Airing Pain

This edition is funded by Grünenthal. Around 20 per cent of Europe’s adult population live with chronic pain and the consequences for individuals and society are devastating. In this edition of Airing Pain we head to the Societal Impact of Pain meeting in Brussels to hear from the patients, healthcare professionals and policy makers coming together to improve the lives of people in pain across the continent. Dr Chris Wells explains why pain management is a matter of life and death and how to put pain higher up the political agenda. MEP Theresa Griffin takes up the baton with a call to make the workplace accessible to those living with pain. Jane Moejlink describes the challenges of getting a diagnosis for interstitial cystitis and Sjögren’s syndrome in the face of sceptical doctors and the language barrier, while Professor Ilora Finlay makes the case for a different view of palliative care. Plus: an update from Ireland and bursting balloons to raise awareness. Contributors:  Dr Chris Wells, P

This edition is funded by the Agnes Hunter Trust. More people than ever before survive cancer, but the disease and treatment can have long-lasting effects on health, including chronic pain. In this edition of Airing Pain we visit Maggie’s Centre, Edinburgh, which pioneers a compassionate, personalised approach to supporting those with cancer and survivors of the disease. Cancer Nurse Andy Anderson explains how the tranquil, homely environment at Maggie’s gives service users a chance to regain control. Claire Tatterstall speaks about her long struggle with bone cancer, the stigma surrounding the ‘C word’ and the pain resulting from her life-saving treatment. While Claire takes her pain as a reminder that she’s ‘still here’, the immense gratitude many survivors feel can lead to their pain going unreported, says cancer pain specialist Dr Lesley Colvin. She explains why cancer can lead to chronic pain and how we can improve pain management in palliative care and for survivors. Contributors: Andy

This edition is funded by the Agnes Hunter Trust. Over ten million people in the UK live with arthritis and it is the most common cause of pain. Professor David Walsh of Arthritis Research UK explains what causes the different types of arthritis, why the nervous system is the main culprit in arthritis pain and he updates us on the most promising lines of current research into drug treatments.  But there is much more to living well with arthritis than taking medication as producer Paul Evans finds out at an Arthritis Care Wellbeing Day in Renton, Scotland. He joins a specially adapted tai chi lesson and finds out from Sharon MacPherson about what to eat and drink and what to avoid when managing the condition: ‘Sassy Water’ is in, alcohol is out. The workplace can be a challenge for anyone managing pain with 50 per cent of those with rheumatoid arthritis leaving work within a year. Hazel Muir emphasises the importance of knowing your rights and being able to explain about your pain to employers and co

This edition is supported by Forces in Mind Trust and the MacRobert Trust. In the third instalment of our Airing Pain miniseries on military veterans living with pain we focus on the relationship between pain and psychological wellbeing. Anxiety, fear and anger are common responses to pain, but guilt and post-traumatic stress disorder (PTSD) can also be heavy burdens for ex-service personnel, explains clinical psychologist Dr Alan Barrett.  Gabriel Gadikor was caught in a rocket attack while serving in Iraq and has since suffered chronic pain and psychological trauma. He describes the coping strategies he has learnt while a patient at Dr Barrett’s clinic, including using a favourite perfume to ‘ground’ himself when troubled by pain and difficult thoughts or emotions. Although attitudes in the military have begun to change, it can still be difficult for servicemen and women to admit to psychological distress and many may not be coming forward to get the support they need. Gabriel urges his former colleagu

This edition has been funded by the MacRobert Trust and the Forces in Mind Trust. Hundreds of veterans of the conflicts in Iraq and Afghanistan sustained injuries leading to the loss of one or more limbs. In the second of this Airing Pain miniseries on pain management for ex-service men and women we look at the support available to help amputees rebuild their lives. At the Specialist Mobility Rehabilitation Centre (SMRC) in Preston Gregg Stevenson tells Producer Paul Evans about his two-year journey towards regaining mobility and adjusting to civilian life after losing his lower legs in an explosion. Thanks to prosthetic legs, a dedicated team of healthcare professionals and his own determination, Gregg is now a personal trainer helping others in similar situations. Dr Fergus Jepson, who oversees the medical care at SMRC, explains why getting a prosthetic limb is just the first step on the road to recovery. Candy Bamford, the Centre’s Counselling Psychotherapist, describes how she helps veterans to

This edition has been funded by the MacRobert Trust and the Forces in Mind Trust. ‘Pain is inevitable, but suffering is optional.’ A motto tattooed onto the arm of a wounded veteran which, although easier said than done, is good advice for anyone living with pain. But how can ex-service personnel get the support they need to manage the pain and psychological trauma resulting from what are often horrific injuries? Producer Paul Evans finds out in this the first edition of Airing Pain’s miniseries on former members of the armed forces who live with pain. Infantry veteran Michael Clough, whose injuries left him with complex regional pain syndrome (CRPS) and requiring the amputation of his leg, shares his story of the difficult transition from military hospitals to NHS care. Claire Stephens, CEO of the charity Wound Care for Heroes, and herself medically-retired after injury, outlines how care can be improved. We also hear from pain management specialists with military backgrounds about the challenges faced

Tens of thousands of soldiers in the First World War survived with limb amputations, but doctors and wider society were unprepared for and often unsympathetic to the long term pain they experienced.  Professor Andrew Rice brings us up to date with developments since then in treating pain caused by nerve damage and explains what makes neuropathic pain different from everyday pain. Although the drugs used to treat neuropathic pain may have improved, side effects are still a major problem for many.  Researcher Sheena Derry discusses how we can balance out the risks and benefits. Understanding the harm caused by a drug can be challenging because even research study participants given sugar pills rather than real drugs may experience adverse effects.  Psychologist Lena Vase explains that the latest research on the placebo effect shows that it’s always worth a doctor’s time to listen sympathetically to a patient.  Contributors:  Andrew Rice, Professor of Pain Research, University College London  Sheena Derr

‘In hospital. Don’t know what’s going to happen to me.’ These words, written by a child asked to describe her pain after surgery, speak of the anxiety caused by a failure to reassure and explain. This edition of Airing Pain focuses on the communication challenges faced by children and those caring for them. Producer Paul Evans hears from Alyson Twycross and Bernie Carter – both are nurses and academics specialising in children’s pain – about how these barriers can be overcome using art produced by the children to represent their pain and its effect on them. Twycross explains why it’s important for children to be informed and involved in decisions about their care. She also gives tips for parents on helping children recover from surgery and minimise the risk of developing post-surgical pain. Contributors:  Alyson Twycross, Head of Department for Children’s Nursing, London Southbank University  Bernie Carter, Professor of Children’s Nursing, University of Central Lancashire  Zara  Aimee. #Artsandc

How can healthcare systems adapt to meet the needs of people in pain? Airing Pain returns to Northern Ireland to find out how the findings of the Painful Truth report into chronic pain will be put into practice. The Painful Truth had a big impact on decision makers – chronic pain is now recognised as a condition in its own right, healthcare professionals receive pain education and people in pain have a bigger voice in developing their services – but with resources tight and pressure on services, putting the report’s recommendations into practice won’t be easy. We hear some of the stories behind the statistics. Zara and Aimee, teenagers living with pain, talk about how they cope with the ‘invisible’ illness of pain and rising above the challenges they face in their social lives and school work. Margaret Peacock and Carrie describe their difficulties in getting help from the medical profession. Contributors:  Pamela Bell, Chair of the Pain Alliance of Northern Ireland  Prof Maureen Edmondson, Chair

In the second programme in our Good Work double bill we hear how people in pain and their families are affected by barriers to employment and support. Kieran McGee and his wife Anne-Marie tell how his neuropathic pain and a lack of ongoing support put an end to both his career and hers as she became his full-time carer. Angela O’Neill recalls having to leave the nursing job she loved and her ‘distressing’ experience of a poorly managed back to work scheme. Staff at the Health and Social Care Alliance set out how the Access to Work programme can help people managing long term conditions to overcome obstacles to getting to and thriving in the workplace. And Jason Leitch of NHS Scotland discusses the Glasgow effect – Scotland’s largest city’s inequalities of health and life expectancy – and how to reduce them. Find out more about the programmes and organisations featured in this episode: Health and Social Care Alliance Scotland Healthyworkinglives.com (NHS support for people with long term conditions an

This edition is funded by a grant from the Moffatt Trust. As many as a quarter of people with chronic pain go on to lose their jobs, so what can be done to make staying in work more achievable? We look for answers in this first of two episodes focusing on employment. ‘With the right support, many people on sick leave, could be in work or helped back to work faster’, says Dame Carol Black, independent expert advisor to the government. She explains why ‘good work’ – work where people are listened to, respected and have some control – is not only important for our mental wellbeing, but can even predict back pain. The result of Dame Black’s report into this issue was the government’s Fit to Work scheme. Occupational therapist Gerry McFeely describes how the programme aims to help those on sick leave to develop a Return to Work Plan. Contributors:  Dame Carol Black, Expert Advisor on Health and Work to Public Health England in the Department of Health  Gerry McFeely, Macmillan Consultant Occupationa

Could music be a key resource for managing pain? The results of a survey on music and chronic pain are promising, according to psychologist and musician Prof Raymond MacDonald. Meanwhile, most of us are already using music to influence our own psychological wellbeing. We don’t need to wait until the research is in, says Dr Don Knox – people in pain can already ‘build music into their everyday pain management strategies’. He explains why whether it’s Tchaikovsky or the Ramones, our own tunes make the biggest impact on pain. Finally, Producer Paul Evans gets a singing lesson from composer Gareth Williams, who explains why most of us are not breathing well and how vocal exercises can help. Contributors:  Raymond MacDonald, Professor of Music Psychology and Improvisation, Edinburgh University Dr Don Knox, Senior Audio Lecturer, Glasgow Caledonian University  Gareth Williams, Composer, Edinburgh University. #Music #Psychologicalapproachestopainmanagement

This edition is funded by a grant from the Schuh Trust. About 10% of the adult population experience disabling levels of foot pain. Producer Paul Evans hears from the experts about professional help, self-management and why we need toes. Gordon Hendry explains what podiatrists do – and it doesn’t involve using a hammer and chisel to lop off a bunion – and why we should appreciate the complex and clever structures that are our feet (and toes). More women than men are affected by foot pain. Jody Riskowski weighs up whether tight-fitting shoes are to blame. As a former elite athlete retired because of injury, Riskowski shares her experiences of rehabilitation and gives tips for finding the middle ground between overdoing it and over-resting, while Kathryn Martin tackles the issues of getting active despite foot pain. Contributors:  Gordon Hendry, Lecturer in Musculoskeletal Rehabilitation, Glasgow Caledonian University (GCU)  Dr Jody Riskowski, Lecturer, Institute for Allied Health Research, GCU  D

This edition is part of a project funded by the Health and Social Care Alliance. We know that supported self-management reduces the impact of chronic pain on daily life, but many people in pain feel they are not getting that support from their GPs. Pain Concern’s research shows how simple things like short appointment times and long waiting lists for pain management services combine with more complex problems of communication and culture to hamper self-management. And it’s not only people in pain who are frustrated with the system – GP Dr Graham Kramer outlines the problems with a medical approach that tries to fix problems that can’t be fixed. That means a difficult journey towards acceptance for people with pain and a transformation in the way doctors interact with patients from being ‘parent’ to ‘coach’. Contributors:  Katy Gordon, Researcher, Pain Concern  Martin Dunbar, Clinical Lead, Glasgow Pain Management Programme  Graham Kramer, Scottish Government Clinical Lead for Self-management and

Over 100,000 women in the UK have been affected by female genital mutilation (FGM) with devastating long-term consequences including persistent pain. Janet Graves hears from FGM survivors and the healthcare professionals treating them about this culturally-embedded practice and how to uproot it.  Hanna Gilbremedhen and Valentine Nkoyo speak about the impact being cut as children has had on their psychological and physical health as well as their relationships. Nkoyo also explains how her Mojato Foundation is working to mobilise opposition to FGM from within the communities affected. Gilbremedhen’s experience of undiagnosed chronic pain after FGM highlights the lack of knowledge among healthcare professionals. Clinics with experience in seeing women with FGM are vital, says Specialist Midwife Juliet Albert, if they are to get the care they need.  Midwife, ‘fighter’ against FGM and founder of the Hope Clinic Asia Eden shares her story and stresses the importance of education in ensuring the safety of the next

Make sure you stand up and do a few stretches after listening to this episode of Airing Pain!  ‘Movement is medicine’ for people in pain, says consultant physiotherapist Eve Jenner. But it’s about more than just exercise – physiotherapists can help people understand pain, know the difference between ‘hurt and harm’ and get a better night’s sleep. Understanding pain matters for doctors and public health officials too, argues pioneer of pain management services Professor Michael Bond. It’s not just political correctness to look at pain as a problem in itself; it’s a question of biology. Changes in the spinal cord make pain persist. Getting the message across could be a matter of life and death. Research suggests that delays in the diagnosis and treatment of persistent pain can reduce life expectancy, Dr Manohar Sharma says. He explains why working as a team of different specialists, including the person in pain, is crucial for making the complex spinal interventions he specialises in succeed. Contributors: 

Can a doctor ever be too sympathetic? Health psychologist Professor Tamar Pincus explains why this might be the case – patients with long term conditions can feel like they are being ‘looked after’ rather than taking responsibility for their own health. Pincus also clears up some myths about the role of psychology in chronic pain and makes the case for acceptance and commitment therapy (ACT) as a key part of the pain management toolkit. Acceptance can be difficult when people in pain are under pressure from those around them to be ‘the person they were before the pain’.  GP Frances Cole’s rehabilitation service puts the people – not ‘patients’ ­– she sees in control of guiding their own treatment with the aim of being the best they can be with the pain. She asks them to focus on what matters most to them and helps them connect to ‘a new world’ where they can learn skills and knowledge from other people who’ve faced the same challenges. Contributors: Tamar Pincus, Professor in Health Psychology, Depart

If someone steps on your toe, your toe hurts – simple as that, right?  Wrong! Professor Rolf-Detlef Treede explains how the brain and nervous system make pain and why we can feel pain in a part of the body that hasn’t been harmed. It’s not just a question of good science, Treede argues – better understanding will decrease discrimination against people in pain. Genes also have a role to play in the story of pain, says Professor Ana Valdes. Her research is helping to explain why some people develop conditions such as fibromyalgia, migraine or rheumatoid arthritis and others do not based on differences in our makeup at the molecular level. Even our psychological responses to pain are affected by differences in the nervous system. Valdes believes these more sophisticated approaches to pain offer hope of effective treatment in the future. Contributors:  Ana Valdes, Associate Professor and Reader, Faculty of Medicine & Health Sciences, University of Nottingham  Rolf-Detlef Treede, Professor of Neur

This edition is funded by a donation from the residents at Falcon House, Edinburgh. It’s well established that pain needs to be understood and treated as a biopsychosocial problem, but what about the spiritual side of life? Professor of nursing and Anglican chaplain Michelle Briggs speak to Paul Evans about how some people in pain can find relief and meaning in the prayer and community engagement offered by their faith. We’ve looked at the issue of pain education before – Emma Briggs gives an update on the struggle to increase pain training for doctors and improve its quality. Her interdisciplinary pain management course brings healthcare professionals together with a focus on empathy, working as a team and understanding the importance of drug and non-drug treatments. Physiotherapy and mental health care might seem at opposite ends of the pain management spectrum, but physiotherapist Nathan Goss sets out why we have to see pain as a mind-body problem and argues that mental health difficulties are ‘s

Friends don’t always understand, they don’t get out much and they’re faced with daunting responsibilities, but they wouldn’t change a thing about their families. So say the young people Paul Evans meets at a support day for carers in south east Wales. There are 178,000 young carers in England and Wales doing unpaid work for parents too ill to perform essential household tasks or even look after themselves. Kerris Olsen-Jones, who works to support these children and young people – some as young as five years old – says that they sometimes ‘miss the opportunity to be children’. She and her colleagues help the young people to socialise and make the most of the opportunities available to them. However, many young carers do not see themselves as carers, so may not get access to support. Ethan Mason, who cares for his mother who has fibromyalgia, describes how as an adolescent he had to deal with a house fire alone, while fire safety officer Julie Goodfield gives fire prevention tips for people with disabilit