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IntroductionThe HOPSCOTCH study ‘Helping Optimise Primary Care Support During Transition From Children’s Hospice Care’ aims to develop a toolbox to enable engagement of primary care services in the care of young people with life-limiting conditions (LLC) with a specific focus on the point of transition from children’s hospice services.Methods and analysisIndividual interviews will be held with young people with LLC, their families and healthcare professionals (HCPs). In alignment with Experience Based Co-Design (EBCD) methodology, extracts of film and audio from young people and family interviews will be combined to professionally produce a ‘catalyst film’ highlighting key points and experiences before, during and after the transition from children’s hospice care. Role-specific workshops will be held with young people with LLC, their families and HCPs working in primary care, children’s hospices and adult hospice services. The catalyst film will be used in feedback workshops to prompt prioritisation of key issues to take forward into toolbox development in a shared young people, family and HCP workshop. A documentary analysis of resources currently used to support transition and communication between care settings will support contextual understanding of the transition process. Young people, parents and professionals have shaped and continue to have influence over the study delivery as advisors alongside a multidisciplinary steering committee.The study design has been guided by the UK Medical Research Council complex intervention framework. Intervention development draws on the principles of EBCD and is theoretically driven by the Behaviour Change Wheel.Ethics and disseminationThe study is registered with the UK’s Clinical Study Registry (ISCTRN75964234).Ethical approval was obtained from Wales 3 ethics board on 2 July 2025 (IRAS ID 334486). This study will include ongoing dissemination and knowledge transfer to key audiences (young people, parents, service providers, commissioners) via publications, national bodies, knowledge exchange events, web-based platforms, social media and clinical/academic forums.

Background Deprescribing has been defined as the planned process of reducing or stopping medications that may no longer be beneficial or are causing harm, with the goal of reducing medication burden while improving patient quality of life. At present, little is known about the specific challenges of decision-making to support deprescribing for patients who are accessing palliative care. By exploring the perspectives of healthcare professionals, this qualitative study aimed to address this gap, and explore the challenges of, and potential solutions to, making decisions about deprescribing in a palliative care context. Methods Semi-structured interviews were conducted with healthcare professionals in-person or via video call, between August 2022 – January 2023. Perspectives on approaches to deprescribing in palliative care; when and how they might deprescribe; and the role of carers and family members within this process were discussed. Interviews were audio-recorded and transcribed verbatim. Reflexive thematic analysis enabled the development of themes. QSR NVivo (Version 12) facilitated data management. Ethical approval was obtained from the NHS Health Research Authority (ref 305394). Results Twenty healthcare professionals were interviewed, including: medical consultants, nurses, specialist pharmacists, and general practitioners (GPs). Participants described the importance of deprescribing decision-making, and that it should be a considered, proactive, and planned process. Three themes were developed from the data, which centred on: (1) professional attitudes, competency and responsibility towards deprescribing; (2) changing the culture of deprescribing; and (3) involving the patient and family/caregivers in deprescribing decision-making. Conclusions This study sought to explore the perspectives of healthcare professionals with responsibility for making deprescribing decisions with people accessing palliative care services. A range of healthcare professionals identified the importance of supporting decision-making in deprescribing, so it becomes a proactive process within a patient’s care journey, rather than a reactive consequence. Future work should explore how healthcare professionals, patients and their family can be supported in the shared decision-making processes of deprescribing. Trial registration Ethical approval was obtained from the NHS Health Research Authority (ref 305394).

Background/objectives The role of palliative care in the support of patients with neuromuscular disorders (NMDs) is generally recognised in spite of the scarcity of condition-specific evidence in the literature. Methods We have focussed specifically on palliative and end-of-life care for patients whose neuromuscular disease has an impact on their respiratory function. Reviewing the literature, we have examined where existing palliative care knowledge can be applied to the specific challenges faced by patients with NMDs, identifying where lessons learnt during the management of one condition may need to be judiciously applied to others. Results We highlight lessons for clinical practice centring on six themes: management of complex symptoms; crisis support; relief of caregiver strain; coordination of care; advance care planning; and end of life care. Conclusions The principles of palliative care are well suited to addressing the complex needs of patients with NMDs and should be considered early in the course of illness rather than limited to care at the end of life. Embedding relationships with specialist palliative care services as part of the wider neuromuscular multidisciplinary team can facilitate staff education and ensure timely referral when more complex palliative care problems arise.

Impaired swallowing can lead to malnutrition, dehydration, choking, reduced quality of life and death.5–7 Because so many people are at risk of developing AP, a significant emphasis of this Statement is on prevention. [...]microaspiration due to abnormal swallowing results from a wide range of pathologies, and so heterogeneous patient groups are included in published studies on AP. Every hospital and care home should have at least one oral health ‘champion’ promoting good oral healthcare. Oral examination should be performed in all hospitalised patients at risk of AP or with suspected AP, and at least weekly in care home residents, checking for infection (eg, candidiasis), quality of dentition, food residue and cleanliness of mucosal surfaces.

Why did you do this work?With advances in paediatric care and a pressurised health system, conflict and tension can arise and lead to a breakdown in relationships. Children with medical complexity are particularly vulnerable. Recent high-profile cases exemplify how conflict can rapidly escalate. Ultimately care is compromised, with a negative impact on family and staff wellbeing.Our 2019 study, cited by the Nuffield Council on Bioethics in ‘Disagreements in the care of critically ill children’, identified that sources of tension, particularly conflict between staff and families, was highly prevalent among inpatients.1 2 We subsequently introduced hospital-wide interventions and attempted to measure their impact.What did you do?In our 12 ward tertiary children’s hospital five interventions were introduced between 2020-23 centred around a framework to support families and staff: 1) training >400 staff in early recognition and intervention of conflict via the Medical Mediation Foundation,3 2) enhancing use of the Clinical Ethical Advisory Group, 3) introducing palliative care services for children, 4) running safeguarding surgeries, and 5) developing a multi-disciplinary hub to support teams when tensions escalate.Using the same methodology as in 2019, we prospectively conducted a twice weekly survey on nursing and medical teams over a four-week period in May/June 2024 for all children admitted for ≥5 days (n=138 of 1290 total admissions). Surveys were devised via a multidisciplinary focus group to capture and measure sources of tensions for each patient (presence of staff-family conflict, staff-staff conflict, ethical challenges, end-of-life issues and safeguarding concerns). Baseline clinical data were extracted from electronic patient records.Institutional governance board approved this service evaluation study (ref. 16790).What did you find?Post intervention, prevalence of tension reduced from 65/153 (42%) children to 42/138 (30%) (X2 4.5, p=0.03), with staff-family conflict predominating (figure 1). While all sources of tension numerically reduced, only safeguarding concerns achieved statistical significance (18% to 3%, X2 17.6, p<0.0001).Abstract 8173 Figure 1Prevalence of tension in children with impatient stay of ≥5 days before and after interventions[Figure omitted. See PDF]The top cited reasons in 2024 for staff-family conflict were ‘communication breakdown’, ‘treatment disagreements’ and ‘unrealistic expectations’; and for staff-staff conflict ‘communication breakdown’.Co-morbidities and length of stay continue to be associated with tension. Post-intervention, there were more children with ≥2 co-morbidities (59% vs 27%, X2 29.0, p <0.0001) and, despite this, tension in this group reduced 55% to 38% (X2 4.84, p=0.028).What does it mean?In our single centre pre/post service evaluation, we found an association between multi-modal hospital-wide interventions and a reduction in tension.There are significant limitations to capturing the nuanced and multifaceted concepts of conflict and tension in healthcare. Applying multiple interventions over a long period of time, including with pandemic interruptions, introduces confounders. Future studies are needed to assess reproducibility, and measure patient and family experience.ReferencesJesmont C, Wood K, O’Brien C, Tse Y. Prevalence and sources of tension in paediatric inpatient care. Arch. Dis. Child. 2021 Dec;106(12):1238-1239.Nuffield Council on Bioethics. (2023) Disagreements in the care of critically ill children. Available at: https://www.nuffieldbioethics.org/publications/disagreements-in-the-care-of-critically-ill-children-2Forbat L, Barclay S. Reducing healthcare conflict: outcomes from using the conflict management framework. Arch. Dis. Child. 2019 Apr;104(4):328-332.

Learning disability is the preferred term used in the UK to refer to individuals who have ‘significantly reduced ability to understand new or complex information, to learn new skills’ and a ‘reduced ability to cope independently which starts before adulthood with lasting effects on development’.1 Individuals with learning disability represent a widely heterogeneous group of people and can be associated with a broad range of primary diagnoses and comorbidities.2 There is no definitive record of the number of people with learning disability in England. A series of measures have been introduced by the National Health Service (NHS) to help improve the identification of people with learning disability.4 The life expectancy of people with learning disability is reduced compared with the general population; only 37% of adults with learning disability live beyond 65 years of age compared with 85% of the general population.2 Pneumonia is the most common cause of death among adults with learning disability and is also a common cause of death in CYP with learning disability, with bacterial pneumonia accounting for a significant proportion of these (adults 24%, children 21%).5 A further 16% of adult and 3% of paediatric deaths in the learning disability population are caused by aspiration pneumonia (AP).5 CAP is a major contributor to the increased hospitalisation risk that has been described for people with learning disability and results in longer hospital stays than the general population.6 People with learning disability also experience increased rates of repeated admission secondary to CAP.7 As CAP is a major cause of death in people with learning disability, prevention, early detection and proactive management are key to reducing mortality from avoidable causes.8 It is important that public sector organisations make reasonable adjustments in their approach or provision to ensure that people with learning disability have equitable access to good quality healthcare.9 10 Scope Learning disability is variously defined. [...]the statement is structured with an emphasis on risk factor identification and instigation of preventive measures. Engagement and assessment Engaging effectively with the person with learning disability and their parents/carers is fundamental to the early identification of CAP risk factors and the judicious implementation of preventive care and treatment.

IntroductionThis study is part of a wider evaluation of a pilot to improve the experience of young adults with life-limiting conditions as they transition to adult services. The project was funded by Together for Short Lives. We developed a multidisciplinary outpatient clinic supporting young people aged 16–25 with life-limiting conditions, based in an adult hospice. Adult palliative care multidisciplinary teams (MDT) have many of the transferable skills and resources required to meet the needs of young adults with life-limiting conditions. By exploring the clinical needs encountered by the team in this project, we hope to improve palliative clinicians’ confidence in their ability to meet those needs, and to highlight areas where practice may need to be adapted or developed.MethodsThe Transition Team recorded in-depth team reflections around activity and learning over a period of 12 months between March 2019 and March 2020. The reflections concerning all clinical interactions with 7 patients were collated and analysed for themes. The themes were then developed alongside literature and expert opinion to form recommendations for other adult palliative care teams who wish to support young adults.ResultsOverall, three major themes were identified from the team reflections: Clinical learning, Carer support, and Relationships with other clinicians.The subthemes within clinical learning were:Role in identifying unmet needs and signposting to other servicesIdentifying dying in patients with long term disabilitySafe management of complex symptoms when multiple teams are involvedAnticipatory care planning.Recommendations were developed highlighting areas where additional training and research are needed as well as areas to prioritise in service development.ConclusionsReflecting on clinical interactions with young adults with life-limiting conditions enabled the project team to identify priorities for learning and further development of services for this patient group.

ObjectivesPalliative care needs to embrace research to guide service development and effective symptom management. Healthcare professionals often feel research is too burdensome for patients who have poor performance status or are near the end of life. Many studies exclude these groups from participating.We aimed to identify whether specialist palliative care inpatients would wish to take part in research and whether preference varies according to study design, demographics, diagnosis, performance status and prognosis.Methods100 inpatients in two National Health Service specialist palliative care units and one independent hospice in the Northeast of England completed a short questionnaire about preferences for involvement in research.Results92% of participants stated they were interested in being involved in research. This was mostly unaffected by age, diagnosis, prognosis, performance and socioeconomic status. Three-quarters were within the last 3 months of life. Simple questions or interviews were the preferred methodology, whereas only half of patients would want further investigations or additional medications and fewer still wanted to participate in online activities, lifestyle change or group activities.ConclusionsPalliative care inpatients welcome the opportunity to be involved in research and should not be excluded on the grounds of advanced disease, poor prognosis and low performance status.

Long-term dependence on non-invasive ventilation (NIV) without time for advance care planning can result in significant complications that may require innovative management strategies. We present the case of a man who was admitted with respiratory failure and required NIV. Despite effective treatment for community acquired pneumonia, attempts to wean NIV failed. While dependent on NIV, a diagnosis of motor neuron disease was made. Time without ventilation was not tolerated and consequently complications of: facial pressure ulceration, nasal septal prolapse, inspissated secretions and failure to feed occurred. This case illustrates the severity of complications that can result from NIV dependence; however, it also details how these can be effectively managed by the hospice multidisciplinary team, with support from experts both within and external to the hospice enabling the acquisition of appropriate skills and knowledge.