bluuebunny/crossref_metadata_2025_split huggingface dataset:
Planning and choices towards the end of life – findings from a raising public awareness campaign
Authors: Quinn Sharon , Hickey Deb 
Published: September 2011

In response to the National End of Life Care Strategy, and the Dying Matters campaign, the authors ran a raising public awareness campaign from March 2010 to February 2011.Aim▶Gather public views and raise awareness of end of life care while informing members of the community and providers of health and social care of the opportunities and choices available to those with life-limiting disease.▶Compare knowledge of local views with national findings and use this local knowledge to help inform and underpin the locality end of life care strategy.A series of public events and road shows were staged, proving a very successful way to engage the public in discussion about death and dying and the importance of identifying future wishes. An End of Life care planning and choice questionnaire was used as a vehicle for this discussion. The questionnaire was also used with a range of health professionals allow some interesting comparisons.A total of 304 questionnaires have been analysed.Some of the initial findings include 86% of those who had completed questionnaires had talked to their family and friends, however less than 1% had discussed this with any Healthcare Professional. 60% of people hadn't made a will (53% of the professionals group).The majority of people felt conversations around these issues should take place either when the person is well or diagnosed with a life-limiting illness but still well, however the majority of conversations still happen when people are very ill. Many eluded to missed opportunities for this to take place when they had had contact with health professionals.Healthcare professionals should be much more pro-active in starting discussions when people are well and when they are first diagnosed.The GP was often identified as the prime professional to do this.Healthcare professionals responded in similar ways to the general public to most questions.
A project to enable tissue donation for research purposes
Authors: Waterhouse Esther , Feathers Luke , Roberts Michael 
Published: September 2011

IntroductionWhen hospice patients asked about organ and tissue donation we had little to offer them, as patients with malignancy are normally limited to donating corneas. This paper describes a project enabling patients to donate tissue for research purposes.The projectWe worked in partnership with our local bone and tissue bank, who have experience in using tissue from both live and deceased donors (eg, bone from patients who have a hip replacement). Our local NHS Research Ethics Committee agreed a proposal to enable patients to donate tissue after their death. Small samples are taken from up to 35 different tissues/organs and these can be used by pharmaceutical companies or research groups, with ethical approval. The project was approved by the Hospice Board of Trustees.The consent processDuring end of life discussions consultants will raise the issue if appropriate. If patients wish to know more, they are given information leaflets describing various donation options, including corneal donation. Consent is taken by a consultant and a senior member of the bone bank. Patients specify which tissues/organs they are happy to have samples taken from. Unlike organ donation, relatives cannot consent on a patient's behalf after death. If the relative withdraws consent after death, then we do not proceed.Tissue retrievalAfter death, the bone bank is informed and makes the arrangements. The body is moved to our hospital mortuary and samples are taken. The body is then restored in appearance and taken to an undertaker of the family's choice within 14 h.Problems – or lack of themPatients and their families have been very supportive of the project. One challenge is that the body cannot be moved, nor retrieval take place, until a death certificate has been issued. This potentially limits the project for patients who die at home.
What is good end of life care after stroke?
Authors: Jeffries Clare , Shipman Cathy , Wee Bee 
Published: September 2011

IntroductionStroke is the third commonest cause of death and causes significant symptoms and disability. Acute stroke care in the UK predominantly occurs in hospital. Guidelines recommend that patients should be cared for in stroke units to improve survival and disability.The End of Life Care (EOLC) Strategy aims to improve care for all irrespective of diagnosis and place of care. Previous research suggests that stroke patients and families have unmet palliative care needs. Researching these needs presents challenges due to the effect of stroke on communication, cognition and consciousness.AimsTo determine what healthcare professionals on a stroke unit believe constitutes good EOLC for stroke patients.To determine any barriers exist to implementing good care.Methods15 healthcare workers from an acute stroke unit were purposively sampled. Semi-structured interviews were recorded, transcribed and analysed using framework analysis.ResultsProfessionals believed the following were important aspects of end of life care:▶Treating patients as individuals▶Providing care in a dignified manner and in a comfortable environment▶Good personal care and symptom control▶Ascertaining the needs and monitoring patients▶Recognising death▶For the team to be aware of the care plan▶Informing families and involving them in decisions▶Facilitating patient communication and patient-family interaction was also valued▶Good team structure, function and training.Barriers to care included resource and time limitation, competing priorities, difficulties in prognostication and communication and not knowing patients' wishes.ConclusionImportant aspects of care are identified. Healthcare professionals' views led to recommendations which include:▶Using a care of the dying pathway▶Encouraging patients with capacity to discuss their care needs and wishes▶Discussion of dying patients care at multidisciplinary meetings▶Facilitating patient communication▶Educating stroke team in palliative care and palliative care teams in stroke care▶Research into prognostication is needed.
A report on physiotherapy services for children and young people
Authors: Davies Jo , Miller Michael 
Published: September 2011

IntroductionThere is a recognised difference in the centralised children's services compared with the more localised adult services for those with neuromuscular diseases. At the young people's unit at Martin House transition is a difficult time with uncertainties about the availability and working practices of physiotherapy services for adults.With funding from the DH as part of the £30million the physiotherapy services in Yorkshire and Humber were reviewed.MethodContacts were made from a number of sources, starting with known children's services and an email questionnaire was sent. There was a small circulation of questions to users of the service.ResultsThere was excellent completion circulated after contact had been established by the researcher.▶The paediatric service in the region is well coordinated with close links with respective neuromuscular teams.▶The challenge of identifying the different adult services highlighted the possible difficulties faced by people with a neuromuscular condition.▶There is variety in the provision and accessibility of adult services offered around the region.▶There is a limited review/monitoring service in place for adults with only 42% of teams offering this.▶54% of adult teams are unable to provide on-going physiotherapy. They are usually goal- orientated and based on self-management which isn't always appropriate in a progressive deteriorating condition.▶The lack of access to specialist physiotherapy in adult services is a problem for both community and hospice physiotherapists and patients.▶Provision of Hydrotherapy is an on-going issue.Recommendations▶Consideration of a review/monitoring service for adults is needed.▶Consideration of a transition service is needed.▶There is a need to provide more access to specialist neuromuscular physiotherapists in adult services.▶A maintained and accessible database of adult services for these patients should be made available to assist referrers.
Breathing space: a flexible group programme for people with shortness of breath
Authors: Stuart Demelza , Wosahlo Penny 
Published: September 2011

IntroductionBreathlessness is a common symptom experienced by patients with advanced conditions which greatly impacts on wellbeing. The nature of patients' breathlessness often prevents them from being able to access support representing an unmet need for this population.Breathing Space is a non-pharmacological support programme for breathless patients with an advanced medical condition.The programme is a multi-disciplinary initiative with collaboration between the Hospice and local community services.AimsTo empower patients through:▶Understanding why they are breathless▶Awareness of practical strategies to self manage breathlessness▶Living life to the fullest alongside breathlessness▶Providing support for patients and carers not able to access existing services.MethodsA unique model was developed with a focus on maximising accessibility for the breathless patient. A series of stand alone modules encompass breathing control techniques, education and coping strategies to equip the patient with a set of skills to self manage their breathlessness even if they attend just once.Breathing space▶9 drop in modules (Boothet al, 2006)▶Carers welcome and encouraged to attend▶Transport and lunch provided free of charge▶Advocacy service available.ResultsThe results from the MYCaW outcome measure, attendance and user feedback will be collated and presented.DiscussionWhile managing breathlessness is well established in palliative care, there is limited evidence to support the effectiveness of these interventions. Breathing Space offers a refreshing approach to this challenging symptom within a flexible group framework. Robust evaluation will contribute to the evidence base for non-pharmacological interventions for palliative breathlessness.Through collaboration between hospice and community professionals, Breathing Space allows for sharing of practice and expertise.ConclusionBreathing Space supports patients with advanced breathlessness to improve their wellbeing.
Using a holistic assessment tool in a multi-professional motor neuron disease clinic
Authors: Wright Heather , Bruni Carla , Quinn Sharon 
Published: September 2011

BackgroundPatients who are diagnosed with MND begin a journey of change which affects the individual for the rest of their life. In South West Essex a monthly clinic has been set up enabling the patient and their carers to access a wide range of health professionals. The authors use a modified personal assessment tool as a structured way to discuss concerns.MethodPatients are asked to complete the tool in the waiting area with the assistance of their carer if needed. There are four parts of the tool: the distress thermometer (rates ‘total’ distress from 0 to 10), a list of problems which can be ticked, problems are then ranked (1–4) and finally, an action plan is agreed. The tool was given to all patients attending the clinic between November 2010 and April 2011.Results20 patients attended clinic over the 6 month period. 15 assessment tools were completed. 7/15 completed the distress thermometer (DT) with an average score of 5 (range 0–9). 3 patients completed a subsequent thermometer assessment. One score decreased from 9 to 8 and the other 2 scores increased (3–7 and 3–5). Numerous unmet needs were highlighted including: Worry, fear or anxiety 4/15, anger or frustration 4/15, breathing difficulties 4/15, and mobility issues 5/15. Examples of comments included worrying about “lack of independence” and “who will look after my dog”.DiscussionBy using this tool we have allowed patients to identify unmet needs. Often the highlighted needs were not issues we would have explored previously as routine. The tool has been useful in initiating conversation around emotional issues. Another important outcome has been prompting onward referrals.ConclusionThe use of this tool has been successful in assessing unmet needs in a MND clinic.
Developing e-learning in a hospice setting: benefits, challenges and outcomes
Authors: Foster Sue 
Published: September 2011

AimTo establish a virtual learning environment (Moodle) within HospiceBackgroundOn line teaching and learning is making a significant impact on education. In recent years the use of e-learning has increased rapidly, enriching the teaching and learning experiences for many, due in part to the convenient and flexible nature of this delivery option. Following a successful outcome to a business case submitted to senior management, a project was undertaken within the hospice education department to establish a VLE using ‘Moodle’. It was hoped the outcome of this initiative would have a significant impact on the costs, resources and time taken to provide mandatory training and to maximise opportunities for continuous professional development. To achieve this the project team worked with key partners from each directorate to ensure the VLE met the needs of all its users.MethodThe pilot for the e-learning project consisted of four mandatory training sessions, Vulnerable Adults and Child Protection, Infection Control, COSHH and Fire Safety, with 10 participants for each. Guidelines were developed and training was facilitated prior to undertaking the pilot. At the end of each session participants were asked to complete an on line evaluation and on completion of the pilot project, focus groups were held to capture their thoughts and experiences.FindingsBoth challenges and rewards were part of the experience. Most of the challenges seemed to be a consequence of the lack of face-to-face interaction in the on line environment, lack of IT skills and feelings of isolation. The flexibility of e-learning offered a solution to many of the challenges inherent in providing education and training within the healthcare setting. Advantages included a learner-centric, easily accessible, cost effective and measurable means of providing staff training and educational opportunities.
Carers support
Authors: Attiwell Teena , Forster Liz 
Published: September 2011

In the last few years there has been a weath of research and literature identifying the importance of supporting Carers. The End of Life Care Strategy(2008) identified four key principles in supporting Carers.▶1) Carers need to be involved in decision making with the recognition they have their own needs▶2) Need information about the likely progress of the person's condition and information about services available▶3) Practical and emotional support both during the person's life and after bereavement▶4) Carers to have their own needs assessed and reviewed.Aims of the new serviceTo provide psychological support, information and advice to Carers; to provide an opportunity to share experiences with one another; to offer Complementary Therapies.The ServiceThis takes place fortnightly on a Tuesday evening. A personal invitation and information leaflet about the service is sent to every Carer of the Day Hospice patients.VenueDay HospiceResourcesThe service is run by two qualified nurses, two complementary therapists and a volunteer. The hospice receives a grant to fund this.How the need was identifiedThe need was identified through our patients and carers feedback via a survey conducted in 2009. We also wanted to implement this as part of what the ‘End of Life Strategy means for patients and carers (2008) to support carers.EvaluationCarers are requested to complete a questionnaire after 6 months. This has shown that the service is useful and provide valuable support to the carers.Proposals for the futureDeveloping a bereavement support group for carers, currently the carer is contacted 6 weeks after bereavement to be offered counselling – we have identified ‘group’ bereavement support may be more beneficial as they have met together as carers and formed friendships, so meeting post bereavement could be further support to them.
‘I don’t have to explain myself': using open groups to mobilise peer support in palliative care
Authors: Cullen Anne , Nolan Steve , Sandford Mo 
Published: September 2011

ModelOver the last 2 years members of a hospice social work, bereavement and chaplaincy service have piloted the use of semi-structured, facilitated open groups for day hospice patients, carers and bereavement service users. The approach is based on slow-open homogeneous group work model.RationaleThe approach developed initially as an operational response to the needs of a number of Carers' Group users who were inappropriately returning to the group after the death of the person they had cared for. Team members observed that those who returned were seeking a continuing connection with the hospice and staff that had provided a safe, ‘holding’ environment. In addition, staff identified that any support group would need to be user-led, inclusive and flexible.The evident success of this responsive model of semi-structured, facilitated open group work lent itself to other groups of varying size, and the model has been used with several initiatives, including weekly day hospice patient groups and monthly family bereavement groups, which attract 25–30 children and adults.FeedbackEvaluations by participants of all the groups indicate that this approach is well attuned to the needs of palliative care services users. A further unanticipated benefit is that the model provides the opportunity for skill sharing within the multi-disciplinary team, including salaried staff and volunteers.Focus of presentationThis presentation, based on a rigorous service evaluation, outlines the development of the model as a response to user needs; it describes the principles on which the model has been established; and it critically appraises the strengths and weaknesses of the model through user feedback and staff reflections.
A review of lymphoedema service provision in adult hospices in the UK and Ireland
Authors: Birch Kathy , Knibb Wendy 
Published: September 2011

IntroductionThis study scoped lymphoedema services in adult hospices in the UK and Ireland. It was undertaken to benchmark and inform development of a local hospice lymphoedema service and was completed as part of an MSc in Advanced Practice.AimsThe study investigated hospice demographics, lymphoedema services including budget provision, treatments used, staffing levels and qualifications. A secondary aim explored the use of Manual Lymphatic Drainage (MLD) with the palliative population.MethodsThe study was undertaken in November and December 2010. It adopted a quantitative approach using a postal questionnaire sent to 195 adult hospices, with in-patient units, in the UK and Ireland. This represented the whole population. Data were analysed using SPSS, with open-ended questions grouped and themed.ResultsA response rate of 65% revealed that 61.4% of respondents provided some level of lymphoedema service. Where services existed, 69.2% of hospices had staff employed solely to treat lymphoedema, 66.7% had ring-fenced budgets for lymphoedema care with 67.3% treating lymphoedema patients from outside the palliative population. Nurses and physiotherapists were the main professional groups involved in lymphoedema management.MLD was employed as a treatment strategy for palliative patients in 75.6% of hospices. It was used holistically, often in an adapted form, with both physical and psychological benefit.DiscussionWide geographical variations exist with a cluster of fully developed services in the Midlands. It appears that different models of care are evolving in Wales and Northern Ireland in response to recent national guidance.ConclusionsThere is potential inequity of service provision due to geographical variations. Further research is needed to plot the trend of hospice lymphoedema services, explore the impact of new models of care and give further consideration to the use of MLD with palliative patients.
Implementing triage in a busy hospice team
Authors: Knighy Andrew 
Published: September 2011

The number of referrals to the Princess Alice Community Team continue to rise and, while it is apparent that the percentage of referrals for patients with non-malignant disease has not increased, the complexity of many referrals and the chronicity of cancer means that patients are referred for longer term care.The Community Team has been responsive but the need to see a patient as urgently as the referrer perceives has placed undue stress on the Clinical Nurse Specialists (CNS). The referral process was uncontrolled.We therefore employed a triage nurse to:▶Assess all referrals for appropriateness and urgency▶Gather information about new patients before they are formally assessed▶Respond quickly to urgent referrals▶Speak to patients and carers, introduce the service and gain a sense of their needs▶Assess non-urgent referrals, managing initial new patient needs through liaison with the primary care professionals▶Assign patients to other departments, for example, therapists or day hospice if primary request is for this intervention▶Keep a telephone only contact patient caseload▶Record and audit new referrals and outcome of triage processThe post has been a great success. An additional post has been made.▶CNSs have not felt burdened by new referrals arriving with little information. The triage nurse can obtain copies of clinic letters, imaging reports discharge summaries etc.▶Patients have felt welcomed and their cares listened to, an introduction to the service has been undertaken. They have been reassured.▶Some patients have been ‘referred back’ to the referrer or GP as not appropriate or, more commonly, have been held on the triage caseload until a time that requires a CNS visit.Stats on patterns of referral, outcomes and ‘refer backs’ will be provided as well as a discussion on future developments.
Palliative care social work – the leadership art of the chameleon
Authors: Cullen Anne 
Published: September 2011

Focus of the studyThe study was informed by a literature review that identified similarities between the characteristic values and skills of social workers and some recent descriptions of close ‘charismatic’ or ‘transformational’ leadership, especially an account of the role of the leader as ‘servant and partner’.MethodologyThe method adopted was to undertake a qualitative study of palliative care social work in a hospice in the south of England. Specialist palliative care social work was selected as a likely source of examples of social work practice ‘at its best.’ The main fieldwork activities undertaken were semi-structured interviews with social workers and other members of the hospice's multi-disciplinary team, followed by a final workshop session.FindingsThe study showed that social work practice in this setting was driven by an attitude of profound respect and sustained availability, which included a commitment to ‘being with’ people in circumstances of intractable suffering. Specific mechanisms were identified through which social workers used professional skills such as adaptive communication, sensitive risk management, systemic thinking and improvisation, to enable service users to identify and express their priority needs, to mobilise their own distinctive abilities and strengths, and to optimise their use of informal support networks. By making these insights accessible to the multi-disciplinary team, social workers promoted the ability of service users to function as effective co-experts within the distributed leadership dynamic of the multi-disciplinary team.PresentationThe presentation provides a detailed analysis of the processes through which social workers supported service users to discover and exercise their own capacity to be ‘leaders in our own lives’; and how this contributes a to a more practical understanding of what is involved in ‘servant and partner’ leadership.