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This conference brings together hospice leaders, clinicians, and governance professionals to focus on improving patient safety in hospice care. It will explore best practice in creating and sustaining safe, high-quality services, alongside emerging developments shaping the sector, including the implementation of the Patient Safety Incident Response Framework (PSIRF) and the implications of the Assisted Dying Bill for hospice practice and governance. For more information: https://www.healthcareconferencesuk.co.uk/virtual-online-courses/patient-safety-hospices or email [email protected] Follow this conference on X @HCUK_Clare #PSHospices hub members receive 20% discount. Email [email protected] for discount code.

We are proud to announce and delighted to celebrate that five organisations have been awarded a Greener Palliative Care Award (GPCA). The GPCA recognises excellence in environmental sustainability across palliative and end-of-life care services in both NHS and charitable organisations (such as hospices). It celebrates organisations that are reducing their environmental impact, while maintaining the highest standards of compassionate care for patients and families. The Palliative Care Sustainability Network ran a pilot scheme where teams worked through the GPCA framework towards either Bronze, Silver or Gold award. Applicants were supported to work towards achievable standards, set out for each level, and were supported with resources and examples linking the teams with national work by bodies such as Greener NHS and the Centre for Sustainable Healthcare. Teams worked on key organisational changes, such as developing and delivering on Green Plans, together with actions that all staff (and volunteers) could work on. From cutting carbon emissions and reducing waste, to adopting sustainable procurement practices and promoting greener travel, the awardees demonstrated that quality care and environmental responsibility go hand in hand. If you are interested in reducing your own team’s environmental impact, want to meet the Care Quality Commission's (CQC) standard on environmental sustainability, or you just want to improve team working and job satisfaction in your workforce, why not get started on the Bronze GPCA? Open to all palliative care organisations free of charge, the Bronze award focuses on getting together, education, raising awareness and identifying the first areas to tackle in improving environmental sustainability. Sign up to our Palliative Care Sustainability Network page or email [email protected] and join the growing movement of climate conscious healthcare workers! More information can be found here: https://apmonline.org/greener-palliative-care-award/ The Award team have been working with the support of the following organisations: The Centre for Sustainable Healthcare, Hospice UK, Sue Ryder, UK Health Alliance on Climate Change and the Association of Palliative Care Medicine.

This conference focuses on improving safety for hospice patients. The conference will highlight best practice in improving safety in hospices, highlight new developments such as the implications of the new Patient Safety Incident Response Framework (PSIRF), and the new CQC Inspection Framework, and will focus on key clinical safety areas such as falls prevention, medication safety, reduction and management of pressure ulcers, nutrition and hydration, improving the response and investigation of incidents, preparing for onsite inspections and developing a compassionate culture in hospices. For further information and to book your place visit https://www.healthcareconferencesuk.co.uk/virtual-online-courses/patient-safety-hospices or email [email protected] hub members receive a 20% discount. Email [email protected] for discount code. Follow on Twitter @HCUK_Clare #PSHospices

In 2014 Seth Goodburn died from pancreatic cancer, 33 short and heart-breaking days after diagnosis. Seth wanted to die at home, however the weight of systems and processes meant that he sadly died in an acute hospital. After Seth died, his wife Lesley shared their story via a play, a film and an educational resource called Seth's Story. Sharing the story aims to: improve end of life care highlight the need for psychosocial support raise awareness of pancreatic cancer signs and symptoms. 10 years later, join this free conference to hear the impact of sharing Seth's Story, the improvements that have been made and future plans to help others share their experiences through creative artforms. Seth's Legacy Conference will take place at Keele University, where there will be an amazing line of presenters and performers covering pancreatic cancer, compassion and creativity in the impressive chapel on the campus. Sign up for the conference

In 2014 Seth Goodburn died from pancreatic cancer 33 short and heart breaking days after diagnosis. Seth's wanted to die at home however, the weight of systems and processes meant that he sadly died in an acute hospital. After Seth died his wife Lesley shared their story via a play, a film and an educational resource called Seth's Story Sharing the story has three aims to: improve and of life care. highlight the need for psychosocial support. raise awareness of pancreatic cancer signs and symptoms. Ten years later, join us at this free conference to hear the impact of sharing Seth's Story, the improvements that have been made and future plans to help others share their experiences through creative art forms. This interactive series of talks and discussions will cover: Hearing and seeing the person who has a terminal disease Role of creativity in understanding experience of care at end of life The power of sharing lived experiences through storytelling The role of the people who are important to the person receiving care and their role in care partnerships Understanding who and what is important to the person receiving care Can compassion be taught or is it an innate quality How to have compassionate kind and gentle conversations How can we support people to celebrate their life as life draws to an end How will the new integrated care systems help focus on palliative and end of life care What are the key challenges for the future of end of life care The event is hybrid, virtual and also hosted at Marie Curie London, 1 Embassy Gardens, Nine Elms, Vauxhall, SW11 7BW, with a complimentary sandwich lunch. Register for free if you wish to attend online only via MS Teams Register to attend in person More information is available on the event flyer

In 2014 Seth Goodburn died from pancreatic cancer 33 short and heart-breaking days after his diagnosis. Seth wanted to die at home but sadly he died in an acute hospital because the system, processes and procedures constrained the ability of healthcare staff to deliver person and family centred care. For the last 10 years Lesley Goodburn has worked to share Seth's Story to raise awareness of the signs and symptoms of pancreatic cancer, highlight the need for good psychosocial care and to improve end of life care. In the 10th anniversary year of Seth's death Lesley and colleagues provide an update on each of those areas and to launch a new educational resource which are letters that Lesley wrote to the staff involved in Seth's care six months after Seth died. These letters will give you the opportunity to reflect on your role in a patient and families journey through palliative and end of life care and you will be invited to reflect and write a letter back to Lesley and Seth Learning outcomes for participants: Understanding Pancreatic Cancer: Gain a comprehensive understanding of pancreatic cancer, its signs and symptoms, and the patient’s journey from diagnosis to end of life. This includes learning from Seth’s story and the experiences of other patients like Claire and Bradley. Delivering Person and Family-Centred Care: Understand the importance of delivering person and family-centred care, as highlighted by Seth’s experience. Learn about the healthcare systems, processes, and procedures that can either support or constrain the delivery of such care. Psychosocial Support for Patients and Carers: Learn about the need for good psychosocial care for pancreatic cancer patients and their carers. This includes understanding findings from the carer’s perspective at the end of life and the available support for patients and carers. End-of-Life Care: Gain insights into the best practices for end-of-life care, including effective communication about cancer and care in the last hours of life. Learn from the work on cancer conversations and understand how to support patients in their final days. Grief and Bereavement: Understand the process of grief and bereavement, including the impact of the Covid pandemic on bereavement. Learn about the UK bereavement commission and how to support individuals through their grief. These outcomes provide a holistic view of the patient’s journey, emphasising the importance of person-centred care, psychosocial support, and effective communication at the end of life. A reflective letter-writing exercise will further deepen the understanding and empathy of healthcare professionals towards their patients and their families. Register

The day will highlight best practice in improving safety in hospices, highlight new developments such as the implications of the new Patient Safety Incident Response Framework (PSIRF), and the new CQC Inspection Framework, and will focus on key clinical safety areas such as falls prevention, medication safety, reduction and management of pressure ulcers, nutrition and hydration, improving the response and investigation of incidents, preparing for onsite inspections and developing a compassionate culture in hospices. For further information and to book your place visit https://www.healthcareconferencesuk.co.uk/conferences-masterclasses/patient-safety-hospices or email [email protected] Follow on Twitter @HCUK_Clare #PSHospices hub members receive a 20% discount. Email [email protected]

This conference focuses on improving safety for hospice patients. The day will highlight best practice in improving safety in hospices, highlight new developments such as the implications of the new Patient Safety Incident Response Framework (PSIRF), and the new CQC Inspection Framework, and will focus on key clinical safety areas such as falls prevention, medication safety, reduction and management of pressure ulcers, nutrition and hydration, improving the response and investigation of incidents, preparing for onsite inspections and developing a compassionate culture in hospices. Register at https://www.healthcareconferencesuk.co.uk/virtual-online-courses/patient-safety-hospices or email [email protected] hub members receive a 20% discount. Email [email protected] for discount code. Follow the conference on Twitter @HCUK_Clare #PSHospices

This blog tells the story of a patient, a relation of Patient Safety Learning's Chief Digital Officer. It explains how the patient was failed by the system, seemingly a system designed to fail when its users need it most. Some of the issues described here are technology-based in nature, but the concepts are easy to grasp. A phrase that another person commented when hearing about this story was "when common sense and compassion are lost, there is no hope left for the NHS". I think we have now entered that territory (sadly). Do feel free to comment or add your own stories below.... The elderly lady who had previously been fiercely independent and dismissive of most offers of care support was declining quickly. It was a bank holiday weekend and her family were desperate for diagnostic support, and managed to track down a Consultant Geriatrician willing to see her on Sunday morning. The Geriatrician was very concerned and wrote an immediate email referring her to the local palliative care team. She confirmed to the anxious family members that this was now an 'end of life' situation and should be managed accordingly although the timescale was not entirely clear yet. In the hours after the Geriatrician left, the patient – let's call her Anne* – declined even more rapidly. The family had managed to get care support in for that night, but in the meantime were struggling to help Anne. They found the number for the local emergency palliative care team. Knowing that the Geriatrician had already made a referral, they were hopeful that help might be available quickly. The person who answered the phone asked for the patient's name, checked their computer system, and said that they couldn't find it. The family explained that the emailed referral had been made several hours earlier that day to the main palliative care team. The emergency responder explained that the two palliative care teams operated separately and had separate software systems too. The referral would not be processed until Tuesday, after the bank holiday had ended. The family asked whether the emergency palliative care call handler could send help anyway and this was rejected. The common sense and compassionate thing to do would have been to have sent help or asked for the Geriatrician's email address to confirm the referral and urgency. Neither of these were done. No help was sent. This story shows just how fragmented systems are in the NHS – two parts of the same locality's palliative care team not able to see each other's information. It also illustrates that while some clinical services may be 24/7, the administrative support that may be key to their use is 'office hours' and that no appropriate 'coping mechanism' to deal with this has been created. Lastly, it shows that the NHS is melting down in terms of how it responds to many aspects of care provision, especially urgent and emergency care. Common sense and compassion are disappearing. When they are gone, I see little hope in the NHS providing the acceptable levels of care that people need and are entitled to. *Not her real name. Related reading on the hub: Patients who experience harm provide stories, but who will really engage with their insights and opinions?

This constructive commentary reflects on two recent related publications, the Healthcare Safety Investigation Branch (HSIB) report, Variations in the delivery of palliative care services to adults, and an article from Sarcoma UK, Family insights from Dermot’s experience of sarcoma care. Drawing from these publications, Richard, brother-in-law of Dermot, gives a family perspective, calling for a more open discussion around how we can improve palliative care and sarcoma services, and why we must listen and act upon family and patient experience and insight. Update (9 August 2023): how patient stories are used is the subject of a current 'discovery phase' project led by the NHS Learn from patient safety events (LFPSE) service. See comments below this blog for more information. I believe it needs urgent attention, given my experience below, by ‘innovative’ bodies like HSIB who are meant to be exemplars- much more needs doing involving patients and families at the heart. Please participate. When my brother-in-law Dermot died from sarcoma, an aggressive cancer, the family were shocked at how fast it progressed, and the difficulties palliative services had in making a difference to his suffering. We wanted learning to come from our experience so that others need not go through the same trauma. We had never wanted a media scare story and we were not ‘complaining’ about the valuable NHS and associated services, which we know are on their knees with numerous resourcing and organisational challenges. We referred Dermot’s experience to HSIB because we wanted an investigation to be carried out by this novel, innovative, expert body to learn lessons at a general service system level. HSIB concluded their findings from the investigation in a report, Variations in the delivery of palliative care services to adults, which we welcome and support. The report touches on a real part of Dermot’s story and does provide a damning indictment of how much palliative services need to improve to provide a key national care service for anyone to access, wherever they live. However, due to the narrow scope and the methodology it uses it misses, in our opinion, many key issues of Dermot’s experience, all despite hours of our work as a family reading the medical notes, drafting and feeding back our perspectives, many times, over the course of two and half years. Our voice, insights validated by some experts in the field, recollections of what really happened, witness testimony, questions and suggestions, were harder to get fully and authentically expressed in the report. The family were disconcerted and frustrated that there were some key events that were either omitted, misrepresented or post hoc rationalised by services so as to create a story that does not wholly reflect what happened and the effect it had on Dermot and the family. Moreover, what is missed is what the family believe needs to happen to prevent a repeat trauma for others. Because of the complexity of Dermot’s case, we do not believe the report findings if implemented would make a significant enough difference to others with equally complex journeys. Fortunately, during Dermot’s sarcoma journey, the family made contact with two charities that had a patient advocacy and advice focus from trained staff with clinical nurse specialist experience. One was a local cancer charity that really understood the local services available to us, and the other was Sarcoma UK that understood sarcoma. Both encouraged open feedback and discussion from patients about what has to be done better and, vitally, the sharing of this more widely. Sarcoma UK has published our account in the article, Family insights from Dermot’s experience of sarcoma care. It covers many additional issues that were not in scope for the HSIB report, but are closely related to it – for example, patients’ experiences of services from early in the care pathway, which significantly impact their whole experience, and also the quality of care received. These cannot be neatly compartmentalised and definitely played a role in Dermot’s suffering. The family has profound regrets that this fuller experience has not been fully investigated despite detailed work by the family and correspondence and discussions with some national experts. We really hope this account starts useful and fruitful discussions with its positive and constructive suggestions. Our main recommendations examine in a clear accessible way issues like the dynamic nature of the diagnostic and prognostic process; post-surgical symptom monitoring, and the nature of expert support that is needed to enable timely, appropriate interventions should the illness deteriorate; and, finally, what implications these types of aggressive unpredictable illnesses have for delivery of all post-surgical services, including palliative services. It is designed for service providers looking at cross-service communication, but also highlights issues patients may want to consider on their journey, particularly post-surgery. Since the publication of the report, we have had correspondence with an eminent palliative expert who has suggested that the role of hands-on-specialist palliative staff and sarcoma experts does require more clarity and attention, which is not highlighted in the HSIB report but alluded to in our experience. We want to contribute our suggestions and our insights to inform service reflection and change. The NHS needs defending and resourcing, but it also needs an open, patient-centred learning culture. There is literature on ‘work as done’ and ‘work as imagined’, which is used to analyse professional work in the safety learning field. Our contribution suggests more work has to be done on ‘work as experienced by patients and families’ and ‘work as requested and needed by patients and families ‘ and how these interrelate to the ‘service-centred’ perspective, which we believe overly governed the investigation process. Are patient-centred investigations so unacceptable to the system learning process? They may, after all, provide real challenge to system-controlled processes which led to harm. We are grateful for Sarcoma UK for facilitating the expression of an alternative viewpoint at the same time as the important HSIB report, and for HSIB for giving space for a family statement in the report.