Centre For Excellence Newsletter Autumn 2023 Edition

Our Annual Lecture Guest speaker Dr Ben Bowers from Cambridge University, will be discussing "Medications in the Home for Good End of Life Care" on 7th March 2024, 5.30-6.30pm at LOROS Hospice.

I once read a tongue in cheek article written by a university lecturer which described her ability to identify any participant’s speciality purely based on where they sat and how they responded in her lectures. She suggested that those working in Emergency Care would fidget, sit in the middle of the room and ‘dash off and do’ as soon as the lecture ended. Those in paediatrics would tend to doodle, their notes strewn with cartoon characters and patterns that any mindful colouring book publisher would be pleased to have. The palliative care professionals though, would be two rows from the front, listening attentively, raising their hands periodically with exploratory, thoughtful questions…

Palliative care is special. The people who work in palliative care are special. That is my biggest take-away after four years in post.

I came to LOROS after having worked in the NHS for a decade in various roles and having trained as a midwife. An odd decision, some suggested to move from a career surrounded by the many joys of new life to one that could be perceived as dark and sad and depressing – one that was focussed on the very natural final stage of human presence - death.

How wrong this perception is. The world of hospice is one of light. It focuses on quality of life, of making each moment count and of celebrating the joy in every day. An important reminder for us all.

I have worked with the most incredible team of educators, researchers, coordinators and support staff. Our shared vision has been to ensure that the process of death and dying is as compassionate, gentle and well-managed as possible, a vision that we continue to pursue through relentless communication and evidence-based training which is delivered to many groups including; medical students, student nurses, paramedics, doctors, nurses, counsellors, care home staff, families and carers – even schools. In four years, which of course span the covid-pandemic, we have played an important role in supporting our local health system, working with colleagues caring for those with palliative needs in how to recognise deterioration and providing them with the tools, skills and confidence that help ensure that people remain in a familiar setting (should this be their wish) rather than being taken into hospital.

Our launch last year as a recognised Centre for Excellence in Palliative and End of Life research has been a highlight and it has also been my privilege to work with and learn from world-leaders in this area. I will watch the evolution and impact of this research with interest in the coming years and have every confidence that it will continue to make a difference to the diverse communities that we serve.

Looking back, I also reflect on the challenges that have and continue to face charity leaders. Funding remains a key priority and with the emergence and growing maturity of Integrated Care Systems, it is my desperate wish that healthcare providers sitting outside of the NHS are recognised for the important role that they play in the provision of care, a function that reduces pressure on our stretched NHS services. I hope that charities are increasingly included in conversations around the design of pathways and that their funding is proportionately aligned to the level of service they deliver. I hope that they continue to be seen to be an equal partner in a complex landscape that needs the involvement and expertise of each and every one of its players.

I reflect on the qualities required by healthcare charity leaders; the ability to build inclusive practices and rewards for the whole workforce set against the very real challenges associated with the ‘business of charity’. Most importantly, this is a sector that requires leaders with genuine compassion, a willingness to be open and transparent and a vision that motivates and inspires.

And so, as a converted professional sitting in the second row, listening attentively and making detailed notes, I say thank you to those many, many people involved in making one of the most challenging points in life slightly easier. The researchers who give us why, the educators that give us the what, the clinicians that give us such important care no matter when and where patients are, and the funders that provide the how.

Palliative care is special. May we each remember to make each moment count and to celebrate the joy in every day.

26th September brought the 2023 CRN East Midlands Research and Audit Event, which was hosted by LOROS and chaired by Dr David Miodrag (Palliative Medicine Consultant, John Eastwood Hospice) and Prof. Christina Faull (Palliative Medicine Consultant and Research Lead, LOROS Hospice). The theme was ‘Closing The Gaps’, and it was well attended by clinicians, researchers, and laypeople across the region. The event highlighted the breadth of palliative care research happening across the area and included presentations by:

Dr Eleanor Wilson (Anne McLaren Research Fellow, NCARE, Nottingham University) reported the findings and themes from some of her qualitative research into NIV at the end of life in MND, focussing on how NIV can cause shifts in the dying process, and the profound effects this can have on loved ones; Dr Nicole Bramhall (Palliative Medicine Trainee) spoke about her positive experience of the Associate Principal Investigator scheme and its benefits. She also gave a summary of how the CHELSea II (Clinically Assisted Hydration in the Last Days of Life) study is progressing at LOROS, and the surmountable challenges that the study brought; Dr Fran Allen (Research Fellow, NIHR School for primary care research, Nottingham University) presented her work on a consensus study into adapting, for use in Hospices, the ‘Action Falls’ prevention programme, which is already used very successfully in care homes to reduce the frequency of falls; Laura Havers (Clinical Nurse Specialist in Palliative Care, Nottingham University NHS Trust) reported on the findings of her retrospective survey into outcomes for patients who were started on high flow oxygen in an acute hospital. The need for high flow oxygen heralded a very short prognosis in a significant proportion of patients; Dr Seyi Olayemi (GP trainee) delivered the findings of an audit into the issuance of steroid cards for patients discharged from a hospice patient unit. He reminded us of the importance of educating patients about steroid ‘Sick Day Rules’, and highlighted the harm that can happen when steroids are stopped abruptly; Dr Chris Williams (LOROS Clinical Lecturer in community palliative care and frailty, University of Leicester) gave an overview of his work on the development and evaluation of a new clinical pathway to support frail care home residents who become acutely unwell. The project has helped deteriorating patients to remain in their care home and avoid unhelpful or unwanted admissions to hospital; Dr Becky Ogundele (Palliative Medicine Trainee) presented her findings from an audit into how well delirium is recognised in patients admitted to three hospice inpatient units. She explained why early recognition of delirium is important and made a strong case that the 4AT assessment tool should be used to screen for delirium in all hospice admissions.

The event was closed by Prof Christina Faull with an update on how hospices in the East Midlands are faring when it comes to recruiting to palliative portfolio studies. According to the data, four hospices recruited to portfolio studies in 2022-2023, though this does not include PIC activity or recruitment or non-portfolio studies. This represents approx. 25% of hospices in the East Midlands, which is reflective of the national average.

‘Thinking Ahead’ was a 35 month study funded by the National Institute of Health Research. Here we explored the experiences and decisions of ethnically diverse patients and families, that concerned their future planning for deterioration and dying. From this we developed three key resources for Health Care Professionals and Educators.

This included eight fictionalised stories, which were hosted on the e-Learning for Healthcare platform (e-LFH). This is a great resource for healthcare professional looking to improve their skills in discussing advance care planning, especially with patients from ethnically diverse backgrounds. Dr Lucy Bleazard a junior doctor working across the East Midlands who was involved in reviewing the content and having completed the course, tells us:

"I personally found the content to be extremely useful, as the modules use constructed case studies, based on real life stories from participants in the study, both from patients and their loved ones. The e-learning encourages the learner to not only think about what is seen (dress, food, language), but also explore what is less visible (family dynamics, values, expression of emotion) using authentic curiosity. The case studies make the resource so much easier to engage with and relate to your own day-to-day practice. I’d encourage any healthcare professional to access the e-learning on e-LFH to start improving their confidence in this area."

This has also had a significant impact on training staff at LOROS:

"As a result of the Thinking Ahead study we’ve incorporated the results into training for all clinical staff at LOROS. The research shows us that all people, regardless of their ability, background, lifestyle or culture, desire personalised, compassionate and holistic end-of-life care. The greater awareness of the beliefs and values of others, will continue to shape our care, and improve our patient / family experience."　 Kerry Blankley, Education Lead

You can access the e-learning resource along with the eight fictionalised stories and a self-directed learning guide here.

The Thinking Ahead study Research team have been disseminating the findings of this work locally, nationally, and now internationally, including Dr Zoebia Islam presenting at the 18th World Congress of the European Association for Palliative Care held in Rotterdam this year. The report for the "Thinking ahead about medical treatments in advanced illness: a qualitative study of barriers and enablers in end-of-life care planning with patients and families from ethnically diverse backgrounds" has now been published in the HSDR journal on the NIHR Journals Library website.

In our Education piece we often give our views on how our courses are going. For our recent 'Personalised End of Life Care is Everybody’s Business' programme, a group of dedicated nurses, including Anupama, Gemma, Liz, and Sherine, all experienced nursing professionals, attended the 3.5 day course to deepen their understanding of palliative and end-of-life care and they share their views with us.

The course focuses on understanding the principles of palliative care while emphasising the importance of recognising dying, communicating with patients and those important to them and providing personalised end of life care.

Anupama, a staff nurse from Glenfield Hospital, shared her perspective on the course. She said: "This course has provided me with invaluable insights into effective communication with patients at end of life." Her words highlight the significance of communication in the course's curriculum.

Gemma, a community nurse, expressed her enthusiasm for the course's practicality: "The course so far has just been brilliant; it's really informative and so relatable to my daily practice." She also mentioned: "My favourite part of the course was the session on advance care planning and ReSPECT forms, which is something I really thought I knew until I came onto this course and realised there's so much more to it that I hadn't paid attention to or understood before." Gemma's experience underscores the course's ability to deepen nurses' knowledge.

Liz, a nurse specialising in complex care, found immediate benefits: "So far, the course has lived up to my expectations; it's very varied and it sort of covers everything that needs to be looked at when dealing with complex patients, such as conversations, symptom management, care planning." She further noted: "Immediately, upon reviewing my experience on the course, I can definitely say that the skills that I already had have been streamlined.

Sherine, who works in the Respiratory Support Unit, Glenfield Hospital, discussed her transformation in dealing with challenging conversations: "This course has definitely given me the skills to build trust with a patient and break the bad news effectively, really working on our communication skills." She also mentioned a collaborative project with Anupama, stating: "For my project, Anupama and I... have decided to create a board on the ward available to staff with highlights of the course that we feel will be beneficial to all staff members." Sherine's journey highlights the lasting impact of the course and the sharing of knowledge among colleagues.

It is part of our mission at the LOROS Centre for Excellence to equip health care workers with practical skills and knowledge, that will enhance their ability to provide high quality, compassionate care for patients receiving a palliative care approach and those nearing end of life.

Keep up to date with the latest research and education news by following us on X (formerly known as Twitter) @LOROSEducation.