bluuebunny/crossref_metadata_2025_split huggingface dataset:
Putting patients in control
Authors: Dickinson Carole , Tydeman Julie 
Published: September 2011

BackgroundThe Nightingale Macmillan Unit is a purpose built 20 bed specialist palliative care unit within an acute hospital. Staff identified that patients with impaired upper limb function had difficulty or were unable to summon assistance of staff on the ward. In addition, some patients who had environmental controls at home reported to feel extremely vulnerable and dependant during respite admissions, as there were no such facilities at the unit. During respite admissions we wish to maintain the patients function and condition to ensure that they can return home with the pre-existing care package and equipment.MethodsHaving identified the problem, discussions were had with patients from the respite list as to what equipment they used at home, and what was most important to them. A number of different staff groups then worked together to obtain a range of non-standard nurse call switches and an environmental control system to facilitate control of electrical appliances.ResultsPatients with impaired upper limb function can now use the nurse call system to summon assistance when they need it. Patients now also have control over lighting, TV, radio and a fan.DiscussionThese improvements have enabled patients with impaired upper limb function to feel more empowered during their respite admissions. The non-standard nurse call switches have allowed patients to summon assistance when they need it. Therefore patient's privacy and dignity are greater and demands on nursing staff time are reduced. “When I wake up in the night, I can now turn on the light instead of being stuck in the dark” Gordon (patient). It has been both a positive and rewarding experience for staff to be able to use technology to promote patient independence and quality of life.
End of life care for people with dementia: the challenge for specialist palliative care
Authors: Alsop Anne 
Published: September 2011

IntroductionThere are 613 661 people with dementia in England, rising to over a million by 2030, an increase of 72%. They should have the same access to palliative care as others but many are not receiving it. Specialist palliative care (SPC) should consider how it can help to achieve a ‘good death’ for them.AimsTo examine the end of life care needs of people with dementia; to identify gaps in the provision of care and to develop a hospice strategy.MethodsA literature search identified issues in the care of people dying with dementia. Consultation with providers of care confirmed these findings. A focus group of bereaved carers provided insight into the experience of caring for someone dying of dementia. Models of care from other hospices were explored to generate ideas. Hospice teams were encouraged to share experience of caring for these patients.ResultsEmerging issues were the risks associated with hospital admission; symptom burden; the emotional impact of decision making on families and uncertainty about the role of SPC. Effective communication; advance care planning; symptom assessment; recognition of dying and support for families were identified as essential for improving care.DiscussionA hospice strategy was developed, based on different levels of SPC. Most people with dementia need generalist palliative care, with SPC providing education and consultancy for professional carers. A practice development role with partnership working between the hospice and care providers is being explored. The hospice should also create a dementia friendly environment for people requiring its services.ConclusionThe increasing incidence of dementia and the inadequacy of palliative care provision challenges SPC to find innovative approaches to improve the experience of dying. This project makes a start in meeting the challenge.
Innovation in nursing practice: developing a nurse led community unit
Authors: Kirkland Gill , Ekin Chris 
Published: September 2011

In 2010 the Douglas Macmillan Hospice was successful in receiving a government grant to build an eco-friendly environment which houses three separate independent living units. We were keen to develop on the fundamental aspect of total holistic care, which, for many palliative care patients means good nursing care.The aspiration was to move away from the traditional model of care, to a model which delivers choice to the patient, offering a quality service which develops methods of reaching out to patients with a more rapid access, in line with the End of Life Strategy.The aim was to provide an alternative place of care for a variety of patients. We sought to provide excellent end of life care, if it was the patients' choice not to die at home, respite for carers, transitional care for young adults and also excellent rehabilitation to encourage independent living as a step down from the in-patient unit.The innovation was driven on several aspects; we wanted the unit to be nurse-led. We were able to utilise the community palliative care team who were already qualified as independent nurse prescribers, to manage any symptom issues and undertake clinical nursing tasks. The Healthcare Support workers would expand their role through education and training to support the patients to self medicate and to be a second checker for controlled drug administration. Our team of volunteer's would undergo training and education to support the Healthcare Support workers to provide basic personal care.The units are due to open in April 2011. We hope to offer quality individualised care for patients and their family which will meet a local need and be a unique service promoting the hospice philosophy. We plan to evaluate through capturing user views and clinical audit.
Putting the child and family first: developing a clinical network for children's palliative care
Authors: Maynard Linda , Rennie Tracy , David Vickers David 
Published: September 2011

National reviews have identified the need to provide 24/7 access to clinical expertise especially around the time of end-of-life. In the East of England locally commissioned reviews have recommended improvement in collaboration and joined-up clinical working between voluntary and statutory sectors.This presentation describes a DH £30 million Children's Palliative Care Fund project to develop a managed clinical network of services throughout the East of England and reports how challenges created by cross boundary working can be overcome.A series of externally facilitated workshops, one for nursing leaders and one for medical leaders followed by a joint workshop aimed to develop solutions in an environment where there is little new funding, little recognition of the complexity of children's palliative care, and in a region where there is no specialist in paediatric palliative medicine.Hurdles identified in the workshops were:▶Ineffective communication processes and information sharing▶Acceptability to families of distant advice▶Professional preciousness and boundaries▶Conflicting priorities▶Achieving critical mass of clinicians for a 24/7 rota▶Commercial sensitivity – competition among providers▶Organisational and clinical governance arrangements▶Contractual framework and financial commissioning.Children's Palliative Care is a low volume specialty, and so is best developed by network working across a larger geographical area, utilising the skills of Paediatricians with special expertise, Children's Community Nursing Teams and Children's Hospice Nurses both in their respective local areas but also across a wider geographical patch. Hospice Services, with their cross boundary catchment area, and relationships with NHS Commissioners, are well placed to facilitate such developments.Further thought needs to be given to the balance needed between specialist services (nurse consultants and medical consultants in paediatric palliative medicine) and the more local services, and how the latter can contribute to provision of a specialist service.
Supporting the whole family: caring for children when a parent is dying
Authors: Cardy Claire , Dempster Tracie , Petty Glynis , Cowan Margaret-Mary 
Published: September 2011

With an increasing number of younger adults with a young family being referred to our adult hospice service, there was a noticeable gap in the provision of appropriate support for these children. As a provider of palliative care services for both adults and children, there were opportunities to offer holistic, integrated care designed to meet the individual needs of all our patients.The staffing includes a Play Therapist and a team of Nursery Nurses who had predominantly worked within the children's service in the home setting. However, their skills and expertise were accessible to the whole service, including children of adult patients. A programme was introduced to promote awareness among the adult teams of utilising these staff further. In the first 6 months, the Play Therapist has provided specialist interventions with 14 children of adult patients (not including bereavement support). The Nursery Nurses have so far delivered childcare support with 7 children of 4 patients. These childcare sessions have proved invaluable to the families receiving them; for example, helping at home when the patient has been feeling ill after chemotherapy, or looking after the children to allow other relatives to visit the patient in the Hospice Inpatient Unit. They have also developed therapeutic relationships with the children and enabled a sense of normality and routine at a time when there is a great deal of disruption, including trips out or assistance in accessing regular clubs or groups.Specialist palliative care has always encompassed support for the whole family, not just the patient. The additional support for children has proved beneficial to the families cared for, and the evaluations so far have been extremely positive. There are plans to develop and extend this service in order to meet the holistic needs of this group of adult patients.
Care team volunteers
Authors: Bridge Wendy , Barklie Kate , Westmorland Sarah , Cook Amelia 
Published: September 2011

IntroductionAs a hospice for children and young adults we wanted to find creative, cost effective ways to enrich patient lives, using volunteers as befrienders to promote normalisation which research shows is a priority for this population.AimsWe aimed to recruit befriending volunteers with a developed skills set, to ensure flexibility and enhance patient experience. We aimed to set up systems to recruit, train, support, and enable volunteers to work safely.MethodsSemi-structured interviews with patients and staff revealed a demand for volunteers in a befriending role. The appointment of a Care Team member to act as a link between the care team and volunteers was essential as previous attempts to introduce volunteers to care areas were unsuccessful. Volunteer roles were widely advertised and client centred interviews enabled us to select the right personalities and understand each applicant's skills. Volunteers are required to attend 26 h of training including familiarisation with the hospice before commencement.ResultsThe skill set and diversity of volunteers has added greatly to hospice life. Volunteers skills include massage, hairdressers, musicians, doctors, actors, and students thus expanding the range of services we can offer to guests. Committed volunteers may be offered the opportunity to undertake further training and fulfil an ‘Advanced Volunteer’ role.DiscussionThe project has experienced challenges in ensuring that all staff embrace the benefits of care team volunteers. Introducing ‘Managing Volunteers’ training for staff helped to address this. Future plans include extended training and setting more rigorous induction to encourage only the most committed volunteers.ConclusionWith stringent selection, training and supervision care team volunteers can significantly enhance patient experience through normalisation and enhanced activities, an additional benefit has been the embedding of the hospice in our local community.
The journey from paediatric intensive care to children's hospice
Authors: Harrop Emily , Gupta Neelam , Lapwood Susie , Shefler Alison 
Published: September 2011

IntroductionApproximately 2/3 of PICU patients who die, do so as a result of withdrawal of treatment, most of these deaths occur on PICU. We have set out to examine referrals from PICU at the John Radcliffe Hospital, to Children's Hospices over a 5-year period.Aims▶Investigate year-wise trend in PICU referrals to Hospices▶Examine the outcomes▶Examine the process of transfer to non-hospital settings▶Inform practice.MethodsRetrospective review of case notes for all children referred from a large tertiary level UK PICU to Children's Hospices over a 5-year period. Information was collected both from PICU and from the two hospices involved.ResultsA total of 12 children were transferred, with referrals increasing over time. 2/3 of the children were aged 2–8 years, and the mean stay on PICU prior to transfer was 13 days. The average time from initial referral to transfer was 4 days. Discussions about limitation of treatment occurred after an average of 9 days of ventilation, with 2/3 of families having had prior contact with the palliative care team involved. 1/3 the patients were still on invasive ventilation at the time of transfer, and all of those were escorted by a PICU Consultant, of these, ¾ were extubated within 30 min of arrival at the hospice. Overall, eight children died following transfer, but four children (1/3) survived for > 2 weeks.ConclusionIt was pleasing to confirm an increase in joint working between PICU and Children's Hospices. Consistent with other studies, we have shown that 1/3 of children transferred for end of life care, initially survive. Information gained from reviewing these cases contributed to setting up a working party to produce a care pathway to support extubation within a children's palliative care framework, which is due to be published this year.
Enhancing user engagement
Authors: Cook Amelia 
Published: September 2011

IntroductionThis child and young adult hospice has a strong commitment to user engagement to meet CQC requirements and as an essential component of a patient centred approach.AimsA 6 month secondment reviewed current practice and planned future work. The priority was to ensure that all ages and abilities were included in participation.MethodsCurrent practice was compared with other hospices and assessed using the Children's Hospices UK User Participation Toolkit. Writing KPIs clarified goals. The patient group was segmented by age and ability to ensure that appropriate methods of engagement were used. Patients and parents were surveyed using questionnaire or semi-structured interview.ResultsA range of options were presented by parents and patients including the use of social media, and online communication. Focus groups are successful regarding specific issues only, but less useful to evaluate ongoing experience. Recording the anecdotal, and engaging care staff in doing so, adds richness to the more formal methods of engagement.DiscussionThe ability to offer feedback to a neutral person (eg, a volunteer) encourages participation. Use of communication resources designed for specific groups, such as those with learning disabilities promotes engagement. For some this may be the only time they have been asked their opinion and they may need to be empowered. However it is important to manage expectations, it is not always possible to act upon feedback gathered.ConclusionMeaningful user engagement with this diverse client group requires creative methods to enable all to participate. Being able to draw on the broad skills of the care team and dedicated staff time is required to ensure that user views are listened to. How the organisation responds to the users' views and the rationale must be feedback to the user. Further work should extend to other service users, for example, volunteers and fundraisers.
Prolonged parental access to their child's body following death – a help or hindrance in the bereavement outcomes
Authors: Cornish Liz 
Published: September 2011

IntroductionThe first children's hospice was established 30 years ago and included a cooled bedroom where the child's body could be cared for in the hospice until the funeral. This was seen as a crucial aspect of the care extended to grieving families, allowing them to say goodbye to their child in their own way over several days, within a supported environment.Problem identifiedThis practice has been replicated in over 40 subsequent children's hospices, but minimal research has evaluated the impact of this aspect of support on families. Thus a service is being offered which has not been validated as beneficial. Policies guiding this aspect of service delivery are based on practice experience and anecdotal evidence with practices differing across the country.MethodologyA literature review was carried out to identify what is known about the impact on bereavement outcomes for parents who have prolonged access to their child's body beyond the immediate hours following death. Related literature looking at the impact of viewing stillborn babies or adult bodies following unexpected death and post organ donation was included.FindingsWhile most literature suggested unspecified benefits to bereaved relatives from accessing dead bodies, there was one notable exception in stillbirth studies which indicated higher levels of anxiety and depression in mothers who had held their stillborn baby. Few studies measured the impact of access to the body on bereavement outcomes.RecommendationsThere is urgent need for research to identify the impact of this service on the bereavement outcome of parents, looking at both benefits and potential risks. This research should inform service development in terms of governance within children's hospices. Furthermore, new evidence will be added to the understanding of factors influencing bereavement outcomes for parents.
End of life quality matters (EOLQM): a quality improvement programme in Hertfordshire
Authors: Garrood Elizabeth , Russell Sarah 
Published: September 2011

IntroductionThe EOLQM is a collaborative education project between a local community health service and hospice. It was designed to encourage participants to identify an integrated approach to planning, contracting and measuring end of life care (EOLC) service delivery across health and social care.AimsTo facilitate a more collaborative approach to EOLC and increasing insight/empathy into the work of other professionals working in end of life care.Methods4½ days and 1 full day for course evaluation and project presentationDay 1: Introduction to the programme/Audit/Research/EvaluationDay 2: Multi professionalDay 3: Change ManagementDay 4: Project workDay 5: Advance Care Planning and project presentations.Results16 participants attended from learning disabilities, district nursing, palliative care and mental health providers.Pre and post course questionnaires showed a confidence increase in use of audit, working across boundaries and team dynamics. The course was highly evaluated. Project areas: manual handling training programme for families/informal carers, design, end of life pathway for learning disabilities, research and review of the key worker programme, design of an effective and standardised document to communicate advance care plan wishes, re-launch of the Liverpool Care Pathway.DiscussionEOLQM brought together staff from a variety of disciples and settings enabling them to discover and work together on projects to benefit patients at the end of life. By focussing on measuring and evaluating what we do across boundaries, it enabled participants to start to influence strategy in their own work setting.ConclusionEOLC is not just concerned with symptom control and communication skills. It also needs to be measured and evaluated and those working at the coal face have their part to play in this – not only through providing data but also designing how and what data should be captured.
Three years of living with grief – reviewing a series of meetings for people who have been bereaved
Authors: Smale Una , Spence Simon 
Published: September 2011

IntroductionHighland Hospice Bereavement Support Service offers varied support to individuals and families. For the past 3 years, in order to widen the support options available and recognising people's differing needs, we have been offering Living With Grief, a time limited group-based support.The current programme consists of:▶Weekly sessions of 2 h duration, offered over an 8 week period.▶Groups co-facilitated by two staff members; both accredited counsellors, with extensive group work experience.▶Group membership mixed in circumstances of bereavement, age, gender and ethnic/cultural background.▶‘Closed’ group membership; all members attending all meetings.AimTo review the development of the Living With Grief programme. Particular attention is paid to how the programme has adapted in response to both feedback from the participants and the facilitators' experience.Method▶Review the current provision.▶Review participant evaluation over the 3 year period.▶Review facilitator experiences.▶Review changes already made as a result of this feedback and evaluation.Results▶The programme has changed significantly over the 3 year period.▶The changes have resulted from participant feedback and facilitator experience.▶Feedback from later participants confirmed the desirability of the earlier changes and suggests a constructive dialectic process of development.As a result of this project review we plan to continue offering Living With Grief as a regular feature of the Highland Hospice Bereavement Service. The findings and recommendations from this review will be of interest to other hospices involved in developing and/or reviewing group support provision in bereavement services.
Seamless service on the isle of man
Authors: Bloomer Christine 
Published: September 2011

The hospice movement has engendered a multi-disciplinary team (MDT) approach to the delivery of palliative care and the evolvement of the Palliative Care Clinical Nurse Specialist (PCCNS). Advancements in palliative care and better symptom management have seen a change in the PCCNS role so that patients and carers are now often seen from diagnosis to post bereavement. It is ever more essential that PCCNSs are skilled in co-ordinating and communicating with the MDT, patients and families.With this in mind in 2008 a review of the islands PCCNS service was carried out to identify any gaps in the service; explore user's perceptions and expectations; consider the team leader role and produce recommendations to service development.At the time, four community PCCNSs were attached to GP surgeries within a geographical area, while two PCCNSs provided a service to the local hospitals. The comprehensive review confirmed that the service was valued by patients and health professionals on the island, but highlighted that more time was needed for the team leader to provide leadership, supervision and planning and for the PCCNSs to embrace education, audit and consultancy work.It was felt that an integrated nursing approach (where the PCCNSs followed their patients both in hospital and the community) would eliminate duplication of effort in gathering information and relationship building, thereby releasing time for other duties and improving communication. Caseloads were redistributed and a 6 month pilot was initiated.Service users and the PCCNSs were canvassed at the end of the pilot. The general feedback was that the patient experience was better and that communication and the PCCNSs job satisfaction had improved. The team elected to continue working in this new way therefore enhancing the patient and family experience and providing a seamless service.