141: Living with Childhood and Young Adult Cancer

This edition of Airing Pain focuses on the treatment of pain, the importance of catering treatment to a person’s individual genetic makeup, and why addressing the psychological dimensions of pain is crucial in treating it effectively.  The process of finding a medication or treatment that works for a person often involves a lot of trial and error, which can be a frustrating process for someone to go through. This process can be side-stepped through the use of personalised medicine, where information about a person’s genetic makeup is used to tailor and optimise their treatment so it is as effective as possible. Although medication is oftentimes a vital part of treating pain, incorporating psychological treatment alongside medication can be hugely beneficial when it comes to making pain management better for those living with acute or chronic pain. Changing how someone thinks about pain can enhance their response to the physical components of the treatment they receive. Our contributors for this edition discuss the ways in which the treatment of pain can be made more effective for people by incorporating personalised medicine or psychological treatments into a person’s care plan. Please leave us a review on this platform or give feedback via our Airing Pain survey. Contributors: Professor Tony Dickenson, Professor of Neuropharmacology at University College London. Dr. Beth Darnall, PhD, Professor of Anesthesiology, Perioperative and Pain Medicine at Stanford University School of Medicine. Director, Stanford Pain Relief Innovations Lab. Professor Irene Tracey, Vice Chancellor of the University of Oxford and a Professor of Anaesthetic Neuroscience in the Nuffield Department of Clinical Neurosciences. Read transcript Thanks: This edition of was made possible thanks to funding from the Guy Fawkes Charitable Trust and support from the British Pain Society. Time Stamps: 1:11 Paul introduces Professor Tony Dickenson,who he spoke to at the British Pain Society Annual Scientific Meeting 2022. 3:21 Professor Tony Dickenson discusses ‘precision medicine’, ‘personalised medicine’, and how looking at peoples' genetic makeup can help medical professionals treat pain more effectively.  14:21 Paul introduces Dr Beth Darnall, who he spoke to at the British Pain Society Annual Scientific Meeting 2023. 14:54 Dr Beth Darnall explains the psychological components of how people experience pain. 20:24 Paul introduces Professor Irene Tracy, who he spoke to at the British Pain Society Annual Scientific Meeting 2023.  20:57 Dr Irene Tracy discusses the work she's done on neuroimaging and how the human brain constructs the experience of pain.  23:22 Paul and Dr Tracy talk about what neuroimaging tells us about the multidimensional way the human brain reacts to pain. 26:06 Beginning of discussion about Empowered Relief, a psychology-based intervention that provides people with skills and tools to help manage their acute or chronic pain.  26:31 Dr Beth Darnall discusses the psychological side of treating pain and how empowered relief is used to help people manage their pain. 29:10 Dr Beth Darnall talks about the psychological tools people learn through Empowered Relief and how they help with pain management.    Additional Resources: Airing Pain 100: Glasgow Pain Education Sessions Empowered Relief  Pain Matters 80: What treatment really works 

Coming 10 April: This edition of Airing Pain focuses on the treatment of pain, the importance of catering treatment to a person’s individual genetic makeup, and why addressing the psychological dimensions of pain is crucial in treating it effectively.   Our contributors for this edition discuss the ways in which the treatment of pain can be made more effective for people by incorporating personalised medicine or psychological treatments into a person’s care plan.  This edition will be funded by the Guy Fawkes Charitable Trust and was created with support from the British Pain Society. Contributors:  Professor Tony Dickenson, Professor of Neuropharmacology at University College London  Dr. Beth Darnall, PhD, Professor of Anesthesiology, Perioperative and Pain Medicine at Stanford University School of Medicine. Director, Stanford Pain Relief Innovations Lab. Professor Irene Tracey, Vice Chancellor of the University of Oxford and a Professor of Anaesthetic Neuroscience in the Nuffield Department of Clinical Neurosciences. 

Pain Concern would like to remind listeners that the topic of chronic pain can be uncomfortable for those with lived experience of chronic pain. Please read the description for information about this edition's content.  In a 2020 US study, it was found that ‘Implicit bias remains a contributor to healthcare disparities.’ This can be based on gender, ethnicity, disability or locality, and has the potential to affect somebody no matter their background.    In Airing Pain 142, we begin with specific references to disparities in Musculoskeletal (MSK) treatment, and how we can learn from other healthcare fields to increase patient satisfaction; we then focus on how both internal and external stigma can lead to discrimination in treatment; before ending with a discussion about why ethnic minorities are being inadvertently discriminated against in the pain management setting.   If you enjoyed this episode of Airing Pain, why not subscribe?  You can also leave us a review via our Airing Pain survey Read Transcript Contributors:  Professor Jonathan Hill is the Director of Research for the School of Allied Health Professionals, and a Professor of Physiotherapy, in the Keele School of Medicine.  Dr Ama Kissi is a post-doctoral fellow at the University of Ghent and a Clinical Psychologist.   Dr Whitney Scott is a clinical psychologist who lectures at Kings College London and is the research lead at the INPUT Pain Management Unit at Guy’s & St Thomas’ Hospital.   Time Stamps:  1:30: Professor Jonathan Hill speaks about the disparities in musculoskeletal pain treatment in primary care.  6:04: Sharing their experiences and research, Paul and Jonathan discuss the differences between Pain Management and Diabetes care.   9:59: Jonathan Hill highlights the importance of differentiating between people accessing pain management care frequently and infrequently.    15:26: Jonathan Hill alludes to the ‘Restore’ trial in Australia, and the success of integrating physiotherapists into the pain management care system.   18:44: Dr Whitney Scott talks about the stigma and discrimination of people living with pain.  24:44: Whitney Scott discusses the way that health care professionals can work with people in pain who feel stigmatised.   26:01: Paul and Dr Ama Kissi discuss the disparities in pain management for different ethnicities and hypothesise why this might be the case.   31:17: Ama Kissi shares her own experiences as a black woman in the healthcare environment - this segment discussed childbirth. Thanks:   This edition of Airing Pain was possible thanks to support from the British Pain Society  If you’re looking for more information and support on managing pain visit painconcern.org.uk.  Additional Resources:  Pain Matters 84 - This magazine issue focuses on inequalities in public health.   Stigma and Pain Management - US Department of Health and Human Services.  ‘Stigma and Chronic Pain’ - A research article published in ‘Pain and Therapy’. Further information on the Restore Trial 

This edition of Airing Pain sheds light on the unique challenges of living with cancer as a child or young adult, and the later impacts of the cancer treatment they underwent during the critical formative years. Airing Pain speaks to experts on the longitudinal impacts of cancer for these age groups; across medical, physical, and psychosocial.   Pain and fatigue are commonly reported as the most significant negative impact on quality of life when living with cancer. Until quite recently there has been little research in the area of living with cancer and experiencing medical treatments for cancer as a child or young adult during the critical formative years, and even less so on the long-term impacts these treatments can have throughout later adulthood.   Our contributors discuss a variety of determinants that impact long-term effects such as type of treatment, type of cancer, their personal resilience, and their family and social support networks. We also hear of the opportunities in improving cancer care for these age groups, particularly with the difficult transition from child to adult care units.  Contributors:  - Emeritus Professor Sam Ahmedzai, NIHR National Specialty Lead for Cancer  - Professor Diana Greenfield, Senior Consultant Nurse at Sheffield Teaching Hospitals Trust  - Ceinwen Giles, Co-CEO, Shine Cancer Support  Time Stamps:  0:50 Paul introducing Emeritus Professor Sam Ahmedzai, an internationally recognised pioneer in setting up palliative medicine. 2022 British Pain Society interview. 2:53 Discussion around later hormonal effects of some successful treatments used to eradicate and manage cancer in children and teenagers. 5:54 Professor Diana Greenfield, Senior Consultant Nurse at Sheffield Teaching Hospitals Trust, NHS, on the transition between paediatric to adult cancer care. 13:18 The importance of family-centred care. Defined as a house or unit of care that can be traditional or non-traditional but represents a holistic support network. 18:00 Ceinwen Giles, Co-CEO, Shine Cancer Support, working to provide support for people in their 20s 30s and 40s who have lived with cancer and chronic cancer. 19:00 Ceinwin Giles talking on her personal experience of receiving treatment for non-Hodgkin lymphoma and challenges in finding peers her own age who share her experiences. 21:54 Managing early-life considerations alongside cancer. Career uncertainty, mental health in jobs, as well as fertility, relationships, and dating. 23:00 The difficult transition from child to adult care, in terms of having fewer people and services supporting as an adult. There are opportunities to improve the easing of this transition, especially following the pandemic where services are stretched. 25:20 Invitation to respond to the Airing Pain survey. 26:02 Summary of the key take home messages for children and young adults, and those caring for them. Additional Resources:   Airing Pain 140: Childhood Pain - Adverse Experiences and Parental Relationships Shine Cancer Support Families and Children Resource Page  Airing Pain 118: Pain Management in Young People 

This edition of Airing Pain is on the topic of early childhood experiences.   (Content warning: includes abuse, neglect, and household dysfunction)  The World Health Organisation states that ‘adverse childhood experiences (ACE) can have lifelong consequences on a person’s health, and well-being, and can lead to a person developing persistent pain in later life’. A lot of this research is conducted in adults, and of course with changes in attitudes and beliefs surrounding raising children over the years, would they consider events in their childhood to be adverse?  Listen to learn more about this complex discussion. Find out how this kind of trauma in formative years impacts neurobiologically on the stress response, and causes changes on a structural and functional level in the brain that can predispose young people not only to pain but depression, cardiovascular disease, behaviours with increased health risks, and can have impact on mortality.   Contributors:  Dr Katie Birnie, Clinical Psychologist at the University of Calgary, on the importance of validating pain in young people.    Professor Lesley Colvin, Project Lead at Consortium Against Pain InEquality (CAPE) and Professor of Pain Medicine at the University of Dundee, and consultant in pain services.  Jen Ford, DRAP Pain Physio & Therapy Lead at Bath Centre for Pain Services & Bristol Paediatric Pain   Professor Lesley Colvin, Project Lead at Consortium Against Pain InEquality (CAPE)   and Professor of Pain Medicine at the University of Dundee, and consultant in pain services.  Professor Tim Hales, Project Lead at CAPE and a non-clinical Professor of anaethesia at the University of Dundee.  Dr Lauren Heathcote, Senior Lecturer in health psychology at Kings College London  Timestamps  2:06 Prof Tim Hales discusses the impact on ACE on chronic pain and how people respond to treatment.  7:02 Prof Lesley Colvin Professor on how ACE causes persistent pain.  16:05 Dr Lauren Heathcote discusses the psychology of pain and symptom perception in young people.  23:26 Jen Ford on the different approach required when working with children.  26:05 Dr. Katie Bernie explore the importance of children and family partnerships.  Related links  CAPE Consortium Against Pain InEquality  Health Scotland – Adverse Childhood Experiences   TED talk: Carol Dwerk – The Power of Believing you can improve  Bath Centre for Pain Services  Airing Pain survey Pain Concern Children and Families resources 

This edition of Airing Pain was recorded at the Living Well with Persistent Pain in Wales conference during Pain Awareness Month in September 2023. The topic of the conference was the launch of the revised Persistent Pain guidance first published in 2019.  The COVID-19 pandemic has changed how we live and access services. How are healthcare professionals who treat patients with persistent pain capitalising on this improved digital literacy by using a digital-first approach to improve the patient experience at their clinics? With the aim of this year's conference being to see the person and not the symptoms, how can the patient's voice be heard and kept central to ensure this is done? And finally, how can the Third Sector and the NHS work more cohesively to work towards this goal? Listen or read the transcript to find out more.  Contributors  Bethany Davies Health care support worker, Aneurin Bevan University Health Board Gethin Harries, Physiotherapist, Powys Health Board (Powys Living Well Service).  Eluned Morgan MS, Health Minister  Owen Hughes National Clinical Lead for Persistent Pain in Wales  Stephen Allan, Regional Director New Citizen’s Voice Body for Wales  Dr Sue Jeffs, National Clinical Lead for Persistent Pain Patient organisation representatives  Mary Cowern Head of Nation for Cymru Versus Arthritis  Heather Wallace, Pain Concern  Representatives of other organisations present at the event, including Health Education for Improvement Wales, Real City Strategy North Wales, Cardiff and Vales University Health Board and Case UK Ltd. Read Transcript  Feedback survey Timestamps  0:35 Eluned Morgan MS welcomes delegates to the launch of the revised Living With Persistent Pain in Wales guidelines.  3:04 Owen Hughes explains the updates to the guidelines. 6:04 Eluned Morgan MS on the feedback received regarding the guidence and how it can continue to evolve.  6:35 Representatives from Real City Strategy North Wales and Powys Living Well Service discuss how those living with pain can be supported. 12:48 Eluned Morgan MS and a representative from Cardiff and Vales University Health Board talk about self-management and peer support groups.  23:59 Mary Cowern, Neil Fowler and Bethany Davies on how the guidelines will impact their organisations.  37:39 Eluned Morgan MS on the need to reduce ineffective treatments.  38:35 Information on upskilling for healthcare professionals from Catrin from Health Education and Improvement Wales.  40:38 The Patient Voice – Stephen Allan, Eluned Morgan MS and Dr Sue Jeffs on the importance of patients informing on the services available.  48:11 Heather Wallace reflects on the event and a final request about person-centred care from Eluned Morgan MS.  Additional Resources  Living with Persistent Pain in Wale Guidance  eppcymru.org  All Wales Analgesic Stewardship Guidance   CaseUK Versus Arthritis Airing Pain 109 Fibromyalgia   Airing Pain 121: Living with Persistent Pain in Wales  Well-being of Future Generations (Wales) Act 2015 

Is self-compassion a trait or a state of being? This edition is inspired by findings that suggest stronger self-compassion is associated with reduced impact of chronic pain. Self-compassion, in this sense, is the ability to respond to pain and difficulties with kindness and openness rather than criticism. In this episode we ask our artistic contributors, and ourselves, how to step towards achieving self-compassion and the importance of movement in looking after our bodies.  This edition of Airing Pain was made possible by the invaluable contributions of our participating artists who showcased their works at the Edinburgh Fringe Festival, and those in the academic field. We learn the motives behind using dance as a way of supporting those in pain, but also expressing and communicating pain to audiences. Contributors: Dr Sarah Hopfinger, Artist and Researcher (Edinburgh Fringe: “Pain and I”) Victoria Abbott-Fleming MBE, Founder of the Burning Nights CRPS Dr Emma Meehan, Associate Professor, Centre for Dance Research, Coventry University Tali Foxworthy Bowers, Choreographer and Movement Director (Edinburgh Fringe: “Monoslogue”) Jenna Gillett, PhD Student, Department of Psychology University of Warwick The music used at the beginning of this edition was an original composition for Pain & I by Alicia Jane Turner. Images provided by Sarah Hopfinger. Read transcript Time Stamps: 1:35 – Miriam Introduces Sarah Hopfinger’s “Pain and I” performance during Edinburgh’s Festival Fringe, and asks what techniques from the world of dance offer those living with pain? 3:41 – Pacing as a technique. Also see 13:25 for Sarah Hopfinger on pacing. 6:34 – Emma Meehan, at the British Pain Society, on how dancers living with pain approach pain. 8:34 – Introducing Tali Foxworthy-Bowers 15:54 – A huge thank you, and invitation, for filling in our survey 16:20 – Emma Meehan and research into what somatic practices in movement can offer those living with pain. 18:20 – The importance of sharing and telling stories about pain experiences as an act of self-compassion for performers, and mutual connection. See also 25:53 for a continuation of this sentiment from Tali Foxworthy Bowers. 21:25 – Pain catastrophising, how we frame pain, and techniques for being kinder to ourselves with self-love and compassion. 27:54 – Suggestions of how to support those close to you who are living with pain. 31:34 – Emma Meehan discussing agency with pain, as showcased at the British Pain Society ASM 2023. 35:10 – The role of charities in patient support, and what else can charities be doing? 37:27 – Chronic pain is chronic strength: acceptance of pain as part of the bodies we love and care for. Additional Resources: Burning nights  NHS Resources Somatic Practice Dr Meehan's Book: Performing Process

This edition of Airing Pain was prompted by the 2022 NICE Guidelines which followed a Public Health England report (2019) looking at medicines associated with dependence and withdrawal. Read transcript This new legislation follows increased concerns in high levels of prescribing. This edition discusses the challenges and opportunities of de-prescribing; and poses a shift in focus towards supported self-management and de-medicalising the management of pain for some patients. By this we mean the exploration of alternative therapies and supported self-care customised to individual needs, which come hand-in-hand with any de-prescribing of medicines. We discuss the incredibly important role of the advanced pharmacist practitioner in adjusting the prescriptions of medicine, and the long-term regular use of pharmacists for these purposes. Contributors: Dr Emma Davies, Advanced Pharmacist Practitioner specialising in Pain Management Dr Keith Mitchell, Consultant in Pain Medicine at the Royal Cornwall Hospital Dr Jim Huddy, GP and Clinical Lead for Chronic Pain This edition of Airing Pain was possible thanks to support from the British Pain Society. Time Stamps: 0:49 – Paul introducing the topic NICE Guidelines 2022, following from a Public Health England report 2019 looking at medicines associated with dependence and withdrawal. 1:38 – Introducing Dr Emma Davies; advanced pharmacist practitioner in pain management, Co-Founder to Living Well With Pain, prescribing for chronic pain, and involved in setting NICE guidelines. 6:23 – The problem: knowing the medicines may be harmful but a lack of correct support in place for other ways of living with pain. Reducing this type of medicine must come hand-in-hand with proper support to living well with pain. 7:24 – What does support look like? Alternative therapies and support based on their personalised circumstances. 9:15 – Talk from the Patient Group at the British Pain Society on intersectional problems and barriers to accessing care particularly for socially minoritized individuals and groups. 13:28 – Introducing the educational resources Pain Consultants Dr Keith Mitchell and Dr Jim Huddy, at Royal Cornwall Hospital, have put together for prescribers. 14:12 – Introducing Dr Frances Cole’s 10 footstep model to pain management as another possible alternative to prescribing. 16:26 – Social prescribers and upskilling non-clinicians to provide support. 17:27 – Discussion on how to pose non-medical supported self-management to patients, in place of medicalised support.  17:49 – Explaining the Pain Café in Cornwall 20:00 – Invitation to fill in our survey 20:45 – Advanced pharmacist practitioner, Dr Emma Davis, on the diverse and essential roles pharmacists play in pain management. 21:40 – Introducing the ‘medication review’. 28:48 – The ‘healing power of a good book’: escapism techniques. More Information: Referenced Edition 123: Dr Jim Huddy Royal Cornwall Hospital, in ‘Opioids and Chronic Pain’ The Pain Café in Cornwall Imagine If – Social Prescribing Team NICE Guidelines (2022) ‘Medicines associated with dependence or withdrawal symptoms’ Living Well with Pain – Ten Footsteps Programme

What’s around the corner? This edition of Airing Pain platforms four internationally recognised clinicians from the British Pain Society Annual Scientific Meeting    Recently healthcare technology and innovation has seen a rapid acceleration, particularly following disruption caused by the Covid 19 pandemic. In this edition we look around the corner and examine the most current technological advances for pain therapy, especially those that can be used with or even in replacement of conventional medical treatments.  The Airing Pain team attended the British Pain Society ASM in 2022, to listen and interview top thought-leaders on pain technology advancements and the projects they are working on. Hear them introduce their specialist areas of: new scientific evidence for fibromyalgia; neuropathic pain in the form of phantom limb and post-surgery back pain; and cutting-edge developments in neuromodulation techniques, specifically non-invasive Virtual Reality and Gaming for treating neurological distortions.   Contributors:  Dr Stephen Ward, Chair of Scientific Committee, St Thomas Hospital London  Dr Simon Thomson, Consultant, Pain Medicine and Neuromodulation, Mid and South Essex University Hospitals NHS Trust  Dr Owen Williamson, Pain Medicine Specialist, School of Interactive Arts and Technology at Simon Fraser University Vancouver British Columbia  Dr Timothy Deer, Interventional Pain Doctor West Virginia and President of The Spine and Nerve Centers  Time Stamps:  0:20 – Introductory quotes of internationally recognised Clinicians from the British Pain Society Annual Scientific Meeting (ASM).  1:24 - Introduction by Paul Evans to British Pain Society ASM attendance.  1:58 - Dr Stephen Ward, Chair of Scientific Committee, St Thomas Hospital London, on emerging scientific evidence for the study of Fibromyalgia.  5:16 - Dr Simon Thomson, Consultant, Pain Medicine and Neuromodulation, Mid and South Essex University Hospitals NHS Trust introducing the basics of neuromodulation and neuropathic pain, using secondary back pain as an example.  11:10 – Dr Simon Thomson on the process of Spinal Cord stimulation and equipment.  18:33 - Dr Owen Williamson, Pain Medicine Specialist, School of Interactive Arts and Technology at Simon Fraser University Vancouver British Columbia, on virtual reality (VR) for chronic pain treatment, particularly the uses of VR for painful distortions.  25:05 – Dr Owen Williamson on his talk titled ‘Modifying the Matrix: Virtual Reality’ at the British Pain Society ASM.  30:22 – Dr Owen Williamson on potential drawbacks to using VR Therapy. Followed by a discussion of mitigation techniques; artificial intelligence and body sensors for patient-monitoring in virtual environments. 32:56 - Invitation to fill out our Online Survey  32:42 – Introducing Dr Timothy Deer, Interventional Pain Doctor West Virginia and President of The Spine and Nerve Centers of the Virginias on the future of personalised management and remote home programming to benefit those living with chronic pain.  39:08 - Dr Owen Williamson discussing the optimistic yet cautionary future of virtual reality and wider emerging technologies for pain therapy; the importance of preserving empathy as typically found in the doctor-patient relationship.  Special Thanks:   This edition of Airing Pain was possible thanks to support from the British Pain Society. More Information: Airing Pain 61: Deciding Together Pain Matters 73: Neuropathic Pain Issue Manage Your Pain leaflet Chronic Pain and Health Inequalities

This edition of Airing Pain examines how Covid-19 has impacted on the relationship between patient and healthcare professional. In the two or so years of living with Covid-19, the face-to-face relationship between doctors and patients was one of the first casualties. With restrictions relaxed, have we returned to the status quo, or has what was developed at breakneck speed led to new working practices?  In 2019, just months before Covid-19 became part of our lives, a workshop, ‘Experts by Experience – Working Together in Pain Management Programmes’ explored an innovative approach to pain management in which patients became integral members within the clinical pain team. Has this relationship survived social isolation and lockdowns?  Contributors include Consultant in Pain Medicine with the University Hospital Southampton NHS Foundation Trust, Dr Cathy Price and Consultant Clinical Psychologist Dr Nick Ambler of the North Bristol NHS Trust, and people living with chronic pain. Read transcript Issues covered in this programme include:  COVID, self-management of long-term conditions, peer support, communicating pain, community healthcare, patient volunteer, support group, training course, volunteering and workshops.  Time Stamps:    1:15 – Dr Cathy Price on delivery rapidly changing from face-to-face to online, having to prioritise vital healthcare, and what didn’t work remotely. 6:00 – Dr Cathy Price on the barriers the technology can create. 7:05 – Paul Evans recaps Airing Pain 119 Experts By Experience: Working Together In Pain Management Programmes 10:10 – Dr Nick Ambler talks on the Experts by Experience: Working Together In Pain Management Programmes Workshop. 14:12 – Nick on the service user involvement in delivering Pain Management Programmes and what it means for health professionals. 17:00 – Paul ask Nick how a GP could approach a repeat consultation about pain to create a productive outcome. 19:55 – How the Covid pandemic impacted the work of pain clinics. 22:25 – Paul questions whether post-pandemic approaches to healthcare will revert. 27:00 – Cathy Price on the positive outcomes of working during a pandemic. 28:00 – Nick Ambler on the impact of patients being part of the team. 30:00 – Primrose Granville on her pain management programme experience.   Contributors:  Dr Cathy Price, Consultant in Pain Medicine with the University Hospital Southampton NHS Foundation Trust  Dr Nick Ambler of the North Bristol NHS Trust  Patient-volunteer Primrose Granville, and other people living with chronic pain.   Special Thanks:  This edition of Airing Pain was supported by the British Pain Society and funded by grants from the James Weir Foundation, the Hospital Saturday Fund and the Erskine Cunningham Hill Trust.   More Information:  Pain Matters 78: managing pain during the coronavirus pandemic  Airing Pain #119 Experts by experience Working Together In Pain Management Programmes  Airing Pain 133: How Group Consultations Can Help Long COVID And Other Conditions