Hospice UK

Many tools and interventions developed from research projects are not properly implemented in health and social care practice. Engaging with stakeholders is an important part of the implementation process when developing, sharing and embedding new tools. The Victoria & Stuart Project was a 2-year project that co-designed a toolkit of resources and approaches to support end-of-life care planning for people with intellectual disabilities. It had an inclusively delivered dissemination and engagement workstream to raise awareness of the toolkit throughout the project. In this paper, we describe and reflect on the project's public 'inspiring and informing' engagement activities. Engagement activities included a project website, weekly blog and newsletter. The project held webinars and was promoted on various social media platforms. One-to-one stakeholder consultations with all members of the project's Research Advisory Group were held. Presentations were given to both academic and non-academic audiences. Engagement activities were labour-intensive and time-consuming, particularly when creating regular content such as weekly blogs and social media posts. It became obvious that team members did not have expertise in marketing or communication skills and had to learn from experience. In addition, it was difficult to build and maintain a following with a changing social media landscape. There is evidence that the project is on its way to meet the project's engagement-related medium-term outcomes, such as being included in national palliative care reports and accreditation programmes as well as international guidelines. Public engagement is a complex, uncertain and non-linear undertaking, requiring continual reflection and refinement in response to changing circumstances within and beyond the research. We believe a key driver for successful engagement has been employing researchers with intellectual disabilities as well as working actively with core stakeholders throughout the project. Our engagement recommendations are: (1) Involve people with lived experience; (2) Plan and allocate time; (3) Include social media and/or marketing roles in research; (4) Tailor to the audience and platform; (5) Make it engaging and fun; (6) Learn how to make videos; (7) Keep presenting your work; and (8) Make time for stakeholder consultations. The research team included four researchers with intellectual disabilities (A.C., D.J., L.J. and R.K.-B.). Researchers with intellectual disabilities have been part of every step of the research process; from study design to data collection and analysis to dissemination of study findings, including engagement activities. Palliative care and intellectual disability service provider representatives (G.A., M.W., N.P., R.H. and S.S.) have been closely involved throughout the project. The research was supported by a Research Advisory Group comprising a variety of stakeholders, including people with intellectual disabilities, families, representatives from intellectual disability and palliative care organisations, and policymakers.

<h3>Introduction</h3> In palliative care, oxygen therapy can be used for the treatment of hypoxia and/or for symptomatic relief of breathlessness (O’Driscoll, 2017). We conducted a re-audit of hospice inpatient oxygen prescribing and monitoring following establishment of an electronic prescribing system. <h3>Methods</h3> Data was collected retrospectively for all hospice inpatients who received oxygen therapy between April and July 2025. We measured data against 23 standards identified from the British Thoracic Society 2017 guidelines and three hospice policies (Medical Gases Policy 2024; Oxygen Standard Operating Procedure 2025; Medicine Policy 2022). Standards were grouped into four categories, those relating to oxygen prescribing (n=10), oxygen monitoring (n=6), medical review (n=5) and risk assessment (n=2). Target rates for each standard were 100%. Results were compared with 2023 audit findings when paper prescribing and monitoring were in place. For each patient, mean concordance was calculated as a percentage score for the four categories of standards. <h3>Results</h3> 68 patients received oxygen therapy and were included in the audit. Of these, 59 had an oxygen prescription. Among the ten prescribing standards, only one achieved 100% completion, the requirement for prescriptions to be signed. This was assured by the switch to electronic prescribing. 51% of prescriptions (n=40) had an appropriate oxygen flowrate, device and target saturations recorded, compared with 59% in 2023 (n=44). Oxygen monitoring had worsened from the 2023 audit with infrequent documentation of oxygen flowrates (22% vs 51% in 2023), devices (19% vs 51%) and saturations (20% vs 24%). Mean concordance with standards were: 68% for prescribing practice; 25% for monitoring; 41% for medical review; and, 63% for risk assessment. <h3>Conclusion</h3> Establishment of an electronic prescribing system has not improved oxygen therapy prescribing or monitoring for hospice inpatients. Recommendations are to improve the prescribing template and monitoring proforma within the electronic prescribing software. <h3>References</h3> O’Driscoll BR, <i>et al</i>. British Thoracic Society guideline for oxygen use in adults in healthcare and emergency settings. <i>Thorax</i> 2017;<b>72</b>(Suppl 1):ii1–ii90. doi: 10.1136/thoraxjnl-2016-209729. Lomax P. (2024), Moya Cole Hospice: Medical Gas Policy, Version 3. Lacey D. (2025), Moya Cole Hospice SOP: Procedure for managing patients with Oxygen Therapy, Version 1. Pickard J. (2022), Moya Cole Hospice: Medicine Policy Version 2.1.

<h3>Background</h3> Palliative care represents an essential aspect of medical practice; however, existing evidence indicates that undergraduate medical training may insufficiently prepare graduates for the clinical, emotional, and interpersonal complexities inherent in this field. <h3>Aim</h3> This study seeks to examine Irish medical interns’ perceptions and experiences of their undergraduate education in palliative care, focusing on their sense of preparedness, perceived relevance, and suggestions for curricular enhancement. <h3>Methods</h3> A qualitative, interpretive design was employed. Semi-structured interviews were conducted with seven medical interns, recruited via purposive sampling. Data were analysed using Braun and Clarke’s reflexive thematic analysis framework. Strategies to ensure trustworthiness included member checking, reflective journaling, and peer debriefing. <h3>Results</h3> <h3>Four principal themes emerged</h3> (1) Variability and Gaps in Undergraduate Teaching, (2) Need for Practical, Prescribing-Focused Education, (3) Emotional Impact and Challenging Experiences, and (4) Recommendations for Curriculum Improvement. Participants described limited, inconsistent exposure to palliative care, often dominated by didactic teaching with minimal clinical application. Deficits in training related to opioid prescribing, symptom control, and communication with patients and families were widely reported. Many interns expressed feeling ill-equipped to manage the emotional and interpersonal aspects of palliative care practice. <h3>Conclusion</h3> The findings highlight a clear disconnect between current undergraduate palliative care education and the practical realities encountered by new doctors. Participants advocated for more experiential, clinically integrated learning and earlier, structured engagement with palliative care teams. These insights underscore the need for curricular reform to ensure graduates are adequately prepared—both clinically and emotionally—to deliver compassionate, high-quality palliative care.

<h3>Background</h3> Population growth and ageing is a worldwide challenge for health and social care services, including hospices. To support with planning and policy we conducted a retrospective, repeated cross-sectional study, the aim of which was to understand patterns and trends in people accessing inpatient hospice care and examine the relationship between cognitive impairment and patient outcomes. <h3>Methods</h3> Our population included all adults (≥18 years) admitted to Moya Cole Hospice, Greater Manchester, in the month of January for 9 consecutive years (2017 to 2025). We examined trends over time in patient demographics (age; sex; socio-economic status), clinical characteristics (primary diagnosis; comorbidities; evidence of cognitive impairment) and service use variables (length of stay; outcome of admission). Multivariable regression explored the relationship between cognitive impairment and length of stay. <h3>Results</h3> Our sample consisted of 412 patients (mean age 70 years (SD 14.0); 51.9% women). 85.2% of patients had a cancer diagnosis; the mean number of comorbidities was 2. The proportion of patients with cognitive impairment increased significantly over time from 0% in 2017 to 40% in 2025 (slope 3.15%/year, R2 0.49, p&lt;0.05). If this trend continued, by 2030 over half of all hospice inpatients would have evidence of cognitive impairment. Median length of stay was 14 days (range 1 to 232). Patients with cognitive impairment stayed on average 9.85 days longer than those without cognitive impairment (adjusted Beta (days) 9.85 (95% CI 4.72 - 14.98); IRR 1.54 (1.19-1.93; p&lt;0.001). <h3>Conclusion</h3> The proportion of hospice inpatients with cognitive impairment is increasing over time and is associated with significant increases in average length of stay. Hospices need to urgently consider how current models of care can be adapted to meet the needs of palliative care patients with increasing levels of delirium and/or dementia.

<h3>Background</h3> Access to palliative care is geographically variable.¹ The symptom most feared by patients is pain, and for a small number, analgesia alone offers inadequate control. However, pain management interventions such as regional nerve blocks, implantable pumps or neurosurgical procedures are difficult to access.² For patients in community or hospice, access to a specialist pain opinion is frequently reliant on ‘good will’ and local links forged between consultants, rather than established referral pathways. The West London Pain and Palliative Network MDT provide a streamlined, easy to access portal for rapid pain and palliative care opinion for patients with complex cancer pain. <h3>Methods</h3> This is a digital, asynchronous MDT. Cases for discussion are submitted via an online form by any clinician within the West London region supported by RM Partners. Details are uploaded onto an MS Teams Channel by the MDT coordinator. Members of the Network MDT, consisting of local palliative care and pain consultants, are informed and have 48 hours to comment and recommend an outcome. Consensus is then agreed and outcome communicated to the referrer. <h3>Results</h3> At the time of submission, 20 cases have been referred and discussed within the MDT. 12 of these were reviewed for a pain management procedure. Feedback from users demonstrates the form is quick to fill and access to pain procedures subjectively improved. <h3>Conclusion</h3> The MDT Network has been successful in providing an accessible platform to discuss patients with complex cancer pain between professionals. It has proven to be a time efficient solution and has improved access to pain procedures across the network region. The network also supports a series of education events, hoping to improve understanding amongst clinicians, increase appropriate referrals and help more patients. <h3>References</h3> Palliative and End of Life Care Commission (2025) Palliative and End of Life Care: Opportunities for England, Volume 1. https://img1.wsimg.com/blobby/go/e5bbd9ef-01fd-45c0-b4f4-1cf6b62157b9/VOLUME%201%20REPORT%20FINAL%20170625.pdf Faculty of Pain Medicine (2025) Gap Analysis of UK Pain Services 2025. FPM Gap Analysis report 2025. https://fpm.ac.uk/sites/fpm/files/documents/2025-05/FPM%20Gap%20Analysis%20report%202025.pdf

<h3>Introduction</h3> Respiratory and oropharyngeal secretions present significant challenges in motor neurone disease (MND). Symptoms such as choking and impaired cough compromise quality of life, place burdens on unpaid carers, and limit the effectiveness of interventions including non-invasive ventilation. Despite their prevalence, good symptom management is rare. <h3>Aims</h3> The session Aims to: Describe the complexity of secretion management in MND. Consider the Impact of cough, choking, and secretion difficulties on patients and carers. Present emerging evidence and co-produced interventions to improve practice. <h3>Methods</h3> Speakers will present perspectives informed by clinical research and co-production with people living with MND. Topics include healthcare professional challenges, development of assessment tools, co-designed clinical management plans for choking, and approaches to sialorrhea management in complex neurological disability. A person living with MND will provide a lived experience perspective. The 45-minute session will combine structured presentations with panel discussion and case studies. <h3>Results</h3> The session will highlight the multifactorial nature of secretion management, the need for individualised approaches to cough augmentation, and the importance of equipping clinicians with confidence to respond to choking episodes. Co-production with patients and carers will underpin practical guidance and assessment tools, ensuring interventions are clinically relevant and acceptable. Lessons from specialist neurological care will broaden understanding of transferable strategies for secretion management. <h3>Conclusion</h3> Effective management of cough and secretions in MND require integrated, patient-centred solutions. Collaborative approaches between clinicians, researchers, and people living with MND will generate interventions that address unmet needs in palliative care. <h3>Impact</h3> This work will strengthen professional knowledge and confidence, support equitable palliative care for non-cancer conditions, and demonstrate the value of co-production. It will provide a model for improving symptom management and quality of life in MND and related neurodegenerative diseases.

<h3>Background</h3> Hospice care in the UK remains deeply stigmatised, with many members of the public associating hospices solely with end-of-life suffering. This narrow perception restricts early engagement and contributes to isolation for patients and families. Concurrently, social prescribing has gained national traction as a means to address chronic illness, mental health challenges, and ageing-related decline through non-clinical interventions such as the arts (Fancourt, Finn, Baxter. Social prescribing: new approaches to wellness. UCL; 2023). Yet, these strategies remain underused in hospice environments, which are rarely positioned as long-term community assets. A 2023-24 pilot at a London hospice demonstrated the power of personalised, live music on engagement and well-being. Over 70 patients and 100 family members participated; 85% reported emotional uplift or memory recall, 70% noted reduced agitation, and over 20 families described strengthened bonds or legacy creation. A landmark three-hour outdoor concert recorded zero PRN inpatient medication use – the first in the hospice’s history – and achieved over 150,000+ social media views (91% from non-followers), demonstrating strong public interest in creative, accessible, hospice content. This work underscores the potential for arts-based interventions to reposition hospices as inclusive, life-affirming spaces that serve broader community functions. <h3>Aims</h3> Evaluate whether interactive music events at Prospect Hospice can improve public perceptions of hospices. Assess whether music can support participation in health research among underserved communities. Co-design and conduct a preliminary evaluation of a creative arts framework integrated into hospice care. <h3>Methods</h3> 12-month pilot featuring three live music events co-designed with patients, families, and community partners. Inclusive programming targeting multi-faith groups, schools, food bank users, and those experiencing homelessness. Collaboration with Bath and North East Somerset, Swindon and Wiltshire Together Research Hub and the National Institute for Health and Care Research to embed research awareness into events. <h3>Evaluation</h3> Mixed methods: surveys, ethnographic observation, participatory research, and community-led feedback loops. Evaluation of the first concert presented these qualitative evaluations from staff and families: ‘<i>It was powerful to witness one guest move from seeing hospices as unwelcoming to strongly agreeing they’re emotionally safe, inclusive spaces where creativity can thrive. That kind of shift is exactly what these events are about</i>.’ Director of Patient Services. ‘<i>I couldn’t believe it! I have never had music played especially for me before. This was so moving and created a lot of emotions for me that I had been holding in. I felt valued and appreciated like never before. At a time when I was desperately sad and worried, it gave me such a boost. I will never forget this.’</i> Partner of a patient dying on the inpatient unit. <h3>Conclusions</h3> Music can reshape hospices as accessible, inclusive health spaces. This pilot offers a replicable model for sector-wide engagement.

<h3>Background</h3> The Care Quality Commission’s (CQC) ‘fundamental standards’ set the minimum requirements that care providers must meet, as outlined in the Health and Social Care Act (CQC. The fundamental standards. [internet] 2024). These standards cover all aspects of care, from how individuals are treated to the quality of facilities and the responsibilities of staff. <h3>Aims</h3> To develop a bespoke set of care standards aligned with the CQC’s fundamental standards, through meaningful collaboration with patients and their families – capturing their voices and experiences to ensure the standards are relevant to those using our services and supportive for staff delivering compassionate, high-quality care (National Voices. Peer support: what is it and does it work? [internet] 2015; NHS England. Working in partnership with people and communities: statutory guidance. 2023). <h3>Method</h3> We conducted a structured review of the CQC’s fundamental standards and patient-centred approach to inform a set of meaningful, patient-centred care standards (National Institute for Health and Care Excellence. Patient experience in adult NHS services: improving the experience of care for people using adult NHS services. [CG138] NICE; 2021). Carefully designed questions were developed to enable conversations to explore what matters most to patients and families at the end of life. A consultation event was held with bereaved family members, while patients in the Inpatient Unit were also individually interviewed to ensure their voices were included. <h3>Results</h3> 24 patients and family members participated in the consultation. Insights from these discussions directly informed the development of the ‘Commitment to Care for You’ poster, which outlines the core care standards valued by those we support. To ensure the language was authentic and meaningful, further input was provided by a bereaved family member and volunteer, who supported the final version of the poster. The final ‘Commitment’ posters, featuring nine co-produced care standards, are now displayed throughout the hospice. They serve as a visible expression of our values and a practical guide to delivering respectful, compassionate, and person-centred care. <h3>Conclusion</h3> This co-produced approach has strengthened our commitment to patient-led care and embedded shared values into everyday practice. We will be auditing these in 2025 with patients and families to ensure they remain relevant and are being delivered (Care Quality Commission. Regulations for service providers and managers: Regulation 17: Good governance. 20 [internet]).

<h3>Background</h3> People living with dementia often face stigma, social isolation, and limited opportunities for creative expression. To address this, our hospice led the Dementia Unmuted Festival – placing lived experience at the centre of awareness, inclusion, and care innovation. <h3>Aims</h3> The festival aimed to challenge stigma, promote inclusion, and celebrate the creativity and contributions of those affected by dementia. It sought to empower individuals, influence perceptions, and model a compassionate, person-centred approach to dementia care. <h3>Methods</h3> Our hospice delivered a series of co-produced events, including ballroom dance sessions, an Open Mic afternoon, a community outreach art exhibition, and a commissioned theatre performance. People living with dementia were central to shaping each event, from creative workshops to the sharing of personal narratives. <h3>Results</h3> The festival engaged a wide audience, including healthcare professionals, carers, students, and the local community. Participants reported increased empathy, understanding, and connection. The theatre performance prompted critical discussion around ethical care practices, while the outreach art programme extended support to individuals in care homes. The festival’s creative outputs – especially artworks and first-person storytelling – are now being used to support training, awareness, and service development. <h3>Conclusion</h3> The Dementia Unmuted Festival showcased the transformative impact of creativity, co-production, and community engagement in dementia care. It affirmed our hospice’s commitment to fostering dignity, inclusion, and wellbeing – demonstrating that people living with dementia can lead, inspire, and shape better care. Our hospice is committed to making Dementia Unmuted a yearly event, embedding its values into the heart of our service and community outreach.