The evolution of a charity support services team

Our charity's mission is dedicated to beating blood cancer by funding research and supporting those affected. Since 1960, we have invested over 500 million in blood cancer research, transforming treatments and saving lives. Since 2015 there has been a Support Services team within the charity. This service was established to provide information that the blood cancer community can trust, in a language they can understand. By connecting and listening to our community they deepen our understanding and help shape our work. Research suggests that blood cancer patients are more likely than any other patients to leave their diagnosis appointment feeling they do not fully understand their condition. Our service can often consolidate the information given by clinicians. Patients also need advice and support on how to adapt to day-to- day life after their diagnosis. There are challenges that are unique to blood cancer, such as living with cancer as a chronic condition, being on 'watch and wait' or fluctuating remissions and relapses. In 2023 the Support Services team have a 7 day presence on our phone line, email and social media platform where people can communicate with one of our trained blood cancer support officers, or one of three Registered Nurses, all who can provide information about blood cancer diagnosis and help with emotional and practical support. We also run an online community forum where people affected by blood cancer can connect, share experiences and provide peer support. The highly experienced haematology nurses provide a clinical aspect to the support of the Blood Cancer Community that enhances the established patient centred support given historically by the charity. The nurses advanced knowledge and experience of haematological cancers, treatments, side effects, holistic care and NHS process can further guide the community. This is in addition to the invaluable information from their treatment teams. In 2023 the Support Services team are now reaching thousands of the blood cancer community. We understand that in the past 3 years the COVID-19 pandemic and the work of our charity around this will have influenced the significant increase in contacts but equally the robust and trusted services provided through this charity has contributed too.

A breath of fresh air

Submission content Introduction: This is a story about the day I wheeled a patient outside. I know, it sounds somewhat underwhelming. But little did I know that this short trip down a hospital corridor and beyond the entrance foyer would mark a profound shift in perspective both for me and my patient, which I hope will influence me for the rest of my career. Main Body: "Paul" was in his 50s and severely afflicted by COVID-19, resulting in a protracted ICU admission with a slow and arduous ventilator wean. Throughout his time on the unit, Paul had seen no daylight;no view of the outside world. He was struggling to make progress and was becoming exasperated. His deteriorating mood in turn affected his sleep, which further undermined his progress. Due to COVID-19, visiting was not permitted and Paul's cuffed tracheostomy meant that he couldn't speak to his family. One day, witnessing Paul's psychological decline, I asked him if he fancied a trip outside. Despite initial reluctance, he eventually gave in to some gentle persuasion from the staff nurse, with whom he had developed a close bond. So there we went;Paul, his nurse and me. And as we wheeled his bed through the door into open air, Paul's whole demeanour suddenly changed. He appeared as though the weight of the world had been lifted from his shoulders and his face lit up with awe, a tear emerging in the corner of his eye. In that moment he rediscovered life. Not as a hospital patient, but as a person. Watching the world go by, he remembered what it was like to be a member of the human race, not the subject of endless tests and treatments. He tasted freedom. Conclusion(s): Awakened by his experience of the forgotten outside world, when we eventually returned to the ICU Paul was an entirely different man. To Paul, the trip outside symbolised progress. After weeks of frustration and despair, he finally had a purpose;a motivation to get better. Meanwhile, I was having my own quiet realisation. I now understood what it truly meant to deliver holistic care. It can become all too easy to focus on the clinical aspects;to obsess about the numbers. But in fact, often what matter most to patients are the 'little things', to which no amount of medication is the solution. I now try to consider during my daily review: what matters to this patient? How are they feeling? What are they thinking? What else can I do to help their psychological recovery? And as for me personally? Having witnessed Paul's reaction to the outside world, I suddenly became aware of how little attention I normally pay to the world around me. How little I appreciate the simple ability to walk outside, and the fundamental things we take for granted. Now, when I'm feeling annoyed or frustrated about something trivial, I stop and think of Paul. I then thank my lucky stars for what I have to be grateful for. Ultrasound Ninja.

COVID-19: Adapting to change, general surgery at a district general hospital in the United Kingdom

The Coronavirus pandemic has caused major change across the world and in the National Health Service. In order to cope and help limit contagion, numerous institutions recognised the need to adjust clinical practice quickly yet safely. In this paper, we aim to describe the changes implemented in a general surgery department at a district general hospital in the United Kingdom. Across the surgical specialties, frameworks, protocols and guidelines have been established locally and nationally. The aerosol generating procedures involved in general surgery required us to alter our daily activities. Modifications to patient management were necessary to try and reduce viral spread. Staff wellbeing was heavily promoted in order to help maintain the frontline workforce. A holistic approach was required.

Scientific rationale of Indian AYUSH Ministry advisory for COVID-19 prevention, prophylaxis, and immunomodulation

The current outbreak of COVID-19 is caused by the SARS-CoV-2 virus that has affected > 210 countries. Various steps are taken by different countries to tackle the current war-like health situation. In India, the Ministry of AYUSH released a self-care advisory for immunomodulation measures during the COVID-19 and this review article discusses the detailed scientific rationale associated with this advisory. Authors have spotted and presented in-depth insight of advisory in terms of immunomodulatory, antiviral, antibacterial, co-morbidity associated actions, and their probable mechanism of action. Immunomodulatory actions of advised herbs with no significant adverse drug reaction/toxicity strongly support the extension of advisory for COVID-19 prevention, prophylaxis, mitigations, and rehabilitation capacities. This advisory also emphasized Dhyana (meditation) and Yogasanas as a holistic approach in enhancing immunity, mental health, and quality of life. The present review may open-up new meadows for research and can provide better conceptual leads for future researches in immunomodulation, antiviral-development, psychoneuroimmunology, especially for COVID-19.Copyright © 2021, Institute of Korean Medicine, Kyung Hee University.

Towards gold standard care for peripartum women admitted to general intensive care units

Introduction: Critically-ill obstetric patients admitted to general intensive care units (ICU) are a rare and unique population for whom excellent care is essential to prevent devastating physical and psychological morbidity. Admissions are often unanticipated and can present challenges to obstetric and intensive care MDTs. 2018 Enhanced Maternal Care (EMC) Guidelines provide standards for caring for these women, and the 2022 Ockenden review exposed the association of peripartum ICU admission with undertreated psychological trauma and a desire for individualised debriefing [1,2]. We audited the care of obstetric admissions to general ICUs in our quaternary centre. We sought evidence of psychological morbidity to improve follow-up pathways in line with 2022 Ockenden actions. Method(s): Retrospective online case note review of maternity admissions to general ICUs between 1/1/2021-1/1/2022 compared to EMC audit standards. Exclusion criteria: <22/40 gestation, >6/52 postpartum and admissions to our level 2 labour ward high dependency unit. Result(s): 25 patients were admitted to general ICUs over 12 months. Median age was 35-39 years, mean parity was 1. The commonest indication was obstetric haemorrhage (n = 10). 15 of 25 patients required level 3 care, median length of stay was 1.5 days. Documentation of daily obstetric MDT ward round was variable, as was mother-baby contact. 0 of 25 women were seen in obstetric anaesthesia clinic after discharge, only 1 received outpatient ICU follow-up. 50% of postnatal admissions (n = 14) had documentation of significant psychological distress. In response a local checklist was developed with key colleagues to support collaborative working and standardise quality care. It includes automatic referral into obstetric anaesthesia clinic and access to a novel perinatal mental health service. Discussion(s): A peripartum admission to ICU is highly likely to be experienced as traumatic [2]. The incidence of obstetric ICU admissions may increase in the context of greater clinical complexity of the UK pregnant population and COVID-19, whilst the non-anaesthetic ICU workforce may have little obstetric training. Obstetric anaesthetists are therefore uniquely skilled to facilitate quality resuscitation and referral to ICU, but gold-standard holistic care extends beyond admission. We believe regular audit and dedicated local care pathways which incorporate proactive debriefing and psychological health can improve the care of this important group of women.Copyright © 2023 Elsevier Ltd

The Health Hexagon Model: Postulating a holistic lifestyle approach to mental health for times and places of uncertainty

Professional-driven mental health services are often predicated on westernized beliefs of mental health and distress. This presumptuous view results in treatment solutions that are not suitable to (many) non-western contexts because they are neither culturally valid nor practically sufficient. Instead of promoting imported ideas of mental health, we encourage communities, including Hong Kong, from and for where the authors primarily theorize the current thesis, to turn to and strengthen the resources they employed before the medicalization of distress and suffering. Basic foundational elements in one's everyday life, which we present here as the Health Hexagon Model, should be promoted, especially healthy sleep, healthy diet, regular physical activity, closeness with nature, supportive kinships and friendships, and a sense of purpose, meaning, or sacredness. These elements are not novel;the importance of these basic elements has been recognized, distilled, and transmitted generation after generation. We advocate for communities to identify the missing or hampered fundamental elements in their lives and focus on finding methods that would help them adopt a lifestyle conducive to individual and collective health. This call-to-action is particularly timely as the global community fights for its survival against the coronavirus and ponders ways to cope with the seismic changes in lifestyle it has brought.Copyright © 2022 The Authors

COVID-19 Vaccine Hesitancy in Israel Immediately Before the Vaccine Operation

The development of a vaccine for COVID-19 presented hope for a way out of the global crisis caused by the virus. However, a potential barrier may be vaccine hesitancy, and identifying the factors that affect it is critical, especially concerning a new vaccine technology. The purpose of this research is to identify the factors that effects vaccine hesitancy by using a holistic view. The data were collected from 504 people in December 2020, 3 days before the vaccine operation started in Israel. The analysis included three categories of determinants: (1) contextual influences;(2) health records;and (3) perceived health attitudes. The results indicate that different sets of variables affect willingness to accept the vaccine among the whole spectrum of the vaccine-hesitant and the undecided subsample. In the full sample, gender, age, income, influenza vaccine, perceived trust, perceived susceptibility, perceived benefits, and perceived barriers affected vaccine acceptance. The perceived level of suffering from COVID-19 was associated with willingness to vaccinate, and when religious beliefs increased, the intention to vaccinate decreased. For the undecided subsample, the factors included gender, influenza vaccine, trust in the vaccine company, and perceived vaccine benefits and barriers. The results suggest that efforts of governments and health institutions should focus on women and highlight the vaccine as an opportunity to "go back to normal" without worries. Those results will help implement vaccine strategy in the following cases: if infant vaccination is pursued and if emergency vaccines or new vaccine technologies emerge for another pandemic as well. Copyright © 2021.

Patients' Experiences With Therapeutic Approaches for Post-COVID Syndrome: Results of a Crowdsourced Research Survey.

Some patients develop multiple protracted sequelae after infection with SARS-CoV-2, collectively known as post-COVID syndrome or long COVID. To date, there is no evidence showing benefit of specific therapies for this condition, and patients likely resort to self-initiated therapies. We aimed to obtain information about therapies used by and needs of this population via inductive crowdsourcing research. Patients completed an online questionnaire about their symptoms and experiences with therapeutic approaches. Responses of 499 participants suggested few approaches (eg, mind-body medicine, respiratory therapy) had positive effects and showed a great need for patient-centered communication (eg, more recognition of this syndrome). Our findings can help design clinical studies and underscore the importance of the holistic approach to care provided by family medicine.

Palliation in a pandemic: the human cost of achieving the greater good.

The onset of the COVID-19 pandemic in early 2020 created major challenges for specialist palliative care services. Significant ethical challenges have arisen in practising a holistic approach to patient and family care, while observing local and national health care policy in the face of a global pandemic. This report highlights the challenges that arose for a patient, family members and staff consequent on COVID-related visiting restrictions. An integrated specialist palliative care inpatient unit and elderly care facility in Ireland. A 50-year-old married mother of three teenagers and one 12-year-old child with advanced amyotrophic lateral sclerosis is described. The patient could not speak or move her limbs. She communicated using an eye gaze device. She had previously declined enteral feeding, and noninvasive ventilatory support was not tolerated. Her husband was particularly attentive and remarkably intuitive in identifying her unspoken needs. At the start of the pandemic, visiting was severely curtailed in line with national policies. The change in visiting policies caused enormous distress to the patient, her family and to the staff members. IT devices were of limited benefit. The current pandemic has had a significant impact on families and health care professionals in which balancing individual need and traditional freedoms against the wider societal need are necessary in limiting the spread of COVID-19.

The role of culturally competent robots in major health disasters

Prompted by the 2020 COVID-19 pandemic, this chapter draws evidence from research studies regarding the huge changes in the practices and methods for providing nursing, medical, and spiritual care in massively prohibitive working environments. Examples of AI and robotic devices used during the pandemic will be covered in the spirit of constructive reflection and contemplation. The reported unpreparedness for an effective, efficient, and humane response to such major health disasters and hazards will be discussed, and suggestions for the future will be given. The training needs reported by health and social care workers will be analyzed in the light of the technological challenges they are required to cope with. © 2022 Elsevier Inc. All rights reserved.

10 years of raising awareness of disease-related malnutrition

The article mentions the anniversary of the Managing Adult Malnutrition in the Community program to address malnutrition in the United Kingdom (UK) that was launched 10 years ago as of September 2022.

MULTIDISCIPLINARY TEAM OPINION ON HOSPICE CARE DURING THE PANDEMIC

Background Changes made by palliative care services in response to the pandemic have been reported by service leaders, describing organisation-level decisions and solutions (Bradshaw, Dunleavy, Walshe, et al., 2021;Dunleavy, Preston, Bajwah, et al., 2021;Oluyase, Hocaoglu, Cripps, et al., [preprint], 2020). The impact of the pandemic on direct care provision as experienced by multidisciplinary team members has not been explored. Aims To understand hospice multidisciplinary staff 's views on care provision during COVID-19 and the effect of providing care on staff wellbeing, burnout levels and spiritual health and the consequent influence on workforce sustainability. Methods A survey of clinical staff in an independent hospice providing adult and paediatric inpatients and lymphoedema, bereavement and day services during the pandemic including validated wellbeing, burnout, and spirituality questions. Qualitative data from the survey was analysed using the Human Learning Systems Framework (Lowe & Plimmer, 2019). Results 29% of staff completed the survey. Staff 's responses demonstrated that the pandemic had a significant negative effect on their wellbeing with high levels of all domains of burnout whilst spiritual health was less affected. Qualitative analysis revealed human themes including the impact of isolation and visiting restrictions on patients and family whilst staff described their ability to maintain a sense of positivity and purpose despite anxiety and frustration. Learning themes focussed on adapting and learning through adversity. System themes described the barriers to providing holistic care and how these were overcome and the importance of accessible communication and ensuring appropriate assessment including the provision of remote, domiciliary, and ambulatory care. Conclusions Hospice staff 's psychological wellbeing and expertise in providing holistic care has been tested to the limit during the pandemic, however, they have responded with positivity, producing innovative solutions. Hospice staff 's opinions and support for their wellbeing must be incorporated into current and new care models to ensure they can continue to be empathic carers, patient and family advocates and inspirational innovators (Marie Curie, 2021).

Exercise and breathing in rehabilitating long COVID

Many people with long COVID are still struggling with symptoms. Aysha Mendes looks at the research into rehabilitation

EXPANSION OF SEXUAL HEALTH OUTREACH DURING COVID

Introduction Our service expanded its outreach delivery in 2021 during the COVID pandemic. We commenced home visits, and in collaboration with other organisations delivered care in a mobile clinic and alternative non-clinical venues. Methods Retrospective electronic patient records review of patients seen in an outreach setting between March 2021 - March 2022. Results 134 patients were referred to outreach and 106 were seen. The most frequently encountered characteristics, or vulnerabilities, of patients referred to outreach are highlighted in the table. 53% of patients were of White British ethnicity;76% female. STI screening was offered to 104 patients and 43 had positive infections. Vaccinations were offered to 56 patients. Contraception was discussed with 59 patients and LARC initiated in 19. Discussion Implementing new modes of delivery of sexual health care has been possible during the pandemic, meeting the needs of vulnerable populations. There was a high rate of infection positivity and LARC uptake. By working with local organisations we provide holistic care by addressing multiple issues, such as mental health assessment and substance misuse support, in one visit. (Table Presented).

Frailty: an overview of concepts, risk factors, assessment tools and interventions.

Frailty is a distinctive health state and a life-limiting syndrome seen in older people and in those living with multiple long-term conditions. It is likely that every nurse will encounter patients living with frailty in their clinical practice, even more so if they work in older people's nursing. People living with frailty are more vulnerable than others to stressors and insults due to a decline in their physiological reserve and function. There are tools that can be used to assess people's frailty or risk of frailty and interventions that can be used to prevent or reduce frailty. This article describes frailty and explains how to assess, prevent and reduce it. The article also outlines the relationship between frailty and coronavirus disease 2019 and the frailty trajectory at the end of life.

Assessing Post-Acute Sequelae of COVID- 19 (PASC) in a Pilot Cohort of Patients Participating in Integrative Medical Group Visits

Methods: The first adapted IMGV was delivered as weekly twohour telehealth visits cofacilitated by a physician and yoga instructor over the course of 8 weeks (June to August 2021). Interviews were conducted with 16 patients, aged 22 to 67, prior to participation in the groups about their symptoms and experience with PASC. The perceived stress scale (PSS) was used to measure stress levels as well. Descriptive statistics were performed on quantitative data and qualitative data were analyzed using thematic content analysis. Results: The mean PSS score was 19.00 with a standard deviation of 5.52, which corresponds to moderate stress levels. Primary symptoms reported by patients include fatigue, shortness of breath, and brain fog. Patients reported factors that exacerbate symptoms include physical activity and stress related to work and everyday activities. Factors that improve symptoms included antiinflammatory diets and self-care activities. Feelings of frustration and anxietywere common as patients cannot quickly recover and there are no rapid treatments. Adaptations to this cohort of IMGV included discussions about COVID-related news and research, COVID vaccinations, PASC-related conditions, neuroplasticity, meditation practices, and nature-based resources that parallel resilience and growth. Background: With the rising number of patients experiencing the onset of Post-Acute Sequelae of COVID-19 (PASC), there is a need to find effective treatment options. The Integrative Medicine Group Visit (IMGV) is an evidencebased programusing complementary and traditional modalities in a group setting to treat patients with various conditions. The objective of this study is to assess the symptoms of patients diagnosed with PASC to adapt an existing IMGV model. Conclusion: By understanding the symptoms patients encounter with PASC, clinicians will be able to provide holistic care to meet the needs of each patient. The analysis from this pilot cohort will give clarity on a condition that currently has been hard to manage and treat.

WORKING IN PARTNERSHIP WITH THE THIRD SECTOR TO PROVIDE SUPPORT FOR PAEDIATRIC, ADOLESCENT PATIENTS AND FAMILIES THROUGHOUT COVID-19 AND BEYOND

Background/Aims A youth work approach to the delivery of additional support for young people and families has been used for the past 2 years within the paediatric rheumatology service in Glasgow. The approach takes into consideration that young people choose to participate, it's personcentred and built from where the young people are, young people and staff are all part of the journey and learning process. During the COVID-19 pandemic the support for young people went virtual, linking young people with peer support and online support. Dedicated service and delivery model in partnership with pediatric clinical services, ensure specific support needs are met. The approach to working with young people is bespoke and delivered by teams that understand the needs of young people. Methods The youth work approach recognises that young people choose to participate, it's person-centred and bespoke to the specific needs of young people. Young people and specialist staff are equal parts of the journey. Listening to unmet needs of young people as well as sector best practice - from intense 121 support for families to digital tools to meet growing expectations post-COVID-19. Support in clinic is youth and family led: with unique peer model, youth empowerment, communities of support and co-production. With staff delivering 121 support, and peer volunteers delivering and leading group work out with clinical settings. Third sector staff are integrated with the paediatric rheumatology team, working together to support young people and families holistically. Results The youth work approach best fits with the unmet needs of the young people within clinical settings. Young people are supported to feel more confident, less isolated and more hopeful about the future. They are encouraged to build positive peer-to-peer relationships and feel they are taken seriously and supported through their journey alongside partners. The approach to delivery is based on well-grounded practical and experiential knowledge. This is proven to enhance the lives of young people and offers them effective tools to use throughout their development. Our approach is based on best practice youth work. Conclusion Early youth work intervention and integration is highly valued by young people and families, offers holistic, person-centred, and developmentally appropriate care with lifelong benefits. Integrated and localised delivery creates unique insight, offering bespoke support to young people within clinical settings and beyond. Quality relationships with youth workers and clinicians can lead to improvements in holistic care and support for young people. An effective way to reach young people at key points - diagnosis, treatment and transition to adult services. Integration ensures that there is an 'in house' expertise in youth work and joined-up services and support for young people and families.