bluuebunny/crossref_metadata_2025_split huggingface dataset:
We're living well, but dying matters
Authors: Austin Bradshaw , Joanna Black 
Published: September 2011

IntroductionThis 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.AimsThe DVD aims to:▶Demonstrate that people with learning disabilities can be fully involved in talking about dying, understanding choice and planning for things during their life.▶Inspire other people with learning disabilities to make their choices and preferences clear about issues around dying, death and bereavement.MethodsThe 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.ResultsPeople 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.DiscussionThe attempts by individuals and organisations to be “gatekeepers” and protect their clients from getting involved in this project highlighted the need for it.ConclusionThis 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.
Establishing a nurse led specialist palliative care satellite clinic
Authors: Gibson Vanessa , Grint Tracey , Campbell Heather 
Published: September 2011

IntroductionIncreasing referral numbers within a rural location have prompted us to explore new ways of working to not only increase timely access to specialist palliative care services but also to also ensure that these services, when deployed, function effectively and meet the changing needs of patients and families.A Specialist Palliative Care nurse led satellite clinic based within a rural general practice offers scheduled appointments to appropriate patients,▶Facilitating enhanced communication with primary healthcare colleagues▶Expediating effective symptom control by facilitating multidisciplinary team working▶Promoting continuity and seamless care.The project is important because it challenges traditional ways of working and standard community nurse specialist role.AimsTo increase access to specialist palliative care services within a rural locationTo expediate symptom controlTo evaluate the patients experience of new models of service provision- this will inform future service development.Methods▶A literature review was undertaken▶A potential pilot site and CNS caseload was identified▶Service user consultation was undertaken by one to one discussions▶Comparable services were benchmarked▶An audit strategy including a service user satisfaction survey, 360 degree review and use of recognised outcome measurement tools has been planned▶Key stakeholder support was secured and a pilot agreed.ResultsInterim data suggests:▶Initial service user reluctance▶Improved team working with primary healthcare colleagues▶Increased user choice▶Reduced travelling time for CNS.Discussion▶The satellite clinic is now established within a supportive GP practice▶A small number of patients are currently accessing the clinic▶Multidisciplinary team working with primary healthcare colleagues has been markedly enhanced▶The CNS's educational activity within the host practice is increased.
Keeping medicines management on the radar!
Authors: Schrikker Tara 
Published: September 2011

IntroductionA trend identified that drug errors were happening due to complacency and a shortfall in nurses' capabilities in Medicines Management. The potentially serious consequences of this led to the introduction of a rolling medicines management programme.AimTo create an effective Medicines Management system containing structure and guidance in order to ensure patients' safety and minimise the occurrence of drug errors.MethodIntroduction of a yearly medicine management programme which includes:▶Training sessions – responsibility and accountabilities, update on drug calculation skills▶Annual drug calculation test▶Annual drug administration competency▶Annual syringe driver assessmentA scoring system for medication errors was implemented to ensure consistency in assessing the severity of the drug errors and determining the appropriate action to take.ResultsThe Medicines Management Policy and Procedure has been amended and awareness of good medicine management is embedded in the daily routine. The hospice encourages a supportive culture, involving staff in the process of investigation and the implementation of new ways of working. Medication errors and near misses are managed in a fair and supportive manner.All staff successfully achieved the pass rate of 95% for their Drug Calculation Test. The number of incidences of drug errors has fallen by 50% within the last 12 month period.The focus on this area has enabled trends to be identified, both general and individual, and remedial action taken to improve practice. Measures have also been taken to minimise risk.ConclusionAwareness, communication, education and support are the main drivers for the reduction in drug errors. Staff feel more confident as their competencies have increased.The implementation of an annual programme keeps medicine management on the radar and the programme is an effective and efficient investment to enhance patient safety.
Role of a hospice education unit in leading the development of an end of life care model of service
Authors: Jeynes Salli , Challinor Annamarie 
Published: September 2011

Key conceptsThis innovation has been developed and led by a palliative care education centre supported by two hospices. It illustrates how hospices can lead, innovate and influence the quality and strategic direction of end of life care (eolc) within their community. The key to this is a passion to lead and work collaboratively with multiple care settings and staff groups. The strategic engagement of the eolc commissioner has been instrumental to its success.BackgroundAchieving quality eolc across a myriad of care settings in which disparate groups of professionals work and where the culture of care is varied and inconsistent, represents an enormous challenge. In response to this challenge a new model of service has been developed to facilitate end of life care in a co-ordinated and unified way across Central and Eastern Cheshire.Aims and outcomesThe structure of this model enables sharing of best practice and innovations across professional and organisational boundaries to promote a whole systems approach. The approaches and ethos of this model are improving the experiences of patients, families and care workers with evidence that care is becoming better co-ordinated. Through this, obstacles and barriers within the patient pathway are being identified and overcome. Care sectors are encouraged to share good ideas and best practice with communication between professional groups and different organisations becoming more streamlined.The model is led by two Macmillan eolc post holders and three co-leaders who work across care sectors. The team, within the model, engage directly with champion groups from a variety of care settings who are made up of different professionals caring for patients and families. They are inspired and developed by the model team to change and enhance their practice in ways that enable patients and families to live and die where they prefer with dignity.
Reaching out to care homes: a new specialist practitioner service
Authors: Skilton Carolyn 
Published: September 2011

IntroductionThe End of Life Care (EoLC) Strategy (2008) recognises that most people in care homes consider it to be their main residence, and the place where most would choose to die yet deaths in care homes represent 16% of all deaths.AimTo provide:▶Support for patients and staff in care homes to access medications and expertise in palliative care to prevent hospital admissions▶An opportunity for patients /families to express their wishes for preferred priorities of care to prevent them dying in unfamiliar surroundings.MethodAll new referrals for residents in care homes (not known to community palliative care services) were taken by the Specialist Nurse Practitioner and further clinical information obtained from the GP or hospital.An assessment visit was organised, and the data on referrals and interventions were recorded.Results64 patients were supported:▶81% died in the care home▶4% were either still alive or place of death was unknown▶4% died in hospital and 1% in the hospice▶25 prescriptions were issued for anticipatory drugs▶24 prescriptions were amended▶7 homes requested, and were provided with, training in EoLC.DiscussionPatients were able to receive support at the end of life and to remain in their own environment, without trained nurses on the premises. The need for increased training in EoLC, highlighted by staff, was also met.ConclusionThis innovative service achieved the vision of both the EoLC Strategy and the hospice's objective of reaching patients and staff in care homes to reduce hospital deaths and to meet training needs. It empowered the carers in the home by giving them the confidence to comply with residents' wishes knowing that appropriate support was available.
Developing the assistant practitioner role for palliative and end of life care
Authors: Arkwright Sharan , Hewitt Carole , Bass Madeline 
Published: September 2011

In 2009 Foundation Degree Forward and Help the Hospices encouraged member hospices to collaborate in developing a Foundation Degree in Palliative and End of Life Care. The objective was to provide a nationally recognised qualification for palliative care professionals, who traditionally, have not engaged in career development through academic achievement. A uniformity of approach would provide consistency and transferability across sectors. Within palliative care, this ‘new’ role would assist the delivery of future workforce planning, through cost effective and flexible skill mix enrichment.Three pilot initiatives emerged from across the UK; St. Ann's Hospice Manchester, St. Margaret's Hospice, Somerset and St Nicholas Hospice, Bury St Edmonds.A steering group was formed with representation from relevant provider organisations including Strategic Health Authorities, educational providers, Social Services, community providers and hospices. A scoping exercise ascertained how the Assistant Practitioner role could be integrated into existing services. Job descriptions were subsequently written encompassing the Palliative Care and End of Life module. Recruitment to the degree programme commenced in 2010.Pilot implementation▶St Ann's Hospice in partnership with NHS North West and NHS Bolton: 15 Trainee Assistant Practitioners (TAP's) commenced Foundation Degree programme in January 2011 (University of Bolton as the Education provider)▶St Margaret's Hospice in partnership with Strode College commenced a level 5 Diploma for TAP's in 2011▶St Nicholas Hospice in partnership with a local HEI have a Foundation Degree starting in 2011 with 2 candidates to date.Future stepsEvaluation of the foundation degree programme throughout training and 12 months post qualification. Evaluation will include perceptions of course participants on course content, delivery and relevance to role, followed by observational activity analysis post qualification and delivery of Assistant Practitioner role.
Day services partnership working
Authors: Johnson Wendy , Sinclair Jane , Reeder Sally 
Published: September 2011

St. John's Hospice - Lancaster, serves patients within its Community for palliative and end of life care. Despite not being set up specifically for cancer patients, the hospice services are predominantly accessed by cancer patients.The Day hospice services have recently undertaken a number of initiatives to try to encourage wider access by long term conditions patients. The first success was a 'One Stop Multi-disciplinary Clinic' for motor neuron disease patients. Here patients are able to see members of the Multi-disciplinary team and the Nurse Specialist at a single hospice based clinic.Following this success the team were keen to extend the services to other long term condition groups. Initiated by a a meeting with the Parkinson's Disease Society – including some of their patients – it was agreed to host their support group which would include a weekly gentle exercise group. This commenced following a launch day.The Day Hospice more recently piloted a Chronic Obstructive Pulmonary Disease (COPD) programme. The aim being to empower patients and help them gain control of their situation as they experienced disease progression. The programme which was done in partnership with the COPD specialist acute team and the hospice team set out a 6 week programme where patients were offered information, time and support. They dealt with issues such as fatigue, breathing exercises and discussed concerns around Preferred Priorities of Care and Advanced Care Planning using a multi-disciplinary approach.All the initiatives were matched against the QIPP agenda. Following the COPD programme five of the nine patients have accessed the day hospice. The staff and volunteers within the hospice have gained education from the specialists involved and each of the stakeholders/partners have had positive feedback from the users of the services. Moreover patients are also being introduced to other services within the hospice.
Trains boats and planes
Authors: Henderson Barbara , Steven Anne 
Published: September 2011

IntroductionChildren's Hospice Association Scotland (CHAS) is a charity that is the sole provider of children's hospice services in Scotland for children and young people with life limiting conditions. CHAS at Home was developed to support families, across Scotland, at home in times of crisis, at end of life, and to support families who live in rural and remote areas. The journey to one of CHAS's two children's hospices can become impossible due to the child or young person's condition, or the distance making the journey impractical.AimsCHAS aims to offer families a choice in their place of care, no matter where they live in Scotland; including the north, the islands; Orkney, Shetland and Hebrides. Scotland is 31 510 sq miles in area, it is 274 miles long and has 130 inhabited islands.DiscussionFor families who live a distance from their nearest hospice the journey can be traumatic for the child or young person especially as their condition deteriorates and their care needs increase. Imagine a 10 h journey, involving a ferry crossing, that includes administering medications, gastrostomy feeds, suctioning, personal care and more. All this can make the journey impractical and intolerable for the whole family. CHAS can relieve this by offering to take the ethos and care from the hospice to their home. A key to the success of this model of care is working in partnership with the local community teams. For the team providing this service it can mean a trip by train, boat or plane and nights away from home, however the team consider it a privilege to be able to support families in this way.ConclusionCHAS is committed to providing a service to families wherever they live in Scotland no matter how remote. The families say “just to know that CHAS is there for us is amazing”
Poetry and creative writing in palliative care: an alternative approach to communication
Authors: Haraldsottir Erna 
Published: September 2011

Aim of projectTo explore whether participating in poetry reading and/or creative writing sessions within a hospice has a positive impact on patients.MethodFunding from the Scottish Art Council enabled a Hospice to work with two poets facilitating five poetry reading sessions and seven creative writing sessions. All sessions were co-facilitated by a clinical nurse specialist in palliative care. The poetry reading sessions included a poet reading a wide range of poetry, including requests from patients. After each poem space was created for patients to respond to the poems and discussion was encouraged. The creative writing sessions were facilitated by a poet who assisted patients with writing their own poems through providing a prompt and structure for the writing. A specific focus was chosen for each session, for example ‘places we know’, ‘houses we have lived in, and ‘favourite objects’. Each session lasted for one and a half hours. The sessions were evaluated by staff and patients.Results25 patients attended one or more than one session with staff members attending poetry reading sessions.Patients' and staffs' comments on the sessions were themed into: positive occupation, bringing back memories, sharing of stories and fostering dialogue.ConclusionCreative writing and poetry within palliative care provides an alternative approach to communication that facilitates social interaction and ‘sharing of stories’ that may otherwise not occur. This alternative approach to communication provides common ground and a unique way for the patients to connect with each other.
Learning at your fingertips
Authors: Scott Ros 
Published: September 2011

IntroductionCHAS is Scotland's only children's hospice organisation and has three hospice services: Rachel House in Kinross, Robin House in Balloch, and CHAS at Home which operates from both hospices and has a small base in Inverness. With 235 staff across 11 sites and 900 volunteers throughout Scotland, access to consistent high quality learning opportunities can be a challenge, regardless of role.AimsThe aim of the project was initially to meet our statutory/mandatory training needs and to develop a structured and accessible blended learning approach. One key component of this was the development of online learning modules for all statutory/mandatory areas.MethodsResearch was undertaken to find the best platform for CHAS to use which would be easy to create and upload module materials, and straightforward for staff and volunteers to use. It was also important for the learning to be validated through short assessments.ResultsInitially eight modules were developed and rolled out to all staff, including topics such as Fire Safety, Infection Control, Moving and Handling Objects and Display Screen Regulations. After initial apprehension staff quickly began to see the benefits and some even described the process as ‘addictive’! Staff began to see the possibilities for supporting other professional learning through on-line learning, and have prepared new modules.ConclusionThe results of our work with online learning far surpassed our initial expectations. Staff are really engaged with the process both of completing modules and with many new ideas for topics. It has also encouraged greater use of electronic communication in CHAS. Currently there are 14 modules available to staff: topics as Lone Working and Bereavement have been added. We are also about to begin the process of rolling out statutory/mandatory modules to volunteers.
Providing a seven day community clinical nurse specialist service: a 6 month pilot
Authors: Grady Anna , Milton Elisabeth 
Published: September 2011

IntroductionIn response to the challenges faced by patients and carers out of hours, the service provided by the Community Clinical Nurse Specialist (CNS) team in an inner city hospice in Scotland was extended to cover 7 days per week. While this was recommended by NICE in 2004, there is little published information around the implementation and evaluation of this service development.Aim of the pilotTo examine the need for and benefits of an enhanced 7 day service by the Community CNS team.MethodThe team of 6.5 WTE staff piloted 7 day working for 6 months. Activity data was collected on planned and unplanned urgent contacts. Acceptability of the service to both staff and patients and families was sought.ResultsThere was an average of 5.3 urgent contacts per weekend (range 0–12). 36% of these contacts were unplanned, with the majority of these (68%) being made by a family member.Key benefits were seen to be: specialist symptom management 7 days per week, supporting patient choice in place of care, emotional support to patients and families and improved team working.DiscussionSuccessful management of change is dependent on a number of key factors. With these in place, resistance to change was overcome and staff were both enthusiastic and willing to embrace a new way of working. To support this service development an additional 0.5 WTE member of staff was recruited.Initially data was only gathered around the “unplanned urgent” contacts. The team recognised that they could also incorporate appropriate routine activity, negotiated with the patient and family.ConclusionThe pilot demonstrated need, was highly acceptable to staff, patients and families and its delivery was sustainable in our team. Seven day working is now established in the delivery of our Clinical Nurse Specialist service.