Developing a generic business case for an advanced chronic liver disease support service.

Introduction: Liver disease deaths are rising, but specialist palliative care services for hepatology are limited. Expansion across the NHS is required. Methods: We surveyed clinicians, patients and carers to design an 'ideal' service. Using standard NHS tariffs, we calculated the cost of this service. In hospitals where specialist palliative care was available for liver disease, patient-level costs and bed utilisation in last year of life (LYOL) were compared between those seen by specialist palliative care before death and those not. Results: The 'ideal' service was described. Costs were calculated as whole time equivalent for a minimal service, which could be scaled up. From a hospital with an existing service, patients seen by specialist palliative care had associated costs of £14 728 in LYOL, compared with £18 558 for those dying without. Savings more than balanced the costs of introducing the service. Average bed days per patient in LYOL were reduced (19.4 vs 25.7) also intensive care unit bed days (1.1 vs 1.8). Despite this, time from first admission in LYOL to death was similar in both groups (6 months for the specialist palliative care group vs 5 for those not referred). Conclusions: We have produced a template business case for an 'ideal' advanced liver disease support service, which self-funds and saves many bed days. The model can be easily adapted for local use in other trusts. We describe the methodology for calculating patient-level costs and the required service size. We present a financially compelling argument to expand a service to meet a growing need.

Adoption in England: past and present challenges.

Over the last century, changes in legislation, social constructs and the perceptions of what family life 'should' look like have significantly transformed the process of adoption in England. The role of adoption has shifted from providing orphaned children a stable new home to today's regulated process mainly supporting children who have suffered early physical or social adversity. This provides significant challenges to adopters, paediatricians, child psychiatrists and teachers who can only support adopted children by understanding their needs.

Empowering healthcare professionals with health promotion information for transgender adolescents.

While the majority of lesbian, gay, bisexual and transgender (LGBT) adolescents, much like their cis-gendered heterosexual peers, will be confident and healthy young individuals, there are well-known health disparities, particularly within the transgendered community, which may lead to inferior health outcomes. To improve these outcomes, we must empower professionals to feel confident in their interactions with transgender adolescents so they can recognise, discuss and address these disparities. For many healthcare professionals, this may be a novel experience, but following the announcement in 2022 that the Gender Identity Development Service (GIDS) will move towards a regional model, these discussions increasingly frequently be encountered in a general paediatric setting. In this article, we discuss some of the topics which may be relevant to transgender young people during a general paediatric consultation.

Palliative long-term abdominal drains for the management of refractory ascites due to cirrhosis: a consensus document.

Palliative care remains suboptimal in advanced cirrhosis, in part relating to a lack of evidence-based interventions. Ascites remains the most common cirrhosis complication resulting in hospitalisation. Many patients with refractory ascites are not candidates for liver transplantation or transjugular intrahepatic portosystemic shunt, and therefore, require recurrent palliative large volume paracentesis in hospital. We review the available evidence on use of palliative long-term abdominal drains in cirrhosis. Pending results of a national trial (REDUCe 2) and consistent with recently published national and American guidance, long-term abdominal drains cannot be regarded as standard of care in advanced cirrhosis. They should instead be considered only on a case-by-case basis, pending definitive evidence. This manuscript provides consensus to help standardise use of long-term abdominal drains in cirrhosis including patient selection and community management. Our ultimate aim remains to improve palliative care for this under researched and vulnerable cohort.

Palliation of head and neck cancer: a review of the unique difficulties.

Each year, there are 11 900 new diagnoses of head and neck cancers in the UK, with around 4000 deaths. Survival rates are higher for those diagnosed earlier, however, patients are often diagnosed later, with 20% palliative at the time of diagnosis. There is a scarcity of head and neck cancer palliative care literature available. This review article aims to discuss the unique challenges of head and neck cancer palliation. It specifically focusses on the challenges of pain management, airway obstruction, dysphagia, haemorrhage and the psychology of palliative head and neck cancer management. This article explores the advantages and disadvantages of many of the different treatment options available. It is hoped that this article will highlight the unique difficulties encountered by patients with head and neck cancer towards the end of their life and offer insights and suggestions to improve patients' quality of life in their final weeks and months.

Predicting 1-year mortality among patients with decompensated cirrhosis: results of a multicentre evaluation of the Bristol Prognostic Score.

OBJECTIVE: Chronic liver disease continues to be a significant cause of morbidity and mortality yet remains challenging to prognosticate. This has been one of the barriers to implementing palliative care, particularly at an early stage. The Bristol Prognostic Score (BPS) was developed to identify patients with life expectancy less than 12 months and to act as a trigger for referral to palliative care services. This study retrospectively evaluated the BPS in a cohort of patients admitted to three Scottish hospitals. METHOD: Routinely collated healthcare data were used to obtain demographics, BPS and analyse 1-year mortality for patients with decompensated liver disease admitted to three gastroenterology units over two 90-day periods. Statistical analysis was undertaken to assess performance of BPS in predicting mortality. RESULTS: 276 patients were included in the final analysis. Participants tended to be late middle-aged men, socioeconomically deprived and have alcohol-related liver disease. A similar proportion was BPS+ve (>3) in this study compared with the original Bristol cohort though had more hospital admissions, higher ongoing alcohol use and poorer performance status. BPS performed poorer in this non-Bristol group with sensitivity 54.9% (72.2% in original study), specificity 58% (83.8%) and positive predictive value (PPV) 43.4% (81.3%). CONCLUSION: BPS was unable to accurately predict mortality in this Scottish cohort. This highlights the ongoing challenge of prognostication in patients with chronic liver disease, furthering the call for more work in this field.

Consent for babies born following surrogate pregnancies.

Surrogate pregnancies are becoming more common, but the law governing who can give consent following surrogate births is complex. Parental responsibility (PR) may be held by a variety of individuals, depending on the specific circumstances.We conducted a survey of paediatric medical staff within Health Education South West to establish knowledge regarding consent for a baby before a parental or adoption order is obtained. Our results showed that 19% of the 47 respondents answered all scenarios correctly. 43% of respondents knew that the surrogate mother had PR in all scenarios; however, 13% incorrectly assumed that either intended parent always had PR. Knowledge of other individuals who could provide consent in the scenarios was variable.Our survey revealed poor understanding regarding medicolegal aspects of consent in these complex situations, emphasising the need for more specific published guidance for primary and secondary healthcare professionals encountering these babies in the early postnatal period.

COVID-19 and Hospital Palliative Care - A service evaluation exploring the symptoms and outcomes of 186 patients and the impact of the pandemic on specialist Hospital Palliative Care.

BACKGROUND: Patients hospitalised with COVID-19 have increased morbidity and mortality, which requires extensive involvement of specialist Hospital Palliative Care Teams. Evaluating the response to the surge in demand for effective symptom management can enhance provision of Palliative Care in this patient population. AIM: To characterise the symptom profile, symptom management requirements and outcomes of hospitalised COVID-19 positive patients referred for Palliative Care, and to contextualise Palliative Care demands from COVID-19 against a 'typical' caseload from 2019. DESIGN: Service evaluation based on a retrospective cohort review of patient records. SETTING/PARTICIPANTS: One large health board in Scotland. Demographic data, patient symptoms, drugs/doses for symptom control, and patient outcomes were captured for all COVID-19 positive patients referred to Hospital Palliative Care Teams between 30th March and 26th April 2020. RESULTS: Our COVID-19 cohort included 186 patients (46% of all referrals). Dyspnoea and agitation were the most prevalent symptoms (median 2 symptoms per patient). 75% of patients were prescribed continuous subcutaneous infusion for symptom control, which was effective in 78.6% of patients. Compared to a 'typical' caseload, the COVID-19 cohort were on caseload for less time (median 2 vs 5 days; p < 0.001) and had a higher death rate (80.6% vs 30.3%; p < 0.001). The COVID-19 cohort replaced 'typical' caseload; overall numbers of referrals were not increased. CONCLUSIONS: Hospitalised COVID-19 positive patients referred for Palliative Care may have a short prognosis, differ from 'typical' caseload, and predominantly suffer from dyspnoea and agitation. Such symptoms can be effectively controlled with standard doses of opioids and benzodiazepines.