline audit was conducted to establish what proportion of Day Hospice patients were aware of, had discussed or had completed a Preferred Priorities for Care document (PPC). The audit was done in preparation for piloting the PPC, as a tool for advance care planning. The aim of the audit and piloting of the document was that all Day Hospice patients within the last 12 months of life (GSF) would have been offered a PPC document as part of their advance care planning. This was in support of the recommendations from the End of Life Care Strategy 2008.

The methodology used was a retrospective audit of the patient notes documentation and Day Hospice patient interviews to identify relevant information with regard to advance care planning. The audit was repeated 3 months later.

The audits clearly demonstrated that Day Hospice does provide an excellent opportunity to discuss and give information about advance care planning. However, the audit demonstrates that most patients appear to prefer to complete a PPC document at home with assistance from either a family member or Healthcare professional. It also identified that staff needed to have an increased familiarity with the document and in initiating the conversations.

Practice change resulting from the audit relate to a need to continue to raising staff and patient awareness every 3 months and to develop a patient information leaflet outlining choices for advance care planning, which is to be inserted in all new patient notes to promote discussion.

All these changes have now been implemented. Empirical evidence suggests that the audit process has been highly successful in facilitating change through team involvement. A repeat audit will be conducted to provide hard evidence of that success.
To explore the factors influencing whether GPs sign the DNAR order as part of the LCP
Authors: Chew Robert , Forbes Karen
Published: September 2011

Background

End of life care is currently a government and national priority. The Liverpool Care Pathway for the Dying Patient (LCP) is an evidence-based multiprofessional document which aims to optimise end of life care. In May 2006 the LCP was introduced into a primary care locality within a London PCT. An audit carried out on the first 20 patients to be placed on the LCP noted that the ‘do not attempt resuscitation’ (DNAR) order had been signed by their general practitioner (GP) in only seven out of the 20 patients.

Aims and objectives

To explore the factors influencing whether GPs sign the DNAR order of the LCP. To explore what helps or hinders GPs to sign DNAR orders and to propose actions facilitating completion of such orders.

Method

Semi-structured interviews with seven GPs and four nurses were carried out between April 2008 and September 2008. Grounded theory analysis was used.

Results

The LCP is a nurse led process in the primary care setting that was studied. Facilitatory factors for obtaining a signed DNAR order were a multiprofessional approach to the care of palliative care patients, a good working relationship between GP and district nurse, the GP and district nurse working from the same premises and district nurse confidence in commencing the LCP. Inhibitory factors were initial GP ambivalence towards the LCP, ambivalence of the district nurse to completing the LCP process, difficulties with accessing a GP to sign the DNAR order and commencing the LCP out of hours.

Conclusions

The study demonstrates the importance of a co-ordinated multi-professional approach to achieve a signed DNAR order of the LCP. It highlights the need for the on-going education of healthcare professionals on end of life issues.
Privacy and dignity in a hospice environment – the development of a clinical audit
Authors: Gerry Edwina
Published: September 2011

Introduction

Privacy and dignity are important aspects of the patient experience and are central to the philosophy of hospice care.

Aim

To provide evidence of the standards of privacy and dignity afforded to patients in the wards and Day Hospice.

Method

A review of key currents documents and an internet search of appropriate audits was undertaken to identify best practice for delivering care that provides privacy and dignity. Following discussion with clinical colleagues and with patients and carers in their respective forums, the following standards were developed.

All patients admitted to the In-Patient Unit and Day Hospice should receive care that

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Respects their personal space

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Respects their modesty

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Protects their self- respect

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Maintains good communication

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Protects their confidentiality.

Questionnaires, using Likert scales, were devised for patients and different groups of staff – medical, nursing, allied health professionals, spiritual care team, catering and housekeeping teams. These were given to 30 patients and 130 members of the multi-disciplinary team.

Results

The response rates were 91% (patients) and 78% (staff). Evaluation of the questionnaires showed that 70% of patients rated their satisfaction with privacy and dignity as “excellent” with the remaining 30% rating it “very good”. For the most part, the ratings of staff and patients were in agreement and indicated achievement of the expected standard.

Discussion

Despite the good results there were some areas of concern identified. These included ensuring that hand washing was available for dependent patients prior to meals, closer monitoring of visitor numbers, avoiding interruptions to staff when with patients and maintaining privacy during conversations with staff. Important discussion took place within the teams regarding issues raised in the audit.

Conclusion

An action plan was formulated to address the concerns and re-audit is planned for later in the year.
A new model for breaking bad news to people with learning disabilities
Authors: Tuffrey-Wijne Irene , Giatras Nikoletta , Butler Gary , Cresswell Amanda
Published: September 2011

Background

Current models for breaking bad news are inadequate in meeting the needs of people with learning disabilities (LD). People with LD are often not told of a life-limiting diagnosis. The task of breaking bad news is often left to carers who are poorly prepared and supported to cope with this. Healthcare professionals don't know how to communicate adequately with people with LD.

A new model for breaking bad news to people with LD

The model was developed following a focus group/interview study involving 96 participants, including people with LD, family carers, LD professionals and healthcare professionals (see related abstract for oral presentation). The findings were combined with the literature. A preliminary model was developed; 60 stakeholders gave feedback on this, including a wide range of family carers, professionals and academics. The preliminary model was modified following this feedback.

The poster will present the model in a visual format. The model has four components.

BUILDING A FOUNDATION OF KNOWLEDGE is central to the model. Gradually and over time, the person with learning disabilities builds his/her understanding of the way his/her situation is changing because of the bad news. The people around him/her help with this, by giving small, singular chunks of information that make sense to the person. This does not have to done by talking: much of the information will be understood through experience.

The other three components must be considered throughout:

CAPACITY AND UNDERSTANDING, taking account of the Mental Capacity Act

PEOPLE INVOLVED, including family, partners, friends, paid carers and professionals

SUPPORT NEEDED by everyone involved, including information, emotional, social, practical and spiritual support.

The model now needs to be tested in practice.
Development of an integrated model for earlier identification and provision of palliative care for patients of all diagnoses
Authors: Daniels Charles , Dancy Mark , Donovan Temo , Alimo Audrey , Smith David , Berry Lauren
Published: September 2011

Introduction

The National EOLC Strategy seeks to improve access to high quality palliation for patients of all diagnoses. One such group for which this is difficult is advanced heart failure.

Aim

To use auspices of NHS Improvement to develop cross organisational integrated pathway for advanced heart failure (HF) to ensure better end of life care (EOL).

Results

A. Retrospective audit identified 26 deceased patients known to the heart failure nurses. The majority had no EOL discussions or specialist palliative care and died in hospital. Most had multiple admissions with average length of stay of 31 days in last year of life.

B. Key stakeholders were brought together to develop a new pathway and tools which facilitated patient choice, addressed symptom management and anticipatory care planning.

C. Tools include

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Tools for HF nurses

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Patient and Carer assessment tool

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‘Trigger Tool’ to identify patients who are a ‘cause for concern’. Creates gateway for appropriate joint management between cardiology and SPC services.

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Aide memoire for action following identification of patients

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Home management folder.

D. Key features of pathway

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Monthly advanced heart failure forum. Enables hospital /community heart failure nurses to discuss patients identified as ‘cause for concern’ with cardiologists and agree CLEAR action plan. Palliative care input to forum is planned

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Bi-monthly meetings between palliative care nurses and community HF nurses

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Joint Heart Failure clinic.

E. Re-audit revealed

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Increased use of specialist palliative care services, for example, homecare, day care, hospice and hospice at home

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Increased EoL discussions with HF nurses

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Increase in documented preferred place of care and achievement of death in PPC

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Reduced hospital deaths.

Conclusion

Cross organisational work can develop shared pathways, tools and training which improve care for end stage HF and improve skills of HF nurses.
Supporting end of life care delivery: an inclusive approach
Authors: Lawley Liz , Talbot Judith , Franke Deirdre
Published: September 2011

In line with the Hospice movement's key role in promoting the Liverpool Care Pathway (LCP) across health and social care settings, quarterly link nurse meetings involving care home, community nursing and hospital staff were developed by the Hospice LCP team in 2008. These have been successful in engaging staff from a range of settings, with a current membership of approximately 60.

The benefits of the LCP are well documented. However, the challenges of delivering any aspect of end of life (EOL) care requiring co-operation across social and healthcare settings has also been recognised, particularly in terms of the support needed by care home staff. Assumptions can be made about the impact of the group in meeting these support needs. However, as the Hospice education team look to deliver a more comprehensive EOL programme and to expand the remit of the group to reflect this, understanding representatives' perceptions of the group and its future direction seemed important to ensure ongoing engagement.

Questionnaires, using Likert scale and open questions to capture participants' perspectives on different aspects of the group's activities and on expanding the its remit, were e mailed to all representatives.

A response rate of 63% (n=38) was achieved. Responses are still being analysed but there is emerging evidence of the value placed, particularly by care home staff, on the opportunity to meet with those working in other settings and of perceived educational needs if taking on a wider EOL role.

Both the ongoing commitment of the group and the early results of this survey support previous work highlighting the importance of strong cross sector relationships (3,4).

When finalised, the Hospice education team will feedback to the link and EOL steering groups to inform the future direction of the link group and education initiatives.
Doing the right thing at the right time
Authors: Dee Joan
Published: September 2011

Introduction

In order to improve the care of patients and their families when the patient is dying it is helpful to implement the Liverpool Care Pathway for the Dying. It therefore is necessary to identified them in a timely fashion. Previous studies suggest that physicians tend to be overly optimistic when attempting to predict survival.

Objective

To identify factors that clinicians consider when a patient is dying,

enabling implementation of the Liverpool Care Pathway.

Method

A phenomenological study using semi-structured interviews (n = five nurses and five doctors) conducted on a hospice inpatient unit.

Results

There was a prominent theme of anxiety about getting the timing of diagnosing dying right and how the dying patient and their families would cope if this were the case. The factors that influenced the clinician's decision to implement the LCP were: support for decision making, understanding the patient's journey and concern that the care given is appropriate. It also appears that most of the factors that help are the mirror images of those that hinder the process of deciding when the pathway should be implemented. The theme remains the same but the meaning as to whether it helps the clinician to decide if a patient is dying or not changes.

Conclusions

All clinicians interviewed for this study had concerns about increasing the patient's or carers' distress if LCP implementation was mistimed; there is a risk that clinicians are avoiding difficult conversations with family members and there may be a lack of understanding around the reasons for it's use. Specific communications training may help to prepare clinicians for this role.
Hospice neighbours
Authors: Page Emma
Published: September 2011

Everyone needs good neighbours – developing a Hospice Neighbours Scheme

Introduction

This is an innovative, volunteer-led scheme created to help people (and their families) who are coming to the end of their lives with practical everyday tasks as well as support in the last days of life.

Aims

To provide practical support to these people, this can include collecting prescriptions, taking the dog for a walk or simply providing companionship.

Hospice Neighbours will enable support earlier in diagnosis, no matter what this is. It will be more proactive way of working, relieving pressure in the earlier stages of illness which will help make later stages easier. This will ease demands on both hospice services and other care agencies.

Methods

employed so far have been to:

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Recruit, train and develop teams of neighbours

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Recruit a volunteer coordinator responsible for assessing patient's needs and matching them to a neighbour.

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Record all neighbour activity and obtain feedback from the service users.

Results so far

Some requests for someone to help with:

Walking, to help regain their confidence post chemotherapy treatment. A Hospice Neighbour now visits fortnightly to provide companionship.

Gardening, which due to illness he is no longer able to tend. A Hospice Neighbour visited regularly to help with shopping and to keep the garden tidy.

Daily tasks as cancer affected his right arm. A Hospice Neighbour visited weekly to help with cleaning and writing letters.

Discussion and conclusion

Early indication from the pilot areas is that the scheme has potential to make a significant difference to patients and families in local communities. As it became an integral part of hospice community service it will helped to extend choice for those who would prefer to stay at home.
Beyond talking therapy: diverse bereavement support
Authors: Prrot Catherine
Published: September 2011

Introduction

The purpose of this project was to provide a more comprehensive, inclusive bereavement service to the local community.

Aims were to

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Empower and enable resilience in diverse ways

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Offer less threatening support to those not choosing one to one counselling

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Offer a social / activity-based alternative for people who develop attachment to hospice-based services

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Explore partnerships with other providers, reducing duplication and giving clarification

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Integrate Bereavement Needs Assessment (BNA) research findings.

Methods

The bereavement service, in its routine evaluation and consultation from our Service User advisory group, confirmed a need for greater diversity in its methods. This led to the ‘traditional’ bereavement groups being supplemented by cookery, home maintenance classes, walking and creative activity, as well as with drop-in facilities.

Results

The new groups started successfully, with interest and satisfaction from those using it.

Agreement has been reached with other providers to explore the potential for collaboration and partnership in providing a one stop bereavement service: a joint event is now at the planning stage.

Discussion

It is often more vulnerable people who find it harder to use traditional bereavement services and this project will continue to broaden those accessing it. Success also needs to be measured by evidence that people are accessing the right kind of support for themselves.

Conclusion

Early signs are that individual need is being appropriately met through the offer of more diverse forms of support and that potential partners are interested in exploring the benefits of collaboration.
Collaboration online
Authors: Gale Barbara
Published: September 2011

Hospices face the challenge of managing small and large projects, from developing a new service to a refurbishment or new build. An online system enables people to collaborate and share ideas and documents, quickly and easily.

Without an online system, people rely on meetings, minutes and email; often sending or printing large files with the difficulty of managing different versions.

This hospice has successfully used an online project collaboration product called Basecamp. There are now many similar products: Zoho, Glasscubes, Huddle and Manymoon; some offer charitable pricing and can integrate with Google Apps.

Features include:

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Storage of documents, spreadsheets, pictures, PDFs

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Message threads

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Action lists with allocated tasks

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Calendar and milestones

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Timesheets and Gantt charts

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Access by external contractors

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Collaborate on writing a document.

The systems are easy to use and often have video tutorials for new users. The Hospice found that their refurbishment project was completed on time and within budget, decisions and discussions with the architect could happen easily and quickly, without the need for extra meetings.

Other collaboration tools include Google Apps, where documents and spreadsheets can be shared and even worked on at the same time. Applications include email, calendar, sites (intranet), all hosted by Google, held securely accessed from anywhere with internet access including mobile.

Many companies are converting to Google Apps – Jaguar Land Rover, Rentokil, Sue Ryder. Google Apps is provided free to non-profit in the USA and plans to offer the same in the UK, but the date for this has not yet been confirmed.

With increasing numbers of staff needing remote access to documents, online applications can offer greater storage space, effective collaboration, better reliability and improved efficiency.
Hearing voices: sounds great!
Authors: Saunders Jacqueline
Published: September 2011

Introduction

Over recent years the Hospice has invested significantly in developing a range of means whereby people who use our services and provide the services can influence strategy, change practice and cast opinions into management decision making and clinical practice.

Aims

To be an organisation which genuinely listens to its people, enshrining the concept of a community of care and caring for the community of patients, families and carers.

Methods

implemented so far include:

The Service User Forum developing into the Advisory Group involved in:

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Senior appointments – Chaplain, CEO, Ward Sister

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Patient client information material

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The organisation's website strategy

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Design, application and interpretation of patient and family Satisfaction Survey (actually undertaken by members of the Service User Forum)

▶

Fundraising and marketing methods

A Staff Forum being set up:

▶

Regular meetings with C.E.O. and Directors to express concerns and formulate solutions.

Regular Staff Satisfaction Surveys:

▶

Using the Times methodology generating depth and breadth of data, now used for three consecutive years.

Staff briefings:

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CEO gives regular briefings to all staff and volunteers about all aspects of the Hospice.

Discussion

It is now expected practice to integrate peoples' voices (opinions) into planning, delivery and evaluation of all domains of the Hospice.

Conclusion

The Hospice feels a better place to work – a ‘listening’ and consultative approach. Patients and bereaved relatives meeting quarterly with an independent facilitator ‘say it as it is’ – real partnership.
How to get 50 positive press stories on your hospice a month
Authors: Jeffery Yasmin
Published: September 2011

Introduction

Working effectively with the press can improve local understanding of the work of the hospice and its need for donations.

“Market the hospice more” was one of the first things asked of the marketing department; it was felt that many local people did not understand the work of the hospice or its need for donations.

Aims

This paper explains how we have maximised the use of newspapers to achieve this. Success also depends on the cooperation of staff and the press.

Methods

Staff first

Make sure everyone is aware of the need to access patient/family stories – staff and volunteers are walking newspapers. Explain what a good story is and flag up recent coverage - ‘have you seen our article in the Mercury’ and display it throughout the hospice. Distribute ‘have you a story’ cards for patients, visitors and staff to help break the ice.

The media

Implement a media strategy, monitor all local press; and ensure you have a functional press office. Organise public open events, invite all media, make sure the press see all new publications and always send an invitation to visit.

Get to know your editors – understand what they want and send through weekly stories and pictures that are topical, well timed and well written. Supply a mixture of fundraising and clinical stories.

Hospice stories can help sell newspapers; the hospice has a huge following which could drive up sales.

Offer exclusives and ‘page ready’ copy and negotiate media partnerships for flagship events.

Conclusion

Our profile has increased significantly. More people know what we do, why we do it and want to support us.

Regular and positive newspaper coverage opens the doors to the Hospice, and supports fundraising and patient and family care.
An audit of the advice given to GPs by hospice community nurse specialists regarding step 3 opioids
Authors: Mundy Caroline , Versaci Katie
Published: September 2011

Introduction

The Gold Standards Framework state part of the nurse specialist's role is to ensure early and effective symptom control. Opioid advice is commonly given. Advice should be both correct, evidence based and documentation accurate.

Aims

To establish the accuracy of advice given about step 3 opiates, noting if documentation was completed, and whether the advice was supported in writing to the prescriber.

Methods

17 CNS answered a questionnaire for every patient they visited either on or starting on opiates. First visits were excluded. Identification was made of those who had a change recommended. Data was collected retrospectively from the patient's records regarding advice given and its documentation. 49 sets of data were analysed using an interpretive approach.

Results

100% appropriate interval and route for regular and breakthrough opioid prescribed. 88% (n=43) taking as prescribed. 78% (n=38) on correct breakthrough dose. 93% (n=46) understood breakthrough medication could be repeated after an hour if pain remained poorly controlled. 100% (n=9) opioid switch doses were accurately calculated. 89% (n=27) recorded indication for advice given in patient records. 50% (n=27) communicated written advice to GP. 86% (n=21) ensured timing maintained analgesia. Discussion The results were consistent with the aim of the audit, showing that the advice given is accurate, but that documentation and written communication to GP's is weak. A pro forma letter has been developed to assist in standardising advice.

Conclusion

This audit has shown the need for clearly defined standards for documentation of rationale for advice and written communication to GPs. This is hugely relevant for community based specialist nurses who give medication advice on such a regular basis and is noted as a clinical governance issue.
We're living well, but dying matters
Authors: Austin Bradshaw , Joanna Black
Published: September 2011

Introduction

This innovative and ground breaking DVD will help people with learning disabilities become more comfortable around talking about dying.

People with learning disabilities are often marginalised and excluded from conversations about their own and others' wishes around dying, death and bereavement and this can cause great pain and anger. We want to change this.

Aims

The DVD aims to:

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Demonstrate that people with learning disabilities can be fully involved in talking about dying, understanding choice and planning for things during their life.

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Inspire other people with learning disabilities to make their choices and preferences clear about issues around dying, death and bereavement.

Methods

The DVD includes the views, ideas and hopes of people with a learning disability, and other people involved in their lives. The project team devised games and exercises focused on “Things to do before you die” and “Things you want to be remembered for”.

Filming and editing were carried out by a community based company, and the whole team worked together to produce the final version.

Results

People with learning disabilities responded magnificently to this opportunity to engage in discussions and voice their own wishes. It demonstrates the huge potential for such a resource to be used by people with learning disabilities on their own, or with others as a prompt for conversations.

Discussion

The attempts by individuals and organisations to be “gatekeepers” and protect their clients from getting involved in this project highlighted the need for it.

Conclusion

This film demonstrates that people with learning disabilities can be fully involved in discussions about dying, death and bereavement. We hope it will be widely to ensure that people with learning disabilities can live well to the very end of their lives.
Developing support for carers in the context of the community
Authors: Dutfield Michael
Published: September 2011

We started a Carers Group 4 years ago with a grant from Help the Hospices and quickly realised that we needed to develop a perspective of all the other services that are, or should be, available in the local community.

We developed the activities of the Carers Group in parallel with developing our relationships with voluntary and statutory organisations. Those organisations were also becoming more aware of the needs of carers, committing themselves to a County wide carers Strategy.

We have developed an ethos that ensures that carers feel cared for emotionally and practically, giving them the opportunity to shape activities to meet their needs. The Hospice role has been interpreted narrowly, caring for the dying, mostly cancer patients, in the community. We needed to create strong professional relationships with a wide range of voluntary services as well with the County carers support services and with the NHS. We also recognised that many carers as well as hospice staff were unaware of the support available from libraries, education, housing services, the Red Cross, and particularly Citizens Advice Bureau. Using a range of methods we have built relationships with these and other bodies.

The group has been continuously monitored and reviewed by an internal management group and by a steering group including external stakeholders with relevant perspectives. This is an invaluable source of information as well as providing an informed critique of the group's activities.

Over time, using publicity, attending and setting up local activities and taking part in training, the Carers Group has become recognised as specialising in the support of end of life caring but a significant part of carers support locally. As those relationships have developed Carers Group members are receiving an improved service not only from the Carers Group itself but also through accessing many other available services.