St Christopher's Hospice

ABSTRACT Introduction Families of individuals who require inpatient neurorehabilitation following brain injury often have expectations of recovery that differ from treating healthcare professionals. This can hinder collaboration and create tension. This study aimed to explore healthcare professionals’ experiences of family expectations and identify ways to improve practice. Methods Semi-structured interviews were conducted with healthcare professionals at a Level 1 neurorehabilitation unit in England. This National Health Service unit is commissioned to see patients with highly complex needs following a brain injury. Data were analyzed using reflexive thematic analysis. Results Eighteen healthcare professionals from a range of disciplines participated, with physiotherapists most highly represented (n = 5). Analysis generated three key themes: ‘the promise of rehabilitation,’ ‘confidence with complexity,’ and ‘developing mutual understanding.’ Participants described differing expectations as a common and emotionally demanding aspect of their work, often complicated by prognostic uncertainty. Healthcare professionals recognized hope as a valid and often protective response to a life-altering brain injury. Discussion Improved mutual understanding may require a multi-component intervention to aid communication pre-admission, identify family support needs, support patients requiring disability management, provide emotional support to HCPs, and to address uncertainty. It is critical to first deepen understanding of family and patient perspectives on this topic.

<h3>Background</h3> Having signed the armed forces covenant and received a silver employer’s recognition award, this set us thinking. Which other organisations might our community be involved with that we are not aware of? We discovered that our locality has a significant number of Masonic lodges and Freemasons in our catchment area but as an organisation we knew nothing about how we could network with the Masonic community to help support their Brethren. <h3>Aims</h3> To understand our population and improve the support offered to our patients with Masonic connections. <h3>Methods</h3> We met with the Masonic leads for our locality and spoke to them about their community and what support they offer. We learnt that there are exceptionally high numbers of Freemasons in the North Yorkshire area. We learnt about the emotional, practical and financial support that they offer. We created and delivered a development and education programme for our staff which was presented to National Masonic leads for ratification. <h3>Results</h3> We have been recognised by the national Grand Master as the first hospice to be accredited as Masonic Aware. We are also the first hospice nationally to be granted the right to hold a masonic meeting in our building if required to meet the needs of a specific patient who wants to attend a meeting but is unable to travel. <h3>Conclusion</h3> We have identified unmet need in a portion of our patient and family population. We have made new community networks. We have strengthened our offering to patients and families. We have educated our staff. We have ‘bust some of the myths’ and learnt something we knew nothing about but which was important to lots of people in our community. We are now working with other regions to help support other hospices on this journey to accreditation.

<h3>Background</h3> Palliative care patients are often on multiple medications including controlled drugs. Medicines wastage is a significant burden including costs of supply and safe disposal, and challenges around safe storage. Patient familiarity with medications is encouraged and patients’ own controlled drugs (POCDs) are allowed to be used with in the inpatient unit setting providing they are unopened and are correctly labelled. These are stored separately to ward stock. <h3>Aim</h3> This quality improvement project sought to reduce the quantities of POCDs wasted by implementing a self-sustaining system for utilising the drugs across three wards in the hospice inpatient unit. <h3>Methods</h3> A baseline for medications destroyed by the pharmacy on each inpatient unit ward was established. Medications were split into four categories; patches, liquids, tablets/capsules and vials. Plan-Do-Study-Act cycles 1-6 included: Baseline three months of wastage by pharmacy. Discuss staff ideas, main theme – visual reminder key. Design and implement a tool, trial on first ward for a month – collect data Apply tool to other two wards – collect data. Permanent versions of the tool agreed – input from Communications team. Snapshot of wastage three months after one year to see if changes sustained. <h3>Results</h3> Waste of opioids decreased from (median per ward/per month): Patches 7 to 3 Tablets 265 to 38 Ampoules 120 to 56 Liquid 1921g to 434 g This was sustained for patches (2), ampoules (42), and liquids (125g) and partially sustained for tablets/capsules (81). Challenges overcome included ensuring ongoing compliance with legal compliance of CD storage, initial and sustained engagement of nursing staff, addressing worries that the quality improvement project might increase workloads and communication across the organisation. Additional data will be presented to illustrate cost-savings. <h3>Conclusion</h3> By implementing an approach that utilised visual reminders, significant reductions in waste were observed across all categories. The decrease in medication wastage was not only sustained but also demonstrated the potential for long-term cost savings and improved medication management practices.

<h3>Background</h3> Prisoners experience health needs greater than their chronological age, shorter life expectancy and greater multi-morbidity compared to those not incarcerated (Hospice UK. Dying behind bars: how can we better support people in prison at the end of life? Hospice UK; 2021). High-quality palliative and end of life care is grounded in a sound knowledge base for those supporting people with life-limiting conditions. <h3>Aims</h3> This project aims to enhance care for prisoners with life-limiting conditions in two Northwest England prisons by co-designing an education programme. <h3>Method</h3> Training needs analysis interviews undertaken in July 2024, with staff and prisoners, aligned with our regional End of Life Care Education Standards framework. A bespoke training plan covering modified framework domains; Tier 1 (buddies), 1+ (prison officers, counsellors, family liaison, clinical support workers), and 2 (senior clinical staff) was agreed by the project management group. Training includes existing sessions such as the MayFly advance care planning and communication skills programme (https://www.england.nhs.uk/north-west/north-west-coast-strategic-clinical-networks/our-networks/palliative-and-end-of-life-care/for-professionals/education/), plus bespoke sessions on symptom management. The training timetable is being agreed, with evaluation of individual sessions and the overall programme, including impact on supporting those with a terminal diagnosis. <h3>Results</h3> The training needs analysis identified a range of skills within the multi-professional workforce and buddies, whilst revealing knowledge gaps aligned with the education standards framework, highlighting the need for comprehensive training. A strong desire for palliative and end of life care training was evident across clinical, non-clinical teams, and buddies. Training evaluation will be completed by September 2025 via evaluation forms. Interviews further noted that challenges in delivering quality end of life care are not solely due to knowledge and skills gaps. <h3>Conclusion</h3> There is a clear need to strengthen palliative and end of life care in prisons. Our co-designed education programme aims to address this gap. Robust evaluation will guide refinement, ensuring it meets the needs of all learners. This model could inform future training frameworks across other prison settings. The funding was provided by a grant from the Linder Foundation managed by Hospice UK.

<h3>Background</h3> The unique needs of someone with a learning disability at the end-of-life are well understood (LeDeR Annual Report Learning from Lives and Deaths: people with a learning disability and autistic people. LeDeR Autism and learning disability partnership, King’s College London; 2022; Care Quality Commission. A different ending: addressing inequalities in end of life care. CQC: 2016). Challenges may include communication difficulties, diagnostic overshadowing, co-morbidities, and problems in expressing wishes. Services have improved but the late recognition of palliative care needs still occurs. <h3>Aim</h3> To support high quality personalised palliative and end of life care for people with a learning disability in a region of Lancashire, to reduce health inequalities, through developing a champions scheme (Skills for Health. Champions for Learning Disabilities: Enable Care and Home Support – End of Life Project. 2011). <h3>Methods</h3> Staff identified across hospice (clinical/non-clinical) and learning disability services, invited to become champions; learning disability champions in the hospice and palliative and end of life care champions in learning disability services. Roles and responsibilities aligned with the Ambitions for Palliative and End of Life Care Framework (National Palliative and End of Life Care Partnership. 2021). Full day induction included lived experience, introduction to learning disabilities and palliative and end of life care and simulation covering compassionate conversation and pain assessment. Monthly shared learning was developed, with difficult conversations, prognosticating, adapting communication/language and history of learning disabilities and a rights-based approach, delivered to date. <h3>Results</h3> Induction day evaluation demonstrated increased confidence supporting someone with a learning disability including at the end of life and meeting individualised needs. Confidence adapting communication style increased from 7.4/10 to 8.1/10, whilst meeting the communication needs of someone with a learning disability increased from 6.3/10 to 7.6/10. The opportunity to network, develop shared learning and improve clinical care was valued. Evaluation is planned for the monthly sessions and exploring case studies, where the impact of the scheme is truly realised. <h3>Conclusion</h3> Our champions scheme provides a forum for collaboration and shared learning, developing skills, with increased confidence caring for those with a learning disability at the end of life or supporting those with learning disabilities in our employment. Ongoing evaluation is required to realise the impact. We plan to evaluate the scheme more formally and consider expanding across our region.

<h3>Background</h3> In the 2022/23 Priorities and Operational Planning guidance, systems were asked to deliver virtual ward capacity equivalent to 40-50 virtual ward ‘beds’ per 100k population by December 2023. The hospice was one of the first community nurse-led palliative virtual wards. <h3>Aim</h3> To develop a 10-bed Palliative Virtual Ward to support people to stay at home where possible with the support of the hospice clinical team to provide complex and specialist palliative care. <h3>Method</h3> Following the successful development and implementation of the first community nurse led palliative virtual ward, the learning to further enhance patient care was developed to include palliative care consultant oversight and medical team support. Now in the third year of delivery, the 10-bed Palliative Virtual Ward supports complex patients who require specialist palliative care to stay at home. Working collaboratively, at place, with the three virtual wards including Acute Respiratory and Frailty, the Palliative Virtual Ward has enabled the delivery of high quality palliative and end of life care at home, where people want to be, and shares early learning to maximise development of the other virtual wards. <h3>Results</h3> St Rocco’s has supported over 300 patients to remain at home. An independent review was undertaken by Healthwatch Warrington which highlighted the benefits to patients, those important to them and partners. Qualitative feedback has been positive: ‘<i>Without the exceptional help and support that my wife and I received, I would not be able to return home. Doctors and nurses along with the volunteers, have been so professional, caring and I can’t thank them enough</i>.’ – Palliative Virtual Ward patient. <h3>Conclusion</h3> St Rocco’s Palliative Virtual Ward is an integral part of the virtual ward offer at place, ensuring equity for patients requiring specialist palliative care.

BackgroundCancers of the oesophagus and stomach are a major cause of morbidity and mortality. Research is crucial to improving outcomes. However, to maximise value and impact, areas of focus should be prioritised in partnership with patients.ObjectiveWe undertook a comprehensive analysis of UK and Ireland patient and healthcare professional (HCP) priorities for research into oesophagogastric cancers across the domains of prevention, diagnosis and staging, treatment, palliative care and survivorship.DesignA scoping exercise sourced research questions from patients and HCPs. These were consolidated and then confirmed by systematic review to represent a true research uncertainty. Research questions were scored on potential impact by an interdisciplinary group of HCPs and prioritised using a weighting derived from a patient survey.ResultsThere were 835 (395 HCP, 440 patient) respondents to the scoping (n=455) and prioritisation (n=380) surveys. Across these, 4295 suggested research uncertainties were consolidated to 92 uncertainties that were prioritised. HCP respondents represented 25 professional groups from community and hospital settings. Patient weighting changed 22.2–46.3% of priority rankings established by HCPs. All domains were represented by the 20 highest priority questions, 5 of which focused on personalising and optimally combining treatment modalities. Two other key themes related to optimising nutrition and improving quality of life during and after treatment, including in patients not cured of their cancer.ConclusionThis work highlights the impact of patient input on HCP-ranked research priorities and provides a robust list of priorities to guide funders, policymakers and researchers to support and undertake impactful research.

Background: Social homecare workers are crucial in the provision of end-of-life care but are not part of the healthcare multidisciplinary team. Little is known about why they are excluded within interprofessional working practices. Aim: To explore experiences of delivering and receiving end-of- life homecare, from multiple perspectives including HCWs and managers, people receiving care, carers, and social and healthcare practitioners. Design: A qualitative multiple case study adopting a unique approach across three diverse sites using semi-structured interviews, and the option of Pictor- a visual diagram of relationships between those involved in care provision. Data were analysed using a reflexive thematic analysis. An adaptation of Bronfenbrenner's ecological theory was used to inform the analysis. Setting/participants: 133 participants were recruited from three economically and culturally different geographic areas within England. Results: Although examples of good practice were seen, common barriers to collaboration between other practitioners and homecare workers were also identified. These included: lack of healthcare practitioner training on homecare workers' role and its value/importance, lack of direct communication systems, gatekeeping of communication by managers, asynchronous working practices, one-sided communication, and restricted access to respective documentation and systems. Conclusion: The homecare worker role was often poorly understood, undervalued, and with inadequate communication and interaction between practitioners, potentially impacting on quality of care. Collaborative practice is necessary for continuity of provisions of high-quality care. but our findings indicate this was often absent due to knowledge, professional and organisational barriers. Further research should explore suggested strategies to address the barriers identified.

The Global Leadership Initiative on Malnutrition (GLIM) criteria have been recommended for the diagnosis of malnutrition. It requires that the patient meets at least one phenotypic criterion and at least one aetiological criterion. For the latter, the patient must either demonstrate reduced food intake or have evidence of systemic inflammation. As both are common in advanced cancer, the aim of the present study was to determine, in patients who met the GLIM phenotypical criteria, which GLIM aetiological criteria (reduced food intake or systemic inflammation) is most useful in predicting overall survival (OS). Data from two cancer biobanks were combined. Inclusion criteria were: ≥18 years, advanced cancer (stage III or IV) and ability to provide written consent. Weight loss (WL) was selected as the phenotypic criterion of choice, as preliminary analysis demonstrated it to be a superior predictor of OS compared to body mass index. Malnutrition type 1 was defined as >5 % WL over 6 months and a C reactive protein (CRP) ≥3 mg/l. Further analysis was performed with a CRP >10 mg/l cut-off. Malnutrition type 2 was defined as >5 % WL over 6 months and reduced food intake, as reported in the Patient Generated Subjective Global Assessment. Survival was assessed using Kaplan-Meier methodology, log-rank tests and Cox proportional hazards models, with hazard ratios (HR) and confidence intervals (CI) reported. In total, 176 patients were studied, with 147 events observed. The 3-month mortality rate was 32.4 % (CI: 25.1 to 39.0) and the 1-year mortality rate was 71.8 % (CI: 63.8 to 78.0). Malnutrition type 1 and malnutrition type 2 were observed in 37.8 % (HR: 2.27 [CI: 1.54 to 3.33], p < 0.001) and 26.3 % (HR: 1.74 [CI: 1.19 to 2.54], p = 0.005) of patients respectively, with both significantly increasing the risk of death. Following adjustment for relevant confounders both malnutrition type 1 (HR: 1.92 [CI: 1.25 to 2.94], p = 0.003) and malnutrition type 2 (HR: 1.61 [CI: 1.09 to 2.38], p = 0.019) remained significant predictors of OS. Median survival for patients with malnutrition type 1 was 2.14 (CI: 1.74 to 4.90) months compared to 9.5 (6.94-13.64) months for those without (p < 0.001). For malnutrition type 2, this was 2.37 (CI: 1.64 to 5.46) vs. 7.40 months (CI: 6.08 to 10.16), p = 0.004. When the CRP threshold was increased to >10 mg/l, malnutrition type 1 was observed in fewer patients (30.4%), median survival was shorter (1.91 [CI: 1.25 to 2.99] vs. 9.86 months [CI: 7.27 to 14.7], p < 0.001) and in both univariable (HR: 2.91 [CI: 1.94 to 4.63], p < 0.001) and multivariable (HR: 2.32 [CI: 1.50 to 3.60], p < 0.001) analyses, the risk of death increased. The results suggest that the inflammatory component of GLIM appears superior compared to reduced intake in predicting OS and notably, a higher CRP threshold correlates with shorter OS. Therefore, whilst GLIM has multiple potential combinations, all treated with equal regard, these data suggest that the inflammatory aetiological component should be hierarchical to others.