bluuebunny/crossref_metadata_2025 huggingface dataset:
Supporting the setting up of a tertiary palliative care service. Positive reflections on reaching out
Authors: Midgley Corinna , Hafeez Haroon
Published: September 2011

In 2008 a new Consultant in Internal Medicine was appointed to a busy cancer centre in Pakistan. He found himself providing predominantly palliative care, alongside a skilled but small palliative nurse team. This was recognised. He was made Consultant Lead for Palliative Care, and supported to enrol on a UK Diploma course and to do a 6 week locum registrar spell in a UK hospice for professional development.

The relationships forged led him to request continued connecting with the hospice Consultant, through SKYPE, for 1 h per month once back in Pakistan. This to allow reflection on complex cases, as he had no Consultant to do this with.

We started connecting 2 years ago, achieving 10 × 1 h sessions annually, discussing 1–2 cases each time. The palliative care team in Pakistan contributed, and an educationalist/Nurse joined the Consultant in the UK hospice.

For Pakistan it has been so useful to discuss difficult symptom control and emotional challenges with an experienced physician, with, over time, real gains in patient, family and staff support. Sharing of working policies has been invaluable. Our connection has helped powerful lobbying to politicians regarding controlled drugs access, and armoury for Consultant and team to pursue initiatives like the Liverpool Care Pathway.

For the UK we have seen our Pakistan colleagues overcoming huge practical challenges, particularly in support of people at home, often involving intense family support in care delivery. We have been impressed by the willingness of the wider hospital team to work together, quickly, towards best comfort care. These things have enhanced our UK care: we are more including of families, and understand more those we care for with international connections. We recommend this as an affordable, manageable and rewarding way to support international palliative care development and build educational and supportive links across services.
Co-ordinating care: a clinicians tale
Authors: Johnson Bronia , Smith Wendy
Published: September 2011

Introduction

The Palliative Care Co-ordination Centre (PCCC) was first devised as part of the Marie Curie Cancer Care ‘Delivering Choice Programme’ acting as an administrative centre to book packages of care on a first come, first served basis of care for palliative care patients. In August 2010 clinical leads were introduced into the centre.

Aims

To provide a central point of communication for clinicians, working with the referring clinicians to ensure that care is prioritised and co-ordinated. To ensure patients receive the most appropriate level of care. To support patient choice at the end of life by facilitating discharge from hospital and reducing inappropriate admissions.

Method

Introduction of clinical staff with palliative care and community nursing experience. Extended working; opening at weekends.

Access to SystmOne patient records, the palliative care template and introduction of a county-wide prioritisation tool.

Results

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Clear discussion regarding patient needs and priority between referring clinician and PCCC team – care based on need not first come, first served.

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Patients' care packages are routinely prioritised resulting in complex patients receiving the majority of their care from dedicated palliative care providers.

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Reallocation of care to support unmet need / reprioritisation of patient care supporting patient and their family and carers at home.

Discussion

The introduction of clinical staff has enabled patient need and priority to be matched to the appropriate care and has released resources and reduced unmet need.

This has supported both speedier discharge from and prevented unnecessary admission to hospital.

It has also highlighted issues with the current systems and barrier to the effective use of Continuing Healthcare.

Conclusion

The introduction of clincians has been a positive investment; the issues highlighted need to be addressed to further improve outcomes for patients and their families.
The responsive needs tool – unlocking communication of end of life care needs
Authors: Johnson Bronia , Ball Barbara , Bake Jane
Published: September 2011

Introduction

The Lincolnshire Home Deaths Project Group brought together organisations from across the county to develop new ways of working that were patient focused and to ensure that end of life services dovetailed. This included a night care pilot which identified the need for an assessment and communication tool endorsed by the health and social care community to enable the needs led prioritisation of resource in end of life care.

Aims

To enable clear, accurate and effective communication of need across organisations to support the allocation and re-allocation of available night care resources for patients at the end of life based on their clinical need.

Method

The ‘responsive need’ tool was devised by members of the group using the work of two organisations, St Barnabas Lincolnshire Hospice and Marie Curie Cancer Care and the Gold Standards Framework prognostic indicators as a resource.

Results

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The tool has become the common ‘currency’ of Communication County wide and is incorporated into SystmOne palliative care template.

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It has enabled the provision of End of life care according to need, and stopped unmet need for complex patients in the pilot area.

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Given clinicians confidence that the care will be there when the patient needs it; releasing care and supporting new ways of working.

Discussion

This tool has given us a shared language and supported the clinician in their decision making. It has enabled us to achieve the aim of allocating care on the basis of need and urgency.

Conclusion

The responsive needs tool has supported choice at end of life for patients and would be of interest to both those commissioning and providing end of life care.
Supporting people with learning disabilities who are affected by a relative or friend with cancer
Authors: Giatras Nikoletta , Tuffrey-Wijne Irene , Butler Gary , Cresswell Amanda
Published: September 2011

Introduction

Around 2.5% of the population have LD. 55% of people with LD live with parents; significant numbers have become carers of elderly parents. Around 15% of people with LD live in residential care homes, often with an ageing population of peers. Most people with LD will therefore be affected by cancer of family or friends at some point in their lives. Their support needs are insufficiently understood.

Aims

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To explore the experiences and support needs of adults with LD who have a relative or friend with cancer

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To make recommendations for practice.

Methods

22 people with LD took part in focus groups and face-to-face interviews. All participants had experience of having a close relative/friend with cancer. The groups were co-facilitated by two co-researchers with LD; each group met four times, using a range of methodologies (including story-telling, role play and Nominal Group Technique) to extract participants' experiences and views. Data were analysed using content analysis.

Results

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Being protected from information (as many participants were) negatively affected their coping.

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Participants worried about their relative/friend's illness and the impact on both the patient and on themselves; but had not shared their worries or questions with others.

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The greatest need was for “someone to talk to”; this need was not met by either families or professionals.

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There was a lack of understanding about cancer itself, and a lack of access to cancer information; participants wanted such information.

Discussion

The needs of people with LD who are a relative/friend of someone with cancer are often overlooked. This group does not ask for support, and therefore pro-active support is needed from cancer- and palliative care professionals as well as from LD professionals. This includes emotional support and the provision of accessible information about cancer.
Determining & prioritising key factors of care needs for patients & carers known to Hospice@Home
Authors: Greene Kay , Evans Tricia , Doherty Tracey , Tongue Nicola
Published: September 2011

Introduction

Ensuring optimal use of resources can be very challenging for Hospice at Home services frequently faced with deciding which patient and carer situations at the very end of life are most in need. An approach was taken combining clinical practice experience with knowledge of existing scoring aids to formulate a tool to assist in prioritising service allocation.

Aims

Enable timely and efficient allocation of care visits to those determined as most in need

Provide a transparent audit trail of resource and service allocation for commissioners when service faced with multiple demands.

Method

Consideration was given to the common factors known to affect patients/carers at the very end of life and developing a scoring system which aligned closely with the Gold Standards Framework Prognostic Indicator Guidance model. The tool was refined during a 6 month pilot change and as service changes ensued.

Results

Clinical staff found the tool to work well in practice and supported clinical decision making. They found using the tool particularly useful when demand for service exceeded resource availability and enabled the clinical team and commissioners to be assured patients/carers most in need received priority.

Discussion

The outcomes of the project concurred with the aims. We have found a way of prioritising our service allocation.

Conclusion

The concept of developing the Prioritisation Tool for Hospice at Home care was driven by needing to establish a system and process which would optimise service allocation relevant to the local population needs. Many factors influence the needs of each patient and carer scenario and these were all included in the tool. Using the tool across two collaborative providers has been positive and enhanced partnership working and service provision. Other providers may find this tool useful.
“LIP” the Living with illness programme
Authors: Argent Ian
Published: September 2011

Introduction

For around 3 years, St Helena Hospice's LIP programme has brought together patients and carers to an informative, supportive forum. The rolling programme of semi-structured sessions is intended to enhance awareness and choice by raising important issues early on in the ‘journey’.

Aims

The programme has three main aims: to provide information on key ‘Quality of Life’ issues for those coping with illness; to facilitate discussion and understanding between patients and carers around these key issues; and to provide support from professionals and other group members. These aims tie in well with NICE guidance for psychosocial support, and with the NCPC's initiative “Dying Matters”.

Method

The 6-week LIP is built around themes identified from previous groups at the Hospice (eg, Families and Feelings, Intimacy and Sexuality, Lifestyle and Coping, and Planning for Future Care). Each 90-min session is run by a relevant professional, with a co-ordinator/facilitator present throughout for continuity. The theme for each session is used as a starting-point for information and discussion. What follows is a more open, free-flowing group time, where issues important to the group members are shared and reflected upon. An anonymous feedback questionnaire is sent to participants after the programme's end.

Results and discussion

Group numbers vary from 8 to 20+, with a good mixture of patients and carers. The weekly themes certainly provide a stimulus for group discussions in-session. There is an important added effect of more conversations taking place at home, within couples and families.

Feedback has prompted some changes, but in general the programme is well-received by participants. Anecdotal evidence suggests that patients and carers have benefited from the early input of appropriate material, as this enhances their informed decision-making later on in areas such as Preferred Priorities of Care, funeral planning, etc.
Developing and implementing a model for multi-disciplinary clinical supervision for staff within a hospice
Authors: Watmore-Eve Jenny
Published: September 2011

Introduction

The development of a model for the internal provision of clinical supervision in which both the supervisors (staff at AFC band 7 and above) and supervisees are well informed staff members of the multi disciplinary team, who use this process of reflection to understand and enhance their work while being supported by the management structure of the organisation.

Aims

To introduce a sustainable model that works successfully across multi disciplinary boundaries.

To provide supervisors with training and ‘supervision of their supervision’ support groups facilitated by an external person/s.

To promote the importance of clinical supervision as a staff support mechanism from the top of the management structure down.

To assist staff to recognise the value for themselves personally and professionally of both accessing clinical supervision, AND providing it for others.

Results and discussion (pro's and cons)

Pros; Supervisors are widely reporting enjoyment and satisfaction from their new roles, and the diversity it brings to their work, as well as the useful insights it gives to the working roles of their supervisees which may previously have been misunderstood.

Supervisees are reporting the benefits of having ‘quality time’ for reflection in their busy working schedule.

And cons; Take - up from trained nurses was slow due to inherent misunderstandings/mistrust of the purpose of supervision. There were also fears regarding the maintenance of confidentiality in a small organisation, and difficulty dividing supervisors into peer support groups avoiding conflicting professional relationships. Sustainability relies in part on the management of the systems and register of supervisors and constant encouragement and promotion regarding the role and importance of ‘supervision’ for individuals, teams and the wellbeing of our patients

Conclusion

Other hospices may be interested in implementing a similar model and can learn from our experience.
Doing different things not doing things differently
Authors: Boosey Claire , Mowle-Clarke Kaye , Stewart Annie , Veli Alison , Widlake Jutta
Published: September 2011

Introduction

Major business change is a complex process requiring clear direction, planning, specialist resources and above all a massive commitment from the organisation. Our Hospice has achieved such transformational change.

Aims

To do different things and to not just do the same things differently.

Methods

For hospices to prevail in the 21st century the original vision of the hospice movement needs aligning with the changes in health/social care communities. Methods were the development of strategic aims, a business plan and sharing this with managers. Time was given to understand this plan, its key messages (integration, innovation, workforce development, excellence, education and support, initiative and public involvement). Buy in was achieved.

Results

An electronic patient record system that allows better integration across sites Unexpected results were a new culture overnight of computer literacy, transparency of who thinks what about a patient and improved role profile as all staff can see what each are doing

Increased bed occupancy

Redesign of social care services which were based on a new model of care

Clinical Governance requirements were followed up via a Falls Audit completed by the Physiotherapist. The recommendations achieved new approaches in falls management, that is, intentional rounding and purchase and use of sensor alarms for patients at high risk of falls.

Discussion

Time was given to develop trust in the process of business planning via a newly formed management level. The question is how this is now embedded further across all staff groups.

Conclusion

We are on a track rather than just moving. True engagement with the public and with our users is needed. Priorities are quality in our services; to assert this when the competition approaches and to build on the trust placed in us by the local community.
Improving renal and palliative care services for patients – a staff exchange programme
Authors: Heatley Sue , Sigsworth Elaine , Braybrook Jan , Robinson Hilary
Published: September 2011

Effective end of life care for patients with advanced kidney disease requires a co-ordinated and collaborative approach between renal and palliative healthcare teams. The Greater Manchester Renal /Palliative Care Action Learning Set was introduced in 2005 to address this need. An initial scoping questionnaire identified potential gaps in the provision of palliative care to patients with end stage renal disease. Key issues identified were lack of both confidence and competencies for caring for patients with end stage renal disease.

Hence, a renal exchange programme was developed over 12 months, including pre-placement education/information packs which also included professional development plans, evaluation forms and liability insurance (honorary contracts). One week exchanges commenced in 2007 with a structured timetable which reflected the patient pathway.

The hospice-hospital staff exchange programme has successfully promoted multi-professional collaborative working across boundaries -linking kidney care/acute care, primary care, and palliative care services. Staff evaluated their exchange experience positively via annual reflective multidisciplinary meetings, attended by both healthcare teams. Renal staff expressed heightened awareness of the importance placed upon spiritual and psychological care and the availability of end of life care services. Hospice staff gained a greater understanding of the complexity of living and dying withend stage renal disease, and the long term implications of renal disease on patients and their families.

The programme is successfully addressing Government recommendations to promote collaborative working outlined in The End of Life Care strategy (DH 2008) which highlights the need for generic nursing staff to gain knowledge and skills in palliative care. Furthermore, the now established exchange programme meets the recent recommendations from the End of Life Care in Advanced Kidney Disease which states that ‘staff exchanges between kidney units and hospices should be developed to improve knowledge and skills of their respective services.’
Legal surgery scheme
Authors: Lee Margaret
Published: September 2011

Introduction

In 2009 18 local solicitors agreed to take part in a free Legal Surgery pilot scheme. This was successful and now it is an integral part of the support services the hospice offers.

Aim

‘Peace of mind’ and ‘putting one’s house in order' were the main drivers with a focus on accessibility for all patients and family members. It would also avoid the inconvenience and expense of an appointment at a solicitor's office.

How the Legal Surgery operates

The Surgery takes place once a month for an hour with a different solicitor each time. Day Therapy takes place at this time so people do not have the inconvenience of ‘another’ visit. Clients can either make an appointment in advance or just turn up. The solicitor sets up in our main public area for people dropping by and a room is available for private discussion. The solicitor can telephone those who are unable to travel and staff can ask questions on behalf of patients. There are usually about two or three clients each month.

Administration of the Scheme

The rota is set up 6 months in advance and each solicitor holds one surgery every 18 months. Each solicitor signs an agreement setting out the points of the scheme but there is no obligation by the hospice to ensure there are any clients for them to see. The solicitors also sign a Self-Declaration of Criminal Record and are made aware of our Health and Safety, Vulnerable Adults and Complaints policies. No one firm is given preference over another. The arrangements are made by our Legacy Officer – a non-clinician.

Advertising the Scheme

There is a leaflet for patients outlining the scheme and posters around the Hospice; most recommendations arise from the social workers and nurses.
Managing a deficit
Authors: Gale Barbara
Published: September 2011

Introduction

In 2009, a year of global financial uncertainty, a hospice faced a £500k deficit. Trustees and management agreed that this was not sustainable and that spending needed to match income.

Process

Before deciding where to cut costs the management team undertook a mapping process for all the service activities required by patients and families. The key activities were then analysed in relation to cost.

Staff piloted two methods of activity mapping – a service blueprint and a resource activity map. The service blueprint was found to be more user friendly and facilitated cross department discussions. In addition to this the last 3 years cost and activity data was examined.

Methods

The process of mapping services highlighted how some activity could be done by different staff or even volunteers, and it encouraged cross departmental discussions rather than silo thinking. Gaps in IT systems and processes were clear.

The results showed a trend of increasing costs but not matched by increasing income. If the trend continued it was clear the organisation risked running out of cash within 4 years.

Trends in activity data showed increasing community activity and home deaths alongside increasing ward costs in decreasing hospice ward deaths.

The whole process was underpinned by a complex communications strategy externally and internally.

Results

This evidence enabled the management team to make £500 000 of savings by closing four beds, making three redundancies, terminating fixed term contracts, freezing vacancies, all non-essential training and expenditure.

Surplus ward staff were transferred into the community team.

The hospice is now in a strong financial position and is investing in new posts in fundraising and clinical areas.
Social media – the twilight years of fundraising
Authors: Clements Kevin
Published: September 2011

Introduction

If trends in fundraising have proven anything, it's that all non-profit organisations need to be quick to adapt in order to continue reaching and inspiring large audiences to give.

Regional press sales have been steadily declining for the last 15 years, with many local titles at an all time low.

In contrast, the mass popularity of social media such as Facebook and Twitter offers charities an opportunity to deliver messages, sign people up for fundraising initiatives and become more interactively involved.

Our organisation is about to embark on a number of strategically targeted social media campaigns to raise more money and make full use of the marketing opportunities this can offer. This will include a viral campaign, centred around the open air screening of the movie ‘Twilight’ locally.

Methods

Twilight has over 19 million Facebook followers which means that we can use well targeted advertising on Facebook as a key method to sell tickets online for the event. People click on the advert, which will be displayed on their own Facebook page, to take them through to an event page where they can buy a ticket online.

Results

Desired results for a project of this nature are clear – to sell all tickets and create an exciting fundraising event without the traditional hard hitting charity campaign attached. In the current economic climate, there is a sense – even if not scientific, that donor fatigue will set in, especially with the high profile campaigns that have been operational recently.

This kind of fundraising avoids ‘over selling’ the need to raise money for charity. Instead, it markets a hugely exciting event to a massive audience via the various social media channels available, while raising money.

Discussion / conclusion

TBC
Time & support – the essential ingredients for the development of the healthcare assistant
Authors: Schrikker Tara , Bacon Ruth
Published: September 2011

Introduction

A competency framework was implemented for band two and three Healthcare Assistants (HCA's) in 2010. This highlighted areas of extended practice outside of the core competencies.

Aim

The HCA's expressed a strong desire to enhance their role, increase job satisfaction and feel valued within the organisation. A training and support structure was implemented to enable them to achieve this.

Method

The HCA's self assessed their performance against the competency framework and then had a 1:1 meeting with their manager to discuss:

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Individual strengths and interests

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Professional development

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Training needs.

The competency workbooks provided information which helped the planning and implementation of a bespoke training programme for HCA's.

To ensure the staff were able to take on additional roles, protected time for education and peer support was introduced.

Results

As a direct result of these initiatives, the HCA's have been able to enhance their job role. Some examples include participation in audit, presenting patients at multi professional team meetings and a more active role during handover. Specific new roles have also been introduced for them including responsibility for fire prevention and training, moving and handling, NVQ assessing, external presentations around End of Life Care, infection control, nutrition, and IT champions.

Discussion

The general consensus from the team of HCA's is that they feel happier with the new aspects of their role and they sense that their presence in the organisation is greater.

Conclusion

Healthcare assistants perform better by being offered variety within their roles without extra financial budgetary implications. They feel empowered, valued and supported and this is echoed in feedback from other professionals within the organisation and external partners.
Practice development unit – every person makes a difference
Authors: Norris Ann
Published: September 2011

Practice Development has become an established element of nursing clinical development in the UK. While hospices may employ individuals to facilitate clinical practice developments, a wider organisational approach to practice development is less evident. Over the last 2 years St Ann's Hospice, Manchester embarked on an organisational approach to Practice Development through accreditation with Leeds University.

The purpose of this initiative was to encourage an ethos of Practice Development throughout the organisation, across all services (paid and voluntary) and professional groups (clinical and non-clinical). The key aim was to encourage wider organisational engagement and empowerment, in the development of quality care and service provision for patients and carers.

The accreditation process began with the formation of Practice Development Lead and Steering Groups. Lead group membership had representatives from different levels and disciplines within the Hospice. The Steering Group membership involved some key Hospice personnel, representatives from local Community Palliative Care Services, Manchester University School of Nursing, business expertise and service users. Accreditation included developing a Practice Development framework, sourcing evidence to achieve the 15 core criteria set by Leeds University, and interim and final on site assessment from a diverse accreditation team.

Examples of projects undertaken over the 2 years that positively influence patient care are:

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The provision of laundry net bags for patients clothes, that can be clearly labelled to prevent loss

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A new recycling scheme throughout the organisation which reduces waste and cost

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The production of a physiotherapy DVD for patients to be used by their bedside.

The initiative has proven its worth as a mechanism for harnessing the creativity of staff and volunteers from across the whole organisation, particularly with groups that previously perceived their roles to be less involved in the development of quality patient focused care.
Measuring hand size in patients with breast cancer related lymphoedema (BCRL)
Authors: Borthwick Yolande , Paul Lorna , Sneddon Margaret , McAlpine Lesley , Miller Claire
Published: September 2011

Breast cancer related lymphoedema (BCRL) affects 24–42% of patients after treatment for breast cancer. The gold standard method to measure the hand swelling associated with BCRL is to submerge the hand/arm into water and measure the amount of water displaced. This method is not always possible clinically and the figure of eight method, which involves wrapping a simple measuring tape around the hand in a specific way, may be an alternative method of measurement.

The aim of the study was to examine the reliability and validity of the figure-of-eight method of measuring hand size in women with BCRL.

Methods

24 people with BCRL had their affected hand measured by both the water displacement and tape measure methods by two novice therapists (testers). The figure of eight measurements were taken using a blank tape which was then measured against a meter stick by the recorder. For the water displacement method, subjects were asked to submerge their hand into the water filled volumeter. The volume of the water displaced was measured and recorded by the recorder. The therapists were therefore blind to the results. Each method was repeated three times and the order of testing was randomised between subjects and testers.

Results

24 full sets of data were available for analysis. In terms of intertester reliability the ICC values ranged form 0.825 to 0.854. For intratester reliability ICCs were 0.889 for tester 1 and 0.919 for tester 2. For validity Pearson's – moment correlation was 0.700 for tester 1 and 0.752 for tester 2 (both p<0.001).

Conclusion

The figure of eight method was found to be a valid and reliable method of measuring hand swelling. The findings of this study would support the use of this simple clinical measurement for determining the extent of hand swelling in women with BCRL.
Providing culturally competent palliative care in Glasgow
Authors: Love Barbara
Published: September 2011

Background

Glasgow's population consists of a significant number of people of South Asian origin for whom many barriers exist to accessing services. Traditional hospice services have not always been seen as acceptable to this population. In order to improve access to palliative care services, a strategic and collaborative approach within Glasgow's minority ethnic communities was required.

Methods

A steering group was established, with representation from the multidisciplinary team, local ethnic communities and community healthcare partnerships. Awareness raising events were delivered across community groups, places of worship, cultural events, festivals, and local media. A nurse led drop-in service was implemented in a Sikh Gurdwara, Hindu Mandir, Islamic Mosque and an independent community centre. The drop-in service offered confidential consultation on issues relating to illness, treatments, referrals and support to both patients and families. Participant feedback was obtained. Ethnicity data was collected and analysed on new referrals to hospice services.

Results

Public engagement events within each of the identified religious communities attracted an audience of approximately 200 at each event.

Volunteers from the minority ethnic population were recruited to support the promotion of the project in their local areas.

Local minority ethnic community elders participated in the development of a translated information booklet.

A small increase in referral rates from ethnic minority communities has been noted.

The nurse led drop-in service has been well received with an average of four consultations per session.

Conclusions

Relationships with minority ethnic communities were strengthened raising awareness of palliative care services. Potential misconceptions and barriers were addressed.

Educational initiatives have provided an understanding of cultural needs in order to provide culturally competent services.
An evaluation of a hospice at home service: a questionnaire survey of GP & district nurse referrers
Authors: Blanchard Hazel
Published: September 2011

Introduction

National recognition of services to provide end of life care and their importance has been increasing over recent years. A questionnaire survey of those referring to a trained nursing hospice at home service was completed as part of the X Hospice's service review.

Aims

According to professional referrers – does the hospice meet its objectives and provide appropriate services?

Methods

A specifically designed questionnaire was pre-tested and piloted before posting to all professional referrers. The single A4 double sided questionnaire looked at referrer satisfaction, carer/family support and patient referrals.

Results

The response rate was 72/110 (65%) but 6 referrers did not consent. 32/34 (94%) of GPs and 19/19 (100%) of District Nurses(DNs) were satisfied or very satisfied with the response time; 32/37 (87%) of GPs and 19/19 (100%) of DNs with team communication and 33/35 (94%) of GPs and 17/18 (94%) of DNs found the team to be always supportive to carers. 50/57 (88%) of referrers felt the service had enabled their patients to die at home. In the free text comments, the support, time and experience of the team were valued. The overnight on-call, night sits and team working with the DN teams were also recognised as strengths, though referrers wanted more night sit availability.

Discussion

The results correlate with the literature on Hospice at Home services to date. The evaluation has prompted meetings with GPs and DNs to give an update about the service. It has confirmed the value of the service within the community. The request for more night sits was deemed to be valid.

Conclusion

This survey demonstrated that X-Hospice at Home is highly valued by referrers and has enabled appropriate service development in line with their feedback.
Setting up a community interest company alongside a hospice
Authors: Clitherow Rebekah
Published: September 2011

The presentation will describe the setting up of a Community Interest Company alongside a Hospice.

We aimed to set up a Community Interest Company to explore a potential new income stream. The CIC also provided the opportunity to deliver projects that were complementary to our core purpose but without overt investment from the Hospice.

We took various projects, such as a schools bereavement link project (offering advice, training to school staff and support for children facing serious illness or bereavement), which had grown beyond the remit and capacity of the Hospice Counselling Services into the Community Interest Company so that these services were available locally to be bought in.

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Many local schools are making service level agreements with the CIC and requesting that we develop services, such as group work for children affected by loss.

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Building partnerships locally has increased opportunities for the Hospice fundraising department.

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Volunteer counsellors now have opportunities for progression- this has improved recruitment and retention.

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We are building resilience and awareness of response to loss in the local community; the people benefiting from the projects are the patients, carers and relatives that will access the Hospice in the future.

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Managing the change with a new initiative and communicating the potential benefits across the Hospice has taken time.

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Keeping partner organisations on board as the project transferred to the CIC has been important, as has communicating the relationship between the Hospice and CIC.

While Hospices are specialists in bereavement care the skill set that comes with supporting people emotionally is transferable to many situations and expertise in loss, Hospice values and approach is welcomed within other organisations.

Our experience will be of interest to any Hospice considering setting up a Community Interest Company as a potential income stream.
A model of care in a children's hospice – report on an independent evaluation
Authors: Lindsay Bruce , Crozier Kenda , Leeson Janet , Wray Jo , Andrews Lauren
Published: September 2011

This paper reports on a Department of Health funded independent evaluation of a Children's Hospice service model. Over 150 stakeholders; hospice staff, representatives from external agencies, children, young people and families; acted as participants. The findings and recommendations are widely applicable in children's hospice care, identifying issues of international relevance.

A mixed methods approach was adopted, involving focus groups with family members and hospice staff, individual face-to-face or telephone interviews with family members, hospice staff and external staff and a web-based survey for parents. Topics covered included participants' perceptions of the service model and the provision of care, the use of assessment and outcome measures, and the current and potential use of emerging technologies within hospice care. Interviews were recorded and transcribed verbatim and analysed using thematic coding.

Findings

Perceptions of the model were inconsistent: some respondents viewed the intent of the model positively but had concerns about its achievement in practice. Tensions between teams and the impact of end of life care on respite were identified as concerns. Families reported high levels of satisfaction with care, but the impact of late postponement or cancellation of respite care was a potentially serious problem. Transition to adult services was viewed as increasingly important as life expectancies increase.

The evaluation of individual care episodes, rather than overall service provision, did not appear to be undertaken systematically. While emerging technologies have the potential to impact positively on care, their adoption was seldom noted by participants.

Key recommendations

Revision of internal communication systems, to improve links between hospice centres, and between professional groups and teams; clearer definition of the model of service; evaluation of potential uses of emerging technologies and a review of the impact of end of life care on respite would all be of benefit to the effectiveness of care delivery.
Talking about dying and death
Authors: Kirshbaum Marilyn , Carey Ian , Conrad Laura
Published: September 2011

Objectives

This presentation will report on research commissioned by a hospice in England and work done to promote meaningful discussion about this sensitive topic. Since 2008, the hospice has run a series of events to encourage people to be more open. Two panel discussions have been held, entitled ‘Dying & Death: Let’s Talk about It', which have resulted in good attendance and constructive dialogue. In addition, the local university was commissioned to identify perceptions surrounding talking about dying and death.

Focus groups

Two focus groups explored viewpoints from the general public and practitioners. The focus group sessions were facilitated, audio-recorded, transcribed, coded and analysed by researchers.

Panel discussion

The panels consisted of people such as writers, poets, academics, vicars, medical consultants and journalists; the audience was invited to ask questions.

Results

Four conceptual themes were identified from the focus groups:

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Emotions, beliefs and behaviours

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Coping with adversity

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Difficulties, barriers and tensions

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Fostering a participative future.

The panel discussions produced dialogue around issues such as the role of religion in death, what constitutes a good death and euthanasia.

Conclusions

A lack of openness together with a ‘live forever’ mindset contributed to a cultural shift where the inevitable isn't discussed; which hinders advance care planning and adversely affects the grieving process. Dying and death was articulated as an upsetting and taboo topic. Some practitioners take the view that they “do not want to upset patients” and choose avoidance, while others are drawn to talking as an integral aspect of their role. Dying people often want the opportunity to talk through their wishes, though such discussions with the ‘general public’ can be more problematic.

Recommendations

Hospices are advocated to address the need for more outreach events in the community and wider education and training for all.
Breakthrough medication and implications for practice
Authors: Wright Angela , Tague Yvonne
Published: September 2011

Introduction

An exercise which started out as an aide memoir for medication administration/documentation was recognised and adapted to become an audit tool to measure the amount of breakthrough medications given. It was recognised that administering these medications takes a huge amount of time on a daily basis and so has other implications.

Aims

The purpose of this presentation is to highlight the issues surrounding breakthrough medication needs of patients in a hospice inpatient unit. This will highlight issues surrounding symptom control, drug rounds as well as quantifying a huge part of the nursing role making it easier to measure.

Method

Staff document every breakthrough drug given over a 24 period, this includes the type of drug, time given and number of inpatients. Data it is divided in to 4 h blocks to give a clearer picture of when breakthrough medication is needed.

Results

A snapshot comparison between January 2010 and January 2011 is given. Although the results demonstrate a correlation between the number of patients and number of breakthroughs given, other patterns have emerged. Most breakthroughs consistently occurred between 10:00 and 14:00, the least between 02:00 and 06:00. Total number for January 2010 was 617, for January 2011 745. This on average equates to around 227 h of nursing time over the 2 months.

Conclusion

The amount of breakthrough medications given is huge, the impact of which on patients is difficult to measure. Specific times when breakthrough needs are greater have been assessed and the morning drug round time changed. This has been helpful to quantify a complex part of the nursing role which may be helpful particularly to non-clinicians.

Recommendations

Further studies are recommended to include more detailed analysis of specific data. Suggestions are specific symptoms, methods of administration, effectiveness of end of life care, prescribing and implications for staff.
Improving practice through audit: administration of blood transfusions within a hospice setting
Authors: Waddell Jennifer , Hodgson Aruna , Wiseman Jenny
Published: September 2011

Background

The cause of anaemia in palliative care patients is often multifactorial. Symptom burden is important when deciding whether to transfuse or not. Although formal consent for transfusion of blood products is not legally required, it is good clinical practice to inform the patient of potential risks and benefits. Following the Safer Practice Notice 14 “Right patient, right blood” in November 2006, national competencies for clinical staff involved in blood transfusions were introduced. The hospice decided to look at the blood transfusion process.

Aims

To assess whether aspects of the blood transfusion process were adequately documented, including consent, provision of patient information leaflets, symptomatic benefit following blood transfusion and decisions regarding the appropriateness of future blood transfusions.

Methods

Retrospective audit of patients receiving a blood transfusion within the inpatient unit or day hospice, against hospice standards. Data collected included demographics, haemoglobin (Hb) and symptoms pre-transfusion, blood prescription details, documentation of consent and decisions about whether future transfusions would be appropriate. Initial data collection period June to November 2007. A blood transfusion proforma was developed and introduced. Repeat data collection period April to September 2010.

Results

A comparable number of blood transfusions were given in each period. Documentation of informed consent improved from 4% to 81% transfusions. Use of information leaflets increased from 0% to 29% transfusions. The number of transfusions that symptoms were not documented was reduced from 62% to 10%. Fatigue was the most common symptom reported in each cycle. Documentation of decisions about whether future transfusions were appropriate improved from 17% to 24%.

Conclusion

The proforma has improved the documentation of symptoms, consent and use of information leaflets. Further improvement is needed in other areas. This will be achieved through dissemination of audit results, adjustments to current proforma and staff education. A re-audit is planned for the future.
Making volunteers count
Authors: Scott Ros
Published: September 2011

Background

Many hospices owe their origins to volunteers. Volunteers' involvement today is still integral and vital to the success of the hospices they support. However the strategic importance of volunteers is often overlooked and the role of volunteers and their contribution to the cost effectiveness and sustainability of hospices is rarely considered. However if volunteers are to be fully recognised as a strategic asset we must be brave enough also to describe volunteers in business terms.

Purpose of project

The purpose of the project is to:

▶

Determine the economic value of volunteers and return on investment

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Demonstrate volunteering as a strategic asset.

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Explore the use of the economic value of volunteers to influence funders.

Methods

Volunteer hours may be collected in many different ways depending on the way volunteering is structured. Hours are calculated on a monthly basis and recorded on a spreadsheet. Staff equivalent roles and hourly rates are then listed for each volunteer role. These are then multiplied by the number of volunteer hours and a percentage added for on costs. Once the total has been calculated the return on investment can be calculated.

One hospice's experience Volunteer value in CHAS is calculated and reported on an annual basis. In the year 2009–2010, 900 volunteers donated 83,100 h, with an economic value of £1.25 m. The return on investment was 7:1. The information is disseminated in many ways and is used for many purposes, including as part of the charity's annual report.

Conclusions

In this time of challenging and uncertain economic circumstances, measuring the value of volunteer time has many benefits to hospices and can be used in many ways. These include monitoring and demonstrating the cost effectiveness of services and influencing funders.