If you want to get in touch with Pain Concern you can write to them at: Unit 1-3, 62-66 Newcraighall Road, Fort Kinnaird, Edinburgh, EH15 3HS or for more information and other ways to get in contact with them, you can visit their website, www.painconcern.org.uk
, where you can also visit their forums and read the programme blog!
Airing Pain Helpline: 0300 123 0789 There are a number of ways you can donate to Pain Concern click here to find out more!
Airing Pain programme 95: CRPS – Part II
In the second part in Airing Pain’s series on complex regional pain syndrome, Paul speaks to specialists and patients at the Royal National Hospital for Rheumatic Disease CRPS rehabilitation programme in Bath.
Funding acknowledgement: This programme was funded by grants from the RS MacDonald and the Hospital Saturday Fund.
Complex regional pain syndrome affects 1 in 3,800 new people every year in the UK. It is a poorly understood condition and it can be frustrating for patients who are suffering to find peace of mind. The Royal National Hospital for Rheumatic Disease in Bath began its rehabilitation service for individuals with CRPS in 1999 and is one of the very few in the UK with outpatient and inpatient care dedicated to CRPS.
The centre, led by Professor Candy McCabe, strives to improve patients’ lives through up-to-date multidisciplinary techniques ranging from occupational therapy to mirror visual feedback (MVF).
Michael and Julie, patients currently enrolled in the rehabilitation programme, speak to Paul about the injuries that caused them to develop the syndrome, how it affects their lives, and how the programme is helping them cope.
Paul also sits in on a session with Senior Physiotherapist Emma Houlihan and patient Chris, whose entire left side of his body has been affected by CRPS, to explore the therapies used at the centre to try to help him regain normal sensation.
Clinical Specialist Physiotherapist Jane Hall describes the process that new patients will go through, and how the centre helps patients even after they have left the programme.
Airing Pain programme 94: Complex Regional Pain Syndrome – Part I
Experts and sufferers discuss the causes and potential management of CRPS, and, if it can help us better understand how our bodies react to stimuli
Funding acknowledgement: This programme was funded by a grant from the RS MacDonald
The first of two programmes on complex regional pain syndrome, or CRPS, which can be described as continuous and sometimes debilitating pain that can be confined to one limb, but has been known to spread to other parts of the body. CRPS is poorly understood, and no direct cause has been identified.
In this edition of Airing Pain, Paul Evans speaks to Sunny Boshoff, author of CRPS Awareness: Moving Against Pain, who has had her own experiences with the syndrome, describing the agonising sensations she felt while living with CRPS.
Professor Frank Birklein, head of the Peripheral Nerve Disorders and Pain Research and Treatment at the Department of Neurology, University Medical Centre Mainz in Germany is one of the world’s leading authorities on CRPS. He explains the meaning behind the syndrome’s name, what can cause it, and how understanding of the disease has progressed.
Clinical lead for the complex regional pain syndrome service at the Royal United Hospitals in Bath, Professor Candy McCabe, speaks about her experiences of treating people suffering from the disease, how it effects their emotional wellbeing, and the psychological therapies used to help people manage their pain.
– Sunny Boshoff, author of CRPS Awareness: Moving Against Pain
– Professor Frank Birklein, head of Peripheral Nerve Disorders and Pain Research and Treatment at the Department of Neurology, University Medical Centre Mainz
– Professor Candy McCabe, clinical lead for the CRPS service at the Royal Hospitals in Bath and the Florence Nightingale Foundation Chair in Clinical Nursing Practise Research at the University of West England Bristol
For more information on CRPS, visit:
– NHS Choices CRPS http://www.nhs.uk/Conditions/Complex-Regional-Pain-Syndrome/Pages/Introduction.aspx
– CRPS UK, a patient led organisation for people with CRPS https://crps-uk.org/
Airing Pain programme 93: Easy Being Green
Airing Pain al fresco: the benefits of gardening for our physical and mental health, and why, when it comes to green space, size isn’t everything…
Funding acknowledgement: This programme was funded by a grant from The D’Oyly Carte Charitable Trust.
Getting some gentle exercise tops the NHS’ list of ten self-help tips for managing pain, with distraction and communication also playing important roles. In this episode of Airing Pain we see how gardening can help with all three, and the benefit for our minds as well as our bodies.
We talk to Craig Lister and Chris Speirs from The Conservation Volunteers about their community garden project Green Gym, which brings together volunteers in shared green spaces in cities across the UK. One such space is Waterlow Park in London, where Paul chats to volunteers Maddy and Rosie about how the weekly sessions have helped them overcome difficulties including depression, anxiety and chronic pain.
A few miles away from Waterlow Park is the Rheumatology department at Whipps Cross Hospital, where clinical nurse specialist Margaretta Rooney created a garden designed specifically with the needs of patients with arthritis in mind. Raised beds allow people to sit down as they weed, reducing stress on the joints, and a patio means there’s no need for mowing or other heavy equipment.
For fifteen years, volunteers Brian and Josephine have been meeting up each week to help tend to the garden. Brian explains how, thanks to Margaretta, even with arthritis in his hands he still has green fingers and enjoys the social aspect of being out in the fresh air with his friend. Josephine describes the vital role the garden played in managing her chronic pain and depression, and the feeling of giving back to the department and hospital community.
Chris Speirs, Health Development Manager The Conservation Volunteers
Craig Lister, Managing Director of the TCV Green Gym
Maria Schlatter, Project Officer at TCV Green Gym
Josephine, Whipps Cross Hospital garden volunteer
Brian, Whipps Cross Hospital garden volunteer
Margaretta Rooney, clinical nurse specialist in rheumatology at Whipps Cross University Hospital NHS Trust
Rosie, Green Gym volunteer
Maddy, Green Gym volunteer
For advice on gardening with disability and specially adapted equipment, see Thrive: http://thrive.org.uk/thrives-carry-on-gardening-website.aspx
The gardening and arthritis booklet leaflet mentioned by Margaretta can be ordered or downloaded from the Arthritis Research UK website: http://www.arthritisresearchuk.org
To get involved with a TCV green gym near you, visit The Conservation Volunteers: https://www.tcv.org.uk/greengym
To contact Margaretta, email firstname.lastname@example.org and we’ll put you in touch!
Airing Pain programme 92: Diabetic Neuropathy
Watch your step: with 80% of amputations preventable with the proper care, we discuss diabetic neuropathy & why we should treat our feet.
Funding acknowledgement: This programme was funded by a grant from The Schuh Trust.
There are around 4.5 million people living with diabetes in the UK, and every day more than 20 leg, foot or toe amputations are carried out as a result of diabetic neuropathy. This is particularly shocking, as four out of five of these amputations could have been avoided with proper care .
In this episode of Airing Pain we talk to Linda McGlynn from Diabetes Scotland and clinical specialist physiotherapist Ben Davies. Linda explains how diabetes affects the nervous system and why it’s so important to look after our feet.
People with diabetes are often bombarded with advice on diet and exercise, however as with any long term condition it can affect all aspects of life. Ben describes some the results of his research into pain management for those with diabetic neuropathy, and why diabetes specialists left feeling “clinically impotent” should look towards the pain community for better treatment models.
Ben Davies, clinical specialist physiotherapist in pain management at Sirona CIC
Linda McGlynn, Patient and NHS Engagement Manager Diabetes Scotland
For more support and information on living with diabetes, as well as advice on how to look after your feet, visit:
NHS Choices http://www.nhs.uk/Livewell/foothealth/Pages/Diabetesandfeet.aspx
Diabetes UK ‘Putting Feet First’ https://www.diabetes.org.uk/putting-feet-first#camp
Figures from Diabetes UK: https://www.diabetes.org.uk/putting-feet-first, https://www.diabetes.org.uk/Professionals/Position-statements-reports/Statistics/Diabetes-prevalence-2016/
Airing Pain programme 91: Gout
“Not a rich man’s disease” We talk to campaigners, MPs, patients and specialists about the most common form of inflammatory arthritis: gout
Funding acknowledgement: This programme was funded by a grant from The Schuh Trust.
Gout is the most common form of inflammatory arthritis and affects 1 in 40 people in the UK. So why do we still see it as something that exists only in the pages of Victorian novels? In this episode of Airing Pain we go inside the Houses of Parliament and speak with MPs, clinicians, patients and UK Gout Society members to find out why.
What is gout?
Gout is a type of arthritis caused by a build-up of uric acid crystals in the joints, most frequently the feet. As with many conditions, flare-ups can be brought on by a number of factors including lifestyle, stress and diet. Some people, however, have a genetic predisposition. Paul Webber and Alan Hughes both suffer with gout, describing the pain as being repeatedly being kicked in the shin and worse than a red-hot poker.
What’s the treatment?
Treatments for reducing pain during attacks include icing the joint and taking medications, however there are also long term treatments. There are lifestyle changes we can make, such as consuming less yeast-rich food and drink, staying active and drinking plenty of water. Despite being relatively inexpensive to treat, gout comes at a great cost to the economy and society, as the Chief Executive of ARMA, Sue Brown, highlights.
Consultant Rheumatologist Dr Jonathon Rees identifies a lack of awareness in primary care, with cases often going undiagnosed. Paul also talks to Michael Snaith about his early gout and gender research at the UK’s first gender reassignment, and Lord Ramsbotham sums up perfectly why gout really is no laughing matter.
Jim Shannon MP for Strangford
Dr George Nuki, professor of rheumatology at the University of Edinburgh
Paul Webber, gout sufferer
Alun Hughes, gout sufferer
Dr Tim Tait, Consultant Rheumatologist, Royal Hallamshire Hospital
Stuart Reed, gout sufferer and patient trustee of the UK Gout Society
Dr Jonathan Rees, Consultant Rheumatologist and Sports Medicine, Cambridge University Hospitals NHS Foundation Trust
Dr Adrian Dunbar, GP with a special interest in musculoskeletal medicine and chronic pain
Sue Brown, Chief Executive of Arthritis & Musculoskeletal Alliance
Dr Michael Snaith, retired Consultant Rheumatologist and trustee of the UK Gout Society
Lord Ramsbotham, cross bench member of the House of Lords and gout sufferer
Lynsey Conway, UK Gout Society Secretariat
For more support and information on Gout, visit:
*UK Gout Society
Airing Pain Programme 90: Back Pain
Paul talks to physiotherapist David Rogers about psychological approaches to managing and reducing the most common cause of chronic pain
Funding acknowledgement: This programme was funded by a grant from The Schuh Trust.
Back pain causes more disability than any other condition in the UK. It is the second most common cause of absence from work, resulting in the loss of four million working days per year. This comes at a heavy price not only for the NHS, the Department for Work and Pensions, and the UK economy – reported to be costing each £480 million, £5 billion and £9.6 billion a year respectively – but for the increasing number of us who will experience back pain at some point in our lives.
Over 40% of over 50s go on to develop back pain, and with an ageing population it’s more important than ever that we know what we can do to prevent, reduce and manage this common but debilitating ailment.
Dr David Rogers is an Orthopaedic Physiotherapy Practitioner at the Royal Orthopaedic Hospital in Birmingham. In 2016 he co-authored the book ‘Back to Life: How to unlock your pathway to recovery (when back pain persists)’ with Dr Grahame Brown, in which readers can find clear, practical strategies for managing and relieving low back pain. David explains the ideas behind the book, the biopsychosocial model and why it’s so important, while Paul tries some 7:11 breathing and relaxation techniques.
*Dr David Rogers, Orthopaedic Physiotherapy Practitioner at Royal Orthopaedic Hospital, Birmingham and co-author of ‘Back to Life: How to unlock your pathway to recovery (when back pain persists)’
For more support and information on living with persistent back pain, visit:
*NHS Choices: back pain
*National Ankylosing Spondylitis Society
To order a copy of David’s book, Back to Life, via Amazon click here
Airing Pain Programme 89: Dementia
Discussing the challenges and pitfalls of pain management in people with dementia, different medications and why an iPod could be the most powerful tool in our first aid kit.
Funding acknowledgement: This programme was funded by grant from W G Edwards and the Cruden Charitable Foundation.
pain in the elderly
According to a survey carried out by the Alzheimers Society, Dementia is the most feared health condition in the UK. Last year alone, 225,000 people developed dementia.
Paul talks to Professor Peter Passmore about the challenges of treating chronic conditions in people who develop dementia, including different medications and why we instinctively link age with pain.
In 2012 Lloyd Hughes authored a report, Managing Chronic Pain in Patients with Dementia. Now a GP trainee, Lloyd discusses how he incorporates his findings into every day patient care and what we can do as individuals to prepare for a future that may well include dementia.
Andy Lowndes, Deputy Chair of Glasgow based charity Playlist for Life, describes the power of music in helping those living with dementia – whether as a patient, carer or loved one – connect with each other and reconnect with themselves.
*Professor Peter Passmore, Professor of ageing and geriatric medicine at Queen’s University Belfast
*Dr Lloyd Hughes, GP trainee specialising in geriatric and stroke medicine at the Royal Infirmary Edinburgh
*Andy Lowndes, Deputy Chair of Playlist for Life
For more support and information on living and caring for people with dementia, visit:
Playlist for Life
NHS dementia guide
Airing Pain Programme 88: Interstitial Cystitis
Women share their experiences of living with persistent bladder and pelvic pain, with advice on managing life and relationships.
This edition has been funded by a grant from the Women’s Fund For Scotland. https://www.womensfundscotland.org/
Interstitial cystitis, a.k.a painful bladder syndrome, is a poorly understood bladder condition that causes long-term pelvic pain and problems with urination. The charity Bladder Health UK estimates that 400,000 people in UK live with the condition. Of them, 360,000 are women.
Anne Cameron, retired nurse and now coordinator for Bladder Health UK in Scotland, explains the varied symptoms and treatments available, and how certain factors can make the path to diagnosis far from smooth for some women.
Jen stresses the importance of support groups in alleviating feelings of stress and isolation, and Pat describes how she overcame her initial reservations to try different self-management techniques, including yoga and mindfulness.
Dr Shona Brown is a clinical psychologist and part of the multi-disciplinary team at the EXPPECT pelvic pain clinic in Edinburgh’s Royal Infirmary. She describes the impact of pelvic pain on patients’ emotional wellbeing and why it’s important to include a psychological approach in pain management programmes.
*Anne Cameron, retired nurse and Scotland Coordinator for Bladder Health UK
*Jennifer Hayes, pelvic pain support group member
*Pat Brown, patient at EXPPECT clinic at Edinburgh Royal Infirmary
*Dr Shona Brown, clinical psychologist at the EXPPECT clinic at Edinburgh Royal Infirmary
For more support and information on living with pelvic pain, visit:
Airing Pain Programme 87: Vulvodynia
From diagnosis difficulties to defining gender: the effects of vulvodynia on women today
This edition has been funded by a grant from the Women’s Fund For Scotland. https://www.womensfundscotland.org/
Vulvodynia is a nerve-based pain, often described as a burning or stinging sensation, which affects the vulva. 1 in 7 seven women are estimated to experience vulvodynia at some stage during their life and the condition can be very distressing to live with, impacting on everything from clothing choices to relationships.
Dr Winston de Mello explains why many women with Vulvodynia experience difficulties on the path to diagnosis and why GPs under pressure create a “postcode lottery” for those in pain without any visible symptoms.
Dr Rebekah Shallcross describes what she found in her research into women’s experiences of Vulvodynia, including sexist treatment by some healthcare professionals, a lack of awareness of the condition within the medical community and the stigma associated with genital pain. The role played by penetrative sex in social constructions of female identity can create feelings of guilt and shame in patients with Vulvodynia where physical intimacy is problematised by pain, feelings which Dr Shallcross links with historical gender inequality and patriarchal attitudes towards sex.
Gynaecology consultant Dr David Nunns discusses the importance of the “four Ps” in patient treatment and improving the lives of those with Vulvodynia: patient education, pain modification, physiotherapy and psychological support. Plus the importance of discourse in raising awareness and reducing pain and associated stress.
*Dr Winston de Mello, Consultant in Anaesthesia and Pain Medicine, University Hospital of South Manchester
*Dr Rebekah Shallcross, trainee clinical psychologist and a research associate at the University of Manchester
*Dr David Nunns, gynaecology consultant at Nottingham City Hospital. He is a trustee of the Vulval Pain Society.
For more information and support on Vulvodynia visit the Vulval Pain Society.
Airing Pain Programme 86: Sickle Cell disease
Patient and clinician perspectives on living with Sickle Cell disease and the importance of a multidisciplinary approach.
This edition has been funded by donations from Pain Concern’s friends and supporters.
For a full transcript of this programme please click here.
An estimated 15,000 people in the UK are living with Sickle Cell disease and at least 250,000 are carriers. Dr Elizabeth Rhodes explains the causes and symptoms of the genetic blood disorder, the areas where it is most prevalent and who is affected.
One such patient is Khadijat Jose, who describes her experiences growing up in Nigeria and why being a carrier of the disease is an advantage in countries with Malaria. For those with the condition however, each day can bring severe pain often requiring admission to hospital. Dr Oliver Seyfried highlights the life-limiting effects of this pain, especially on young people, and the challenges it poses in all spheres of life.
Self-management is therefore hugely important for those with Sickle Cell disease, whether the pain experienced is mild or severe. Paul discusses the different approaches taken by the Red Cell Pain Management team at St George’s Hospital with clinical psychologist Dr Jenna Love and specialist physiotherapist Rebecca McLoughlin. Both emphasize the importance of being able to tackle sickle cell pain from an emotional and psychological perspective as well as a physical one.
* Dr. Elizabeth Rhodes, consultant haematologist at St. George’s Hospital in London
* Khadijat Jose, PhD student at Cardiff University
*Dr. Oliver Seyfried, consultant in pain medicine and anaesthesia at St. George’s Hospital in London
*Dr Jenna Love, clinical psychologist at St George’s Hospital in London
* Rebecca McLoughlin, specialist physiotherapist at St George’s Hospital in London
*For more information about Sickle Cell disease visit the Sickle Cell Society website:
*For more information on the National Sickle Cell Screening Programme and parent education in England visit : https://phescreening.blog.gov.uk/category/sct/
Airing Pain Programme 85: Pain in Europe
Why pain is a matter of life and death, the struggle for diagnosis and challenging misperceptions of palliative care.
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.
* Dr Chris Wells, President of the European Pain Federation (EFIC®)
* Jane Meijlink, Chairman of the International Painful Bladder Foundation
* Dr Martin Johnson, President of the Royal College of General Practitioners and Co-Chair of the Chronic Pain Policy Coalition
* Ilora Finlay, Professor of Palliative Medicine, Cardiff University
* John Lindsay, Chairperson, Chronic Pain Ireland
* Joop van Griensven, President, Pain Alliance Europe
* Theresa Griffin, MEP for the North West of England
Find out more about the Red Balloon project and post your photo online:
click here to find out more
about the Societal Impact of Pain Platform
Airing Pain Programme 84: Cancer pain (12.7.16)
How cancer survivors can manage long term pain and creating a home from home at the hospital.
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.
* Andy Anderson, Cancer Nurse, Maggie’s Western General Hospital, Edinburgh
* Claire Tattersall
* Dr Lesley Colvin, Consultant/Reader in Pain Medicine in the University department of Anaesthesia, Critical Care and Pain Medicine, Western General Hospital, Edinburgh
Airing Pain Programme 83: Arthritis: from self-help to cutting edge research 28/06/2016
Getting moving with tai chi, staying in work and why arthritis pain is not all about the joints.
Funding acknowledgement: 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 colleagues.
* David Walsh, Professor of Rheumatology, University of Nottingham and Director, Arthritis Research UK Pain Centre
* Sharon MacPherson, Project Officer – Joint Activity, Arthritis Care
* Hazel Muir, Employability Officer, Arthritis Care
Airing Pain Programme 82: Pain, PTSD and perfume
The emotional and physical impacts of injury and how to cope with them.
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 colleagues facing the same issues to seek help: ‘the longer you keep your problem, the more difficult it is to treat’.
* Dr Alan Barrett, Clinical Lead, the Pennine Care Military Veteran Service for Greater Manchester and Lancashire
*Gabriel Gadikor, army veteran
Anyone who has served in the British armed forces can be referred or self-refer to any of the Military Veteran Services across the UK. Visit the Pennine Care Military Veteran Service website to find out more: www.penninecare.nhs.uk/your-services/military-veterans-service.
Airing Pain Programme 81 : Life after limb loss (31.5.16)
Supporting amputee veterans to rebuild their lives, and psychological techniques beyond words.
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 control their pain and confront traumatic memories by using psychological techniques better suited to the military background of her patients than the more typical ‘talking therapies’.
* Dr Fergus Jepson, Consultant in Amputee Rehabilitation Medicine, Specialist Mobility Rehabilitation Centre (SMRC), Preston
* Candy Bamford, Counselling Psychologist, SMRC, Preston
* Gregg Stevenson, Personal Trainer, SMRC, Preston
Airing Pain Programme 80: Suffering is optional (17.5.16)
Improving treatment for veterans in pain and facing the challenges of civilian life.
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 by this patient group. Vincent De Mello explains why ex-servicemen in pain often feel abandoned and says that the effects reach beyond the individual to the whole family, while Dominic Aldington discusses the problem of veterans feeling their pain is disbelieved by civilian clinicians.
* Dr Winston De Mello, Consultant in Anaesthesia and Pain Medicine, Wythenshawe Hospital, Manchester
* Michael Clough, army veteran
* Lt Col Dr Dominic Aldington, Consultant in Pain Management and Clinical Lead, Hampshire Hospitals NHS Foundation Trust
Side effects, placebos and a brief history of nerve pain
Making sense of side effects, the power of placebo, and the improving treatment of neuropathic pain.
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.
* Andrew Rice, Professor of Pain Research, University College London
* Sheena Derry, Senior Scientific Officer, Pain Research Unit, University of Oxford
* Lena Vase, Professor of Psychology, Aarhus University
* Michael Clough, army veteran
Programme 78: Putting children’s pain in the picture
How children can express their pain in art, plus tips for parents.
‘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.
* Alyson Twycross, Head of Department for Children’s Nursing, London Southbank University
* Bernie Carter, Professor of Children’s Nursing, University of Central Lancashire
Programme 77: Realising the Painful Truth (22.12.15)
Putting patients first, and teenage life with pain.
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.
* Pamela Bell, Chair of the Pain Alliance of Northern Ireland
* Prof Maureen Edmondson, Chair of the Patient and Client Council in Northern Ireland
* Louise Skelly, Head of Operations at the Patient and Client Council in Northern Ireland
* Meave McLaughlin, Member of the Legislative Assembly of the Northern Ireland Assembly Health Committee
* Margaret Peacock, Chair of Fibromyalgia Support Northern Ireland
* Dr Anne Kilgallen: Deputy Chief Medical Officer, DHSSPS, Northern Ireland
* Tricia Bowers, Training Manager, Arthritis Care Northern Ireland
* Christine McMaster, Pain Forum Northern Ireland
Programme 76: Pain, poverty and employment (8.12.15)
How to break the links between poverty, pain and unemployment
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 and their employers)
Access to Work
* Professor Jason Leitch, Clinical Director of the Healthcare Quality Unit, NHS Scotland
* Kieran McGee
* Anne-Marie McGee
* Angela O’Neill
*Andrew Strong, Policy and Information Manager, the Health and Social Care Alliance Scotland
* Louise Coupland, Health and Employability Manager, the Health and Social Care Alliance Scotland
Airing Pain Programme 75: Back to work (24.11.15)
How to move from sick leave to ‘good work’.
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.
* Dame Carol Black, Expert Advisor on Health and Work to Public Health England in the Department of Health
*Gerry McFeely, Macmillan Consultant Occupational Therapist for Cancer and Long Term Health Conditions Specialising in Vocational Rehabilitation, Astley Ainslie Hospital, Edinburgh
This edition is funded by a grant from the Moffatt Trust.
Airing Pain Programme 74: Music ( 10.11.15)
Tune in and turn down the volume on pain.
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.
* Raymond MacDonald, Professor of Music Psychology and Improvisation, Edinburgh University
*Dr Don Knox, Senior Audio Lecturer, Glasgow Caledonian University
* Gareth Williams, Composer, Edinburgh University
Airing Pain Programme 73: Foot Pain (27.10.15)
Taking care of our feet, plus, why we need toes.
About ten per cent 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.
* Gordon Hendry, Lecturer in Musculoskeletal Rehabilitation, Glasgow Caledonian University (GCU)
* Dr Jody Riskowski, Lecturer, Institute for Allied Health Research, GCU
* Dr Kathryn Martin, Lecturer in Epidemiology, University of Aberdeen
This edition is funded by a grant from the Schuh Trust.
Airing Pain Programme 72:Breaking the barriers to managing pain (13.10.15)
Why self-management isn’t working and what we can do about it.
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’.
* Katy Gordon, Researcher, Pain Concern
* Martin Dunbar, Clinical Lead, Glasgow Pain Management Programme
* Graham Kramer, Scottish Government Clinical Lead for Self-management and Health Literacy
Airing Pain Programme 71: Protect our girls.
Persistent pain and the fight to end female genital mutilation.
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 generation.
For a comprehensive list of FGM clinics and resources visit forwarduk.org.uk
For more information on the Mojato Foundation visit valentinenkoyo.com
The Hope Clinic: fgmhopeclinic.co.uk
* Juliet Albert, Specialist FGM Midwife, Queen Charlotte Hospital, Imperial College Healthcare NHS Trust and Project Lead at the Acton African Well Woman Clinic
* Valentine Nkoyo, Mojatu Foundation, Nottingham
* Hana Gibremedhen, Mojatu Foundation, Nottingham
* Aisa Eden, Specialist Midwife
Airing Pain Programme 70: The case for pain management.
Movement as medicine and putting pain management centre stage.
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.
* Michael Bond, retired professor of psychological medicine
* Manohar Sharma, Clinical Director of Pain Medicine at The Walton Centre, Liverpool
* Eve Jenner, independent consultant physiotherapist
Airing Pain Programme 69: People not patients.
Haring decisions and why pain management needs psychology.
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.
* Tamar Pincus, Professor in Health Psychology, Department of psychology, Royal Holloway, University of London (RHUL)
* Frances Cole, GP and Pain Rehabilitation Specialist
Airing Pain Programme 68: The brain and the genes.
The science behind pain and its treatment, and why understanding it matters.
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.
* Ana Valdes, Associate Professor and Reader, Faculty of Medicine & Health Sciences, University of Nottingham
*Rolf-Detlef Treede, Professor of Neurophysiology, Heidelberg University, Germany
Airing Pain Programme 67: Biopsychosocial and spiritual.
The place of faith in pain relief, plus physiotherapy meets mental health, and educating doctors.
Funding acknowledgement: 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 ‘something we all experience’.
* Michelle Briggs, Professor of Nursing, Leeds Metropolitan University and Anglican chaplain
* Emma Briggs, Lecturer, King’s College London and Chair of the British Pain Society Pain Education Special Interest Group
* Nathan Goss, Senior Physiotherapist, Pain Management Programme at the Walton Centre, Liverpool
Airing Pain Programme 66: Not a Burden.
he challenges facing young people in caring roles and ways to support them.
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 disabilities and their carers.
More information on support for young carers can be found at childreninwales.org.uk
Visit our webpage for young adult carers to listen to more Airing Pain programmes on this topic and find out more about the help available across the UK: painconcern.org.uk/how-we-help/young-adults.
* Adrian, Amy, Courtney, Emma, Ethan, Leon, Sophie, Tom, young carers
* Kerris OIsen-Jones, Young Adult Carer Development Worker
* DJ, Young Adult Carer Support Worker
* Julie Goodfield, Fire Safety Officer
Airing Pain Programme 65: Hypnosis And Unexplained Pain.
Bringing mind and body together to reduce pain with self-hypnosis.
In this edition of Airing Pain we hear how healthcare professionals can use hypnotic techniques to help people in pain. This is not the hypnosis of stage performances, but rather simple skills that can be mastered by most people.
When patients enter the ‘meditative-type’ state of hypnosis they are able to use the imagination to change the perception of their pain and even reduce its intensity, says retired GP Dr Ann Williamson. More than just relaxation, hypnosis, she argues, gives us access to ‘mind-body links’ that are ideally suited for addressing both the physical and emotional dimensions of pain.
Dr Jane Boissiere, also a doctor practising hypnosis, calls the lack of availability of hypnosis on the NHS ‘a tragedy’. She believes it is the most effective way of addressing medically unexplained symptoms by targeting emotional trauma in a way that puts the patient in control.
Dr Ann Williamson, British Society of Clinical and Academic Hypnosis
Dr Jane Boissiere, British Society of Clinical and Academic Hypnosis
Airing Pain Programme 64: Patients Pills And Policies.
Making pain patients’ voices heard across Europe and changing the prescribing culture.
Almost 100 million EU citizens have chronic pain, but there is still much progress to be made in improving diagnosis and treatment. Pain Concern’s Rowena Jacobs attended the fifth Societal Impact of Pain symposium to find out how patient groups, healthcare professionals and policy makers are coming together to push pain up the agenda.
We hear about a successful initiative to change the culture around opioid prescriptions in Italy and the problems facing patients across the continent due an excessive fear of drug dependence, while Northern Irish representatives explain how the Painful Truth campaign has brought the patient experience of pain home to healthcare professionals and policy makers, leading to greater recognition of pain.
Pain specialists at the forefront of the campaign for better care explain why education and awareness raising is still such an important issue and Lars Møller, representing a Danish patient group, recalls his struggle to be get treatment for pain in the face of ignorant healthcare professionals. Finally, people in pain are urged to get involved in the fight for better pain management services by putting pressure on politicians.
Lars Møller, Vice President, Danish Association of Chronic Pain Patients
Prof Hans Kress, Head of Department of Special Anaesthesia and Pain Therapy, Medical University of Vienna
Dr Giustino Marassi, Pain Specialist, Italy
Dr Willem Scholten, International Doctors for Healthier Drug Policies (IDHDP)
Neil Betteridge, Vice Chair of the Chronic Pain Policy Coalition in the UK
Louise Skelly, Head of Operations, Patient and Client Council, Northern Ireland
Dr Pamela Bell, Chair of the Pain Alliance of Northern Ireland
Dr Chris Wells, President, European Pain Federation
Airing Pain Programme 63: Interventional Pain Management.
From blocking nerves to spinal cord stimulators: how interventional approaches can help.
Physiotherapy, exercise, medications and clinical psychology all play an important role in pain management, but what happens if these treatments don’t give people the relief they need to get their lives back on track?
For some patients, more invasive treatments can make a big difference, but there are often difficult decisions to be faced, as Paul Evans discovers from sitting in on one of specialist in interventional pain management Dr Ron Cooper’s clinics in Causeway Hospital, Coleraine.
We hear from patients who have often waited years before being referred to the clinic where they will be considered for interventional treatments such as spinal cord stimulation, nerve-blocking injections and radio frequency treatment. Dr Cooper explains why interventional treatments are more appropriate for some patients than for others, how they are thought to work and why it’s important to see them as part of a broader pain management strategy.
Airing Pain Programme 62: Independent Living.
How to get support in regaining independence and the physical and mental health benefits of social exercise.
How can people left disabled and housebound by chronic pain be supported to live independently? Producer Paul Evans visits two Edinburgh-based organisations with different approaches to transforming the lives of people in pain.
The Lothian Centre for Inclusive Living (LCIL) is run by disabled people for disabled people with the aim, as its name suggests, of helping people to live full lives despite their condition. A key part of their service is supporting people as they apply for the benefits to which they are entitled in an often confusing and frustrating system. Jacqueline Todd recalls her struggle to be recognised as eligible for the Personal Independence Payment (PIP) and the freedom she has gained from adaptations to her home.
At the Thistle Foundation Paul speaks to members and staff about how their exercise and lifestyle classes bring people ‘out of the darkness’ of social isolation and pain. John Cunningham found the ‘supremely fit’ people at his local gym intimidating, but the welcoming and supportive environment has ‘changed [his] life dramatically’. Course leader Linda Douglas talks about the importance of finding a ‘safe space’ where people can focus on their strengths and find out what works for them.
You can find out more about the organisations featured in this programme at:
* Kirsty Henderson, Information and Communications Officer, LCIL
* Jacqueline Todd, service user and volunteer, LCIL
* Linda Douglas, lifestyle management course leader, Thistle Foundation
* John Cunningham, member, Thistle Foundation
* Margaret Hendry, volunteer and member, Thistle Foundation
Airing Pain Programme 61: Deciding Together.
How shared decision making works in practice, plus, making IT work for people in pain and healthcare professionals.
In this edition of Airing Pain we hear about how people in pain can take an active role in their care through shared decision making and technological tools.
‘Being collaborative is fundamental’ for managing pain, says Dave Tomson, a GP working on the MAGIC Programme (Making good decisions in collaboration). He speaks to Producer Paul Evans at the British Pain Society’s (BPS) Annual Scientific Meeting in Manchester about the advantages and challenges in developing an approach to medicine where decisions are made by doctors and patients together.
Technology can play a transformative role in empowering people in pain, but there are also pitfalls to be avoided. Jason Davies discusses the pros and cons of ‘telemedicine’ as a pain specialist working in the remote Argyll region of north western Scotland. Other members of the BPS Special Interest Group on Information and Communication Technology discuss the things patients and doctors should be looking out for when using online resources and the cultural change needed to make technology work – people in pain empowered to take responsibility for their pain.
* Dr Dave Tomson, GP
* Meherzin Das, Clinical Lead, Dorset Pain Management Unit and Chair of the British Pain Society’s Information and Communication Technology Special Interest Group
* John Worth, Founder and CEO of Know Your Own Health
* David Barrett, Member of the British Pain Society’s Information and Communication Technology Special Interest Group
* Dr Jason Davies, Consultant Anaesthetist, Lorn & Islands Hospital, Oban and Clinical Lead, Argyle Pain Service
Airing Pain Programme 60: Young Carers II.
How pain affects the relationship between adults and young carers and tips from a family therapist.
In the second of our two programmes focusing on young carers for people in pain, we hear about the effect of pain on relationships between parents and children.
Family therapist Liz Forbat explains how pain can disrupt transitions from childhood to independent adulthood, especially during those difficult teenage years. She discusses with presenter Paul Evan’s his ‘martyrdom’ approach to managing chronic pain – he recalls keeping his children at a distance from it – and the dangers of building barriers between family members in a bid to protect them from the effects of the pain.
We hear the young person’s perspective from Kim Radtke, who grew up with a father often made irritable and emotionally unavailable by his ankylosing spondylitis. The situation was exacerbated, Kim says, because she and her brother did not fully understand the condition and were therefore unable to empathise and communicate with their father about it. Only as an adult has she been able to make the step – so important, according to Liz Forbat – of separating the pain from the person.
To find a qualified family therapist or for more information visit the UK Council for Psychotherapy website: www.psychotherapy.org.uk
This edition has been funded by the City of Edinburgh Council and NHS Lothian’s Self-directed Support Innovation Fund.
* Kim Radtke
* Liz Forbat, Family therapist and Reader in Cancer and Palliative Care, University of Stirling
Airing Pain Programme 59: Young Carers.
Lost childhood, financial burden, emotional turmoil and guilt – these are some of the challenges facing young people who care for people in pain on top of the caring itself. They’re often left feeling invisible, going unrecognised and unsupported for years.
In the first of two programmes putting young carers centre stage, Paul Evans talks to a family about how pain has affected their lives. Erin McGuigan was hospitalised after developing debilitating pain in her limbs and now uses wheelchair and crutches. She explains how her condition has affected her brother and sisters. Her sister, Donna, talks movingly of her feelings of powerlessness, how she has encouraged Erin, and the need to keep listening and understanding.
Terri Smith a Member of the Scottish Youth Parliament (MSYP), explains why and how she is campaigning to improve the situation for young carers. Hours of freely-given care saves the Scottish Government £1.4 billion a year, but often leaves young people struggling to stay in education and financially insecure.
* Erin McGuigan
* Donna McGuigan, young carer
* Lorna McGuigan, Erin’s mother
* Terri Smith, MSYP for Edinburgh and Northern Leith
Airing Pain Programme 58: The pain toolkit.
You have to learn to live with it.’ Pete Moore’s GP told him after running out of treatment options for chronic pain. From his own experiences of learning how to live with pain, Pete Moore developed the Pain Toolkit (first a leaflet and now a multimedia web resource) to help kick-start other people’s efforts in self-management.
Producer Paul Evans caught up with Pete at the British Pain Society’s Manchester meeting for an in-depth introduction to the Pain Toolkit. Rather than relying on an exclusively medical model of endless prescriptions, the Toolkit represents an educational approach giving people strategies for self-management. It’s an approach that goes beyond just treating the pain and looks at mood, sleep, exercise and relationships.
Pete describes how the Pain Toolkit uses images and humour to make self-management messages – gathering a supportive team of healthcare professionals, pacing and relaxation – hit home and the ways in which technology can help get the message out there.
* Pete Moore, Creator of the Pain Toolkit
Airing Pain Programme 57:Self management psychology and physio terrorists.
‘Pain medicine isn’t good at dealing with the effect of pain on the person’, says Jonathan Bannister, head of the multidisciplinary pain team at Ninewells Hospital, Dundee. Paul Evans visits the clinic where Mr Bannister and some of his colleagues talk about how they care for people in pain.
We hear about the difficulties of getting a referral and how pain specialists can help GPs add pain management to their armamentarium, or doctors’ toolkit. Physiotherapist Lynn Sheridan describes how she has to win the trust of patients scared of visits to the “physio-terrorist” after encounters with the vigorous methods of traditional physiotherapy. Her more gentle approach focuses on regaining function and helping people do more without flare-ups.
Helping people distinguish between their thoughts and the truth is one of the key aims of Clinical Psychologist, Dr Jonathan Todman. He explains why mental health is very often affected by chronic pain and how pain affects people with mental health problems.
* Jonathan Bannister, Consultant in Anaesthesia and Pain Management, Ninewells Hospital, Dundee
* Lynn Sheridan, Physiotherapist, Ninewells Hospital, Dundee
* Jonathan Todman, Clinical Psychologist, Ninewells Hospital, Dundee
Airing Pain Programme 56:Images an perception.
If only pain were visible… Deborah Padfield talks to Presenter Paul Evans about her project collaborating with people with pain to produce works of art that represent their experiences. Her photographs are co-creations, using objects and ideas brought to the studio by the orofacial pain patients from University College Hospitals, London.
The art produced not only provides a voice for individuals who may have felt their experiences marginalised by the medical establishment and wider society, but is also part of a study aimed at finding better ways for people to communicate their pain. Images created by Padfield – from a clenched fist to flying sparks – are now being trialled by patients not part of the project as visual prompts in ordinary medical consultations.
‘Pain is a memory’, says Dr Rajesh Munglani, explaining how the way we feel pain is affected by past experiences and our emotions. From the phantom limb pain of a soldier wounded in action to an injured motorist caught up in a bitter legal struggle for compensation, the context of chronic pain can be crucial in helping or hindering people from moving on. The different ways people perceive their pain also means, Dr Munglani argues, that perhaps pacing is not right for everyone, all of the time – a big night out might mean a few days in bed for a teenager with pain, but provide an important boost to their confidence.
* Dr Deborah Padfield, Artist and Researcher, Slade School of Art, University College London
* Dr Rajesh Munglani, Consultant in Pain Medicine, West Suffolk Hospital, Bury St Edmunds
Airing Pain Programme 55:More power to you!.
In episode 55 we hear about two very different ways of giving people in pain the knowledge and power to help themselves.
Will we soon be able to get a prescription of yoga on the NHS? Christine Johnson speaks to yoga teacher Anna Semlyen about a study that shows yoga can be an effective and cost-effective treatment for chronic low back pain. Semlyen, who helped design the programme used by the research trial, recalls how she has seen people get back into gardening or extreme sports after taking up yoga. The research study found a similar effect among the group of patients using yoga: reduced levels of disability and fewer days off work compared to the control group. Not only is this a low-tech and cheap treatment, but it’s also empowering, argues Semlyen, as it lets people ‘be their own healers’.
‘How are you?’ Three little words often dreaded by people in pain. Gareth Parsons explains to Paul Evans why these simple social rituals can be so difficult for people in pain and how social interactions can instead be made empowering. Parsons’ work on participatory action research gets people in pain together to recognise the negative attitudes or oppression experienced in daily life and find ways to help themselves. The real experts on pain are not the clinicians of researchers, but the people who live with it every day, he argues.
* Anna Semlyen, yoga teacher, British Wheel of Yoga
* Gareth Parsons, Lecturer, University of South Wales
You can find out more about using yoga to help with lower back pain and buy the yoga programme book and accompanying CD from the project’s website: Yogaforbacks.co.uk.
Airing Pain Programme 54: Opioids memories and prison healthcare.
Paul Evans talks to Dr Cathy Stannard, a Consultant in Pain Medicine at Frenchay Hospital in Bristol, who outlines the use and misuse of opioids in chronic pain management. She points out that whilst opioids are a useful analgesic for some people, they can have a detrimental effect on others due to their strong side effects. She emphasises the need for healthcare professionals to be aware of how to use opioids effectively as a pain management resource.
Paul also meets Dr Rajesh Munglani, a Consultant in Pain Medicine in Cambridge, who has carried out research into the relationship between pain and memory. He describes chronic pain as a circuit that can be triggered by seemingly small events or memories and highlights the importance of context and memories on pain. He explains that medical or psychological intervention is needed to disrupt the circuit of pain.
Then Paul speaks to Dr Cathy Stannard and Dr Ian Brew, a prison GP, about healthcare within prisons. Stannard reveals some problems in this area, saying that some medicines are a tradable commodity in prisons and that often prisoners’ account of pain are treated with mistrust. She reports that the situation is improving, as the healthcare needs assessment that prisoners receive when they arrive in prison now includes a section on pain, alongside the original sections on substance misuse and psychiatric disorders. Dr Ian Brew emphasises that prisoners deserve to receive equal healthcare to those outside of prison and says evidence suggests that good healthcare, alongside other rehabilitation initiatives in prisons, can reduce the rate of re-offending.
• Dr Cathy Stannard, Consultant in Pain Medicine at Frenchay Hospital in Bristol and chair of consensus group and editor of British Pain Society’s Guidelines on Opioids for Persistent Pain: Good Practise
• Dr Rajesh Munglani, Consultant in Pain Medicine in Cambridge and was a lecturer in the University of Cambridge researching mechanisms of chronic pain
• Dr Iain Brew, GP working in prisons
Airing Pain Programme 53: Headaches, Chilli pepper patches and the placebo effect.
Paul Evans meets Dr Paul Davies, a Consultant Neurologist from Northampton General Hospital, who explains that whilst most headaches are benign and can be self-medicated, some headaches – those that are frequent and very painful – require medical attention. He outlines the different types of headaches, including migraines, tension headaches and cluster headaches, and says that each kind requires a specific treatment. Dr Davies admits that GPs have a long way to go in diagnosing and treating chronic headaches effectively.
Dr Mick Serpell, a Consultant in Anaesthesia and Pain Medicine in Glasgow, gives us an introduction to topical medicine – medication applied to the surface of the body rather than introduced into it. The medication is applied to the painful area and the drug has a painkilling effect at a local level. Topical medicines can take the form of a cream, a gel or a plaster impregnated with a drug. We hear about two types which are usually used to treat neuropathic conditions – lidocaine and a chilli pepper plaster. One benefit of topical treatments is that they have very few side-effects and can usually be used alongside other analgesics.
Finally, Paul meets Michael Lee, a Research Associate at Oxford Centre for the Functional Magnetic Resonance Imaging of the Brain, who carries out extensive research into placebos ¬– treatments given purely for psychological effect. In defiance of those sceptical of the placebo effect, Lee’s brain imaging research shows that placebo medications can have a visible effect on the way that pain is transmitted to the brain. Lee also highlights the importance of psychological context in treatment, saying that what a patient believes about their doctor, their medication and the therapeutic process as a whole affects their response to medication.
• Dr Paul Davies – Consultant Neurologist at Northampton General Hospital and runs headache clinic at John Radcliffe Hospital in Oxford
• Dr Mick Serpell – Consultant in Anaesthesia and Pain Medicine in Glasgow
• Michael Lee – Research Associate at Oxford Centre for the Functional Magnetic Resonance Imaging of the Brain
Airing Pain Programme 52: Better care for people in pain
How to ensure people in pain get the best treatment: a new guideline for chronic pain in Scotland.
At the launch of a new guideline on treatment of chronic pain in Scotland, Paul Evans speaks to patients and healthcare professionals about how to raise awareness and improve care.
Marion Beatson and Susan Scott describe the struggles they both endured in trying to get appropriate care after developing chronic pain. They both hope that the new guideline will help people in pain get the support they need in future by setting out clearly the treatment they can expect to receive. Marion’s daughter Chloe talks movingly about how her own life and her relationship with her mum have been affected by Marion’s chronic pain.
Norma Turvill believes the guidelines could raise awareness of the under-recognised issue of chronic pain which is still not understood by some healthcare professionals and Steve Gilbert explains how they could help transform treatment in primary care. Paul Cameron discusses the guideline’s advice on exercise and the different ways in which patients can access exercise therapies.
Airing Pain Programme 51: At the community pain management programme
Practical insights and life-changing experiences at a community pain management course.
In the previous edition of Airing Pain we explored the pros and cons of taking pain management into the community. This time Paul Evans travels to Powys – the most sparsely populated county in Wales – to see how community pain management works in practice at the programme run by Ystradgynlais Community Hospital.
Course leader Gethin Kemp explains that the community approach makes pain management techniques availAble to people who are unAble to undertake a residential programme. For people whose lives may have been completely taken over by pain the course offers strategies for coping with the emotional fallout, increasing their activity levels through pacing and getting a good night’s sleep.
Participants on the programme Toni and Nia explain what they hope to get from it. We hear from them again at the end of the 8-week course when they reflect on the progress they have made – from learning to communicate more effectively to rediscovering a love of painting.
Airing Pain Programme 50: Pain services in the community
GPs surgery, telephone or pain clinic: where should pain management take place?
‘Good pain services, based in the community will make a huge difference to the lives of individuals and the NHS’, says Sue Beckman, speaking on behalf of the NHS’s Delivery and Support Unit at the Welsh Pain Society Annual Scientific Meeting. But what does moving pain services into the community mean?
Beckman, together with pain specialists Mark Ritchie, Mark Turtle and Rob Davies debate the key issue of where pain management should take place.
General Practitioners (GPs) are often those closest to ‘the community’ – they often see patients over the course of years, but limited training in chronic pain and lack of time in appointments pose problems. The panellists also discuss the challenges of bringing services closer to the isolated communities of rural Wales while ensuring that as many people as possible can access pain services by public transport. Finally, could moving services away from the pain clinic ‘demedicalise’ chronic pain by causing healthcare professionals and their patients ‘to think outside the box’?
This edition has been funded by the Big Lottery Fund’s Awards for All Programme in Wales.
Airing Pain Programme 49: The Impact of Pain on Society
Talking to representatives from a variety of pain organisations, including the Trigeminal Neuralgia Association, about the wide-reaching impact that pain has on society.
Christine Johnston heads to Brussels to investigate the impact that pain has on society as a whole at the Societal Impact of Pain lobby group’s fourth annual event. She talks to Neil Betteridge of Neil Betteridge Associates which promotes a holistic approach to pain management. Betteridge explains that early intervention is beneficial not only for the patient but also for employers, as it leads to faster, more effective treatment and less time spent outside of the workplace. Jamie O’Hara, who works with Adelphi Real World and the Haemophilia Society, discusses the results of a survey carried out about the effect pain has on society, which found that those living with chronic pain and their carers experience disproportionately high levels of unemployment.
Christine also speaks to Jacqui Lyttle, an Independent Commissioning Consultant, who criticises the current care given to those with chronic pain conditions, citing wrong diagnoses and the subsequent delays in accessing effective treatment as the main issues. She explains that pain management costs more when it’s not managed effectively than when it is, both in terms of money and in working days lost through illness.
Paul Evans then meets Jillie Abbott, the Projects Officer of Trigeminal Neuralgia Association, who describes the organisation’s attempts to raise awareness of the little-understood condition within the healthcare profession, citing the high frequency of misdiagnoses and ineffective treatment as the motivation for this educational focus. She also shares some coping mechanisms that can help those living with Trigeminal Neuralgia and emphasises the need for better communication between people living with the condition and healthcare professionals.
This edition has been funded by a grant from the Scottish Government
Airing Pain Programme 48: Nursing beyond drugs
How nurses can use relaxation therapy, massage, acupuncture and empathy to help people manage their pain.
‘Imagine how it feels like if you’re in pain and people won’t help you.’ Like other healthcare professionals, nurses can sometimes struggle to understand the perspective of people living with pain. At a training day for student nurses devoted to chronic pain, Gareth Parsons impresses on his audience the importance of believing the patient and delivers some uncomfortAble truths based on his research about the frustrations people with pain often have of healthcare professionals: ‘you are the problem!’
Equipped with the training they receive, hopefully this group of nurses will instead be part of the solution. The first step is understanding that chronic pain is a condition in its own right – this way the nurses will be aware of the problems of treating chronic pain as if it were acute (for example, excessive use of opioids) and be Able to help tackle anxiety and fear.
With a better sense of the nature of chronic pain, nurses will be less likely to ‘throw drugs’ at the problem, Owena Simpson says. She guides the student nurses in a session of relaxation therapy, while Maria Parry teaches the students basic massage techniques and recalls her own experiences of how a patient of hers was Able to overcome insomnia thanks to massage therapy. Gareth Parsons finishes the session with an acupuncture lesson and explains why this treatment may be more effective for some patients than for others.
This edition has been funded by the Big Lottery Fund’s Awards for All Programme in Wales.
Airing Pain Programme 47: The power of the mind
Investigating ancient and futuristic techniques to reduce pain using the power of the mind: from mindfulness to neuro-engineering.Investigating ancient and futuristic techniques to reduce pain using the power of the mind: from mindfulness to neuro-engineering.
In this edition of Airing Pain Paul Evans explores the possibility of controlling pain through techniques that focus on the brain and the mind.
Paul meets Aleksandra Vuckovic, a rehabilitation engineer at the Southern General Hospital in Glasgow, who is conducting research into the use of neuro-engineering techniques to control chronic pain in those with injuries to the central nervous system. She explains that neuro-engineering works through patients training themselves to identify the part of their brain that controls their pain and then reducing it using brain waves. One of her patients, Andy Nisbet, shares his own experience of the technique and discusses the potential for future advancements in this method.
Paul also speaks to Vidyamala Burch, founder and director of Manchester-based organisation Breathworks, which offers training for healthcare professionals and individuals in mindfulness-based approaches to chronic pain. She introduces us to the mindfulness technique, which fuses modern medicine with age-old eastern practices, and talks about the advantages of becoming aware of emotional and physical states as they occur. Burch explains that mindfulness allows people to identify the behaviour patterns related to their suffering and to make a conscious choice about that behaviour. This technique impacts on all areas of a person’s life: allowing them to reduce stress, maintain good relationships with those around them and increase their self-esteem
This edition has been funded by a grant from the Scottish Government
Programme 46: Post-herpetic neuralgia and migraine
Busting some myths about shingles and post-herpetic neuralgia, and the dos and don’ts of managing migraines.
Migraine is not ‘just a headache’ – it’s a disabling condition that can cause major disruption to work and personal life. So says David Watson, a GP who specialises in treating patients with chronic headaches. He explains that the ‘migraine brain’ is extra sensitive to changes in the environment, how small changes to lifestyle can help people to minimise episodes and how to avoid the pitfall of medication overuse. Dr Watson also gives helpful advice on how patients with migraine can best prepare for a visit to their GP.
Post-herpetic neuralgia is another frequently misunderstood condition with myths about its contagiousness and relationship to chickenpox and shingles causing confusion. Marian Nicholson of the Shingles Support Society clears up these misunderstandings and emphasises the importance of preventative treatments. We also hear about a new vaccine which should help to protect older people who are most at risk of developing post-herpetic neuralgia after shingles.
This programme was funded by the Scottish Government.
Programme 45:Helping us to help ourselves
Empowering patients from GP’s surgery to Pain Management Programme.
Healthcare professionals and people with pain need to work together to manage chronic pain conditions, but how is this achieved in practice? Paul Evans speaks to a GP, physiotherapist and clinical psychologist to find out more. We begin by hearing from GP and pain specialist Neville McMullan about his work with Ulster Hospital to improve access to pain management programmes by bringing them out of the hospital into the community and giving people the skills to manage their own pain.
Dr McMullan stresses the importance of getting patients out of a cycle of inactivity and physical deterioration. This is where physiotherapy comes in as we hear from Ashley Montgomery, a physiotherapist at Ulster Hospital. Montgomery describes how understanding the reality of chronic pain, being believed and getting the balance between rest and activity right can give people confidence to take the first steps towards self-managing their condition.
Consultant Clinical Psychologist Jenny Maguire explains how acceptance and commitment therapy (ACT) builds upon CBT (cognitive behavioural therapy) to help people adjust to living with pain as a long term condition.
This programme was funded by the Big Lottery Fund’s Awards For All programme in Northern Ireland.
Programme 44:Pain management at both extremes of life
Pain experienced by the very young and very old and the similar issues arising when dealing with these very different types of patient.
In this edition of Airing Pain, Paul Evans speaks to experts from Ireland and London about the similarities, differences and problems in treating pain in infants and the elderly. Maria Fitzgerald, professor of developmental neurobiology at University College London, mentions the outdated theory that babies do not experience pain and how this misconception has been disproved. She raises the issue of communication, perhaps the biggest problem with babies and the elderly (particularly those with dementia) if they cannot communicate about their pain effectively, their pain often cannot be adequately addressed. She also discusses the scientific research she and her team are carrying out as well as the importance of treating pain at an early age.
This edition has been funded by the Big Lottery Fund’s Awards for All Programme in Northern Ireland
Programme 43: Patient involvement and pain management
Involving pain patients in health services and learning how to self-manage pain whilst working.
In this edition of Airing Pain, Paul Evans travels to Northern Ireland to visit a patients’ organisation, the Patient and Client Council. The Council provides patients with an independent voice in the health and social care system by involving those who live with chronic pain in the decision-making process and supporting patients who wish to make a complaint, with the overall aim of improving patient services in Northern Ireland.
Louise Skelly, Head of Operations at the Council, describes her organisation’s work promoting information and advice across the healthcare system and using patients’ experience, suggestions and stories to raise awareness of chronic pain. She highlights some of the advances and improvements that the Council has brought about in recent years.
This programme was funded by the Big Lottery Fund’s Awards For All programme in Northern Ireland.
Programme 42: Endometriosis and Support Groups
Learning to manage endometriosis and how support groups can help.
Paul Evans visits an endometriosis support group in Belfast, and interviews founder Anna Jaminson and guest speaker gynaecologist Dr David Hunter.
Dr Hunter discusses the research about how endometriosis develops and people living with the condition describe their experience in depth, including the impact upon personal relationships with family and friends. Members of the support group talk of their immense relief at finding people with similar stories to share
This programme was funded by the Big Lottery Fund’s Awards For All programme in Northern Ireland.
Programme 41: Inside A Multidisciplinary Pain Team
A look at a multidisciplinary pain team, which utilises experts from different disciplines to formulate management strategies for patients.
In this edition of Airing Pain, Paul Evans travels to Northern Ireland to meet a multidisciplinary pain team at Craigavon Area Hopsital, including doctors, psychologists and physiotherapists, led by Dr Paul McConaghy. We find out how cases of chronic pain are discussed by experts of different disciplines and how management strategies are then put into place. The importance of educating GPs about chronic pain is discussed, as well as the need for empathic and respectful professionals.
This edition was funded by the Big Lottery Fund’s Awards For All programme in Northern Ireland
Programme 40: Children In Pain
The pain management needs of children and young people and the impact of their pain on family life.
This programme was funded by Pain Concern’s supporters and friends.
This programme focuses on pain in children and young people, including the different needs they have and the unique challenges that their care presents compared to adult patients.
Paul Evans and Christine Johnston talk to experts at children’s hospitals in Edinburgh and Glasgow about the strategies they use for helping young people to cope with pain. Although there are obvious differences between treating an infant and a teenager, the aim is always to enAble young people in pain to live the fullest lives they can, while minimising the effects on their education and socialisation.
We also consider the wider impact of a young person in pain upon the family unit and we hear from Sam Mason about how chronic pain has impacted his life at home and at school.
Programme 39: National Pain Audit
The state of pain services in England and Wales: the National Pain Audit’s findings revealed.
At the launch of the National Pain Audit at the Science Museum in London, Paul Evans talks to people who took a leading role in its development about the need for an audit and what their findings suggest needs to be done in the future.
For the first time, the Audit will make availAble to patients and healthcare professionals detailed information on local pain management services. Richard Langford and Cathy Price of the British Pain Society discuss the reports findings, including the need for more pain clinics to adopt the minimum international standard for interdisciplinary services. This would enAble them to take a biopsychosocial approach to pain management, which, as Richard Langford explains, can make a crucial difference to patients. Cathy Price also discusses how pain clinics could do more to help patients remain in or get back into employment.
We also hear from Christine Hughes and Jean Gaffin, who have both been involved in the campaign for better pain services, about the problem of inconsistent service provision and the need to work towards a national standard.
For more information on the National Pain Audit and to find out about your local pain services visit: www.nationalpainaudit.org
Programme 38: Can your pharmacy help?
Finding out about the role of the pharmacist and how service users can get the most from them.
Paul Evans speaks to Professor David Taylor from the University College London School of Pharmacy about the perceptions and reality of the pharmacist’s role and their skills. Pharmacist Emma Hinks talks about how pharmacists can help you with services like the Medicines Use Review (MUR), which looks at how you are getting on with your medicines. We also hear about the increasing emphasis on pharmacists communicating with their service users, working together with other services and recommending non-pharmaceutical forms of treatment.
Programme 37: What is Pain?
Looking at the fundamental principles of what pain is.
In this programme Professor Lorimer Moseley, Professor of Clinical Neurosciences and Chair in Physiotherapy at the University of South Australia, explains the relationship between chronic pain and the brain, incorporating personal stories which illuminate this relationship. The importance of providing good explanations of pain to those living with it is also looked at. According to Moseley, evidence shows that learning about your chronic pain can lead to a reduction in the pain you experience.
Programme 36: Societal Impact of Pain
Pain Concern sent Janet Graves to Copenhagen to cover the third Societal Impact of Pain conference, organised by EFIC, which was attended by over 400 delegates from 35 European countries in May 2012.
The show reveals that across Europe access to pain services can be patchy and limited. For Professor Hans Kress, president of EFIC, part of the problem is that pain isn’t recognised as a disease. Justin Marasi from Italy points to progress at the political level in his country, but concedes that there is work to be done.
So what would a good pain service look like? Dr Judith Hooper highlights innovations made in her council of Kirklees and we also hear from people living with pain about the issues they have faced, including the importance of being believed.
This edition of Airing Pain was funded by Grünenthal.
Programme 35: The Northern Ireland Pain Summit
Paul Evans presents a special edition of Airing Pain, covering the 2012 Northern Ireland Pain Summit, organised by the Pain Alliance for Northern Ireland. At the summit, Janet Graves interviewed representatives from government, the voluntary sector, health professionals, and of course patients. We hear from amongst others, Northern Ireland’s Chief Medical Officer Dr Michael McBride, chair of the Pain Alliance for Northern Ireland Dr Pamela Bell, and Kate Fleck, national Director for Arthritis Care in Northern Ireland. Dr William Campbell, consultant in anaesthesia and pain medicine at Ulster Hospital, Dundonald, Belfast, speaks on the provision of pain services across Northern Ireland. Patients attending the summit give us their stories and say what brought them there. Tania Kennedy, director of Business in the Community, sets out her thoughts on how the world of business can better take account of chronic pain.Pamela Bell and Kate Fleck conclude with their thoughts on the ‘road map’ for action following on from the pain summit.
This edition of Airing Pain was funded by Grünenthal.
Programme 34: Ankylosing Spondylitis & The Patient Perspective
In programme 34 the form of arthritis affecting the spine, known as ankylosing spondylitis (AS), is discussed. Paul Evans speaks to Iain MacDonald and Tom Downie of the Edinburgh branch of the National Ankylosing Spondylitis Society, about their role in supporting people with the condition. Paul also talks to Janet Johnson of PSALV about psoriasis, a condition linked to AS.
Sue Clayton, who has been involved with Pain Concern for many years, spoke at the 2011 Annual Scientific Meeting of the British Pain Society. She gave a patient perspective to healthcare professionals at the meeting. At this year’s meeting, Paul Evans spoke to Emma Briggs on the topic of improving the pain education of healthcare professionals.
‘This show was funded by Pain Concern’s supporters and friends.
Programme 33: Gender and Communication
In Programme 33 the link between gender and pain is investigated. Paul Evans speaks to Dr Barry Sessle, who specialises in orofacial pain, on the subject. Their conversation reveals key differences in how both sexes can experience and tolerate pain.
Clinical psychologist Dr Amanda Williams explains how attitudes to pelvic pain are determined by gender. Men often experience discomfort in discussing what is perceived as a ‘woman’s problem’. Communication can often be life-saving, and the importance of opening up, and in turn receiving the necessary support, is emphasised.
The importance of having support in dealing with pain is further exemplified by Phil and Sue O’Brien. Phil lives with cluster headaches, and the couple reveal how they have learnt to manage his pain together.
This edition has been enAbled by an educational grant from Pfizer Ltd
Programme 32: Pain Management Programmes
Programme 32 is based at the Glasgow Pain Management programme, which is run over twelve weeks. In order to respond directly to questions received by Pain Concern, Paul Evans speaks to both those who run the programmes, and those participating.
The programme’s clinical lead, consultant clinical psychologist Martin Dunbar, discusses the main aims and objectives of the values and acceptance based programme. In turn those partaking reveal their own experiences: how they came to be referred, and the impact it has had on their daily life.
To provide further insight into how pain management programmes operate, Lynn Watson, the nurse at the Glasgow Pain Management programme, explains what her role entails and shares advice on how to make the most out of medical appointments. Vera Elders, assistant psychologist, clarifies how mindfulness can be of use to those who live with pain.
All involved illustrate the far-reaching benefits of taking part, and emphasise the importance of putting yourself, and not your pain, in control.
This show was funded by Pain Concern’s supporters and friends.
Show 31: Brain Imaging: looking into your pain
Show 31 highlights research into the neurological processes that will help with the understanding of pain.
Paul Harvard Evans talks to Professor Karen Davies from University of Toronto and Dr Yves De Koninck from the Quebec Pain Research Network in Canada. They discuss the benefits that research into brain imaging and pain networks can bring to pain prevention and treatment.
De Koninck adds, which will only fuel this controversial argument, that chronic pain is in fact a disease in itself. He says that people living with pain have lost their body’s ability to control the pain sensation and repress it. He also discusses the perception of pain, which Davies says emotions play a significant part in.
This show focuses on the psychology and neuroscience of pain, which may help those living with the condition understand what is happening to them.
Those interviewed include:
Professor Karen Davies, Neuroscience at University of Toronto, Canada.
Dr Yves De Koninck, Director of the Quebec Pain Research network in Canada
Programme 30: Successful Research and Chronic Conditions
In Programme 30 we learn about the benefits of involving patients experiences in the research process. Producer and presenter Paul Harvard Evans talks to members of SUCCESS, a group which works with researchers to ensure more effective research findings, and researchers from Swansea University.
SUCCESS – Service Users with Chronic Conditions Enabling Sensible Solutions is a group of patients, carers and former patients with experience of chronic conditions. They work towards making research better and in turn contributing to policy change within the health service.
David Rae, from Swansea University, adds that there is a new tradition of involving patients in the research process. This involvement, rather than participation in the research itself, can include identifying research needs; helping design the research; applying for funding; and recruiting participants.
Mostyn Toghill, who lives with type one diabetes, highlights the need for patient involvement and the significance of groups like SUCCESS. For instance, discussing personal experiences with service providers, can highlight the need for research into the uniformity off services throughout different health boards. By working with groups like SUCCESS, it is clear that research will become much more relevant and results will become increasingly reliAble and valid. You can contact SUCCESS at email@example.com
Angela Evans – Research officer at Swansea University
David Rae – College of Human & Health Science at Swansea University
Members of SUCCESS including Mostyn Togill, John Flynn, Angela Evans & Jill Edge. This show was funded by Pain Concerns supporters and friends. Pain Concern is a UK wide charity providing information and support for people
Programme 29 Fibromyalgia.
Paul Evans looks at the chronic condition Fibromyalgia, speaking with Professor Ernest Choy.We also meet Lucy and discover how the condition affects her. Professor Dwight Moulin considers treatment availAble and the future for people suffering from this condition.
For more information on Fibromyalgia go to http://www.ukfibromyalgia.com/
This show was funded by Pain Concerns supporters and friends. Pain Concern is a UK wide charity providing information and support for people who live with pain and those who care for and about them www.painconcern.org.uk
Programme 28 Challenging Pain.
Utilising self-management changes the role of both those with chronic pain, and their health professionals. It is explained how the relationship can change, and why it is essential that self-management is considered as part of the treatment process, and not merely as an extra.
- Rachel Gondwe, Training Services coordinator with Arthritis Care
- Jill Davies, workshop leader at Challenging Pain
- Herbie Roley, workshop leader at Challenging Pain
- Kirstine MacDowall, volunteer tutor at Arthritis Care
- Toyin Onasanya, Arthritis Cares South England training administrator
For more information on Challenging Pain go to www.arthritiscare.org.uk
This show was funded by Pain Concerns supporters and friends.
Airing Pain : Programme 27 Arthritis – Challenging Perceptions: 21st February 2012
Arthritis Care, UK’s largest charity supporting the 10 million people with arthritis, provides greater insight into the condition and clears up some of the many misconceptions.
David Walsh from Arthritis Research UK Pain Centre and experts from Arthritis Care – including their helpline manager Jo Cumming – provide us with useful advice on how to adjust so that living with chronic pain is more bearable.
Arthritis, inflammation of the joints, is thought to be a condition which affects the elderly. However, the high prevalence of arthritis amongst older generations may arise simply because it is a condition with no cure. It is a long term condition and can affect people of all ages – even babies.
Kate Llewelyn (Arthritis Care’s Head of Information Services) who developed arthritis at a young age, tells us about their new booklet for parents. It provides strategies on how to adapt family life when a child is diagnosed with a form of the disease. Kate also discusses people’s negative attitudes and ignorance towards those living with an invisible illness, for instance: her right to a disAbled parking space even though she looks perfectly healthy.
Lexy Baxter (24) shares her experience of living with arthritis at a young age and the steps she takes to prevent her condition taking over her life.
Minal Smith (editor of Arthritis News) also discusses how Arthritis Care can provide information and solutions for every day difficulties such as where to find clothes with Velcro.
For more information go to www.arthritiscare.org.uk.
This show was funded by Pain Concern’s friends and supporters.
Airing Pain : Programme 26 : 7th February 2012
Programme 26 – Following the Patient Pain Pathway The British Pain Society maps out a simpler route for pain patients. Airing Pain hears from both specialists and those living with chronic pain about how the patient-doctor relationship can be improved; and in turn how treatment of the condition can be more effective. We hear from Jean Smith, who lives with chronic backpain and depression, on how a breakdown in communication with GPs can lead to a lack in confidence and a feeling of worthlessness. Now, thanks to the British Pain Society and the newly developed ‘Pain Patient Pathways’, the patient voice is being taken into greater consideration. Douglas Smallwood, Chair of the BPS Patient Liaison Committee, discusses how ‘special interest groups’ work towards including the patient perspective, empowering individuals by giving them the information they need to question GPs. The show also discusses the benefits of a multi-disciplinary approach and self management. Those interviewed include: Jean Smith – who lives with chronic backpain and depression Douglas Smallwood – Chair of the BPS Patient Liason Committee Martin Johnston – Royal College of General Practioners’ UK Champion in chronic pain and on the executive committee for the Pain Patient Pathways. Mark Ritchie – GP based in Swansea with a special interest in pain management. Kevin Geddes – Director of Self Management at Long Term Conditions Alliance Scotland (LTCAS) This show was funded by Pain Concern’s supporters and friends.
Airing Pain : Programme 25 : 24th January 2012
Programme 25: A Heads Up on Migraines In what is the Global Year Against Headache, Airing Pain discusses the different types of chronic headache and provides advice on how to self-manage the condition. Presenter Paul Harvard Evans talks to several specialists including Dr Giles Erlington from the National Migraine Centre, who says although there is no cure for migraines, the key is to managing symptoms. This begins with correct diagnosis. By learning to recognise triggers such as sugar intake; and managing your lifestyle accordingly i.e., diet and sleep patterns. Earrington also highlights that for those prone to migraines, it is important to have a sense of routine – the body doesn’t like surprises. We also hear from those living with chronic headaches who share their experiences; and Heather Sim, who tells us the steps to take to get referred to a migraine clinic. Interviewees including patients and pain specialists: Giles Erlington, Medical Director of The National Migraine Centre Heather Sim, Chief Executive of The National Migraine Centre Patients including: Keri Bucholz, Emma Williams and Chris Whitehouse. This show was sponsered by Pain Concern’s friends and supporters, for more information see our Just Giving page.
Airing Pain : Programme 24 : 10th January 2012
In Programme 24Paul Evans explains the Alexander Technique, and the benefits it offers to those who live with chronic pain. An interesting perspective is provided by Daphne Wood, a qualified teacher of the Shaw Method which applies the principles of Alexander Technique to swimming. This interview is conducted in a swimming pool, and it is highlighted how the ideas behind the Alexander Technique can be used to effectively combat and manage pain in everyday life. Also in the show, physiotherapist Paul Cameron takes part in a Q&A wherein patient questions received by Pain Concern are answered. Interviews:
Daphne Wood of Pain and Able swimming.
Paul Cameron, lead physiotherapist at Cameron Physiotherapy, a Pain Specialist Physiotherapist with the NHS Fife Pain Service, and a PhD Researcher with the Centre of Academic Primary Care, Aberdeen University This show was funded by Pain Concern’s supporters and friends, and an educational grant from Grunental.
Airing Pain : Programme 23 : 1st January 2012
In show 23 Paul Evans investigates limb pain, covering Complex Regional Pain Syndrome (CRPS), Limb pain following injury and surgery and phantom limb pain. He is joined by Sunni Boschoff who suffered a crushing injury to her hand and now has CRPS. Also appearing are Dr Bill Mc Rae and Dr Joan Hester who discuss both drug and imaging therapies. This show was funded by a grant from Big Lottery Fund Awards for All, Scotland and an educational grant from Pfizer LTD.
Airing Pain : Programme 22 : 13th December 2011
In show 22 Paul Harvard Evans highlights the role of body language and facial expressions in understanding those in pain. When other forms of expression are limited, due to learning difficulties for example, this assumes even greater importance. Evans highlights this in relation to a pilot project in East Kent, where a training pack for carers will allow them to assess what is normal behaviour for each individual and notice a change in this behaviour when they are in pain. He adds to this by discussing a recent study on the facial expressions of mice; and the role of animal models and how predictive they are in measuring human pain. Also in this show, Evans highlights the success of self help groups and the “bonding experience” individuals can share. Val Conway, lead clinician for community chronic pain services in East Kent. Jeff Moghul, Professor of Pain Studies at McGill University in Montreal, Canada. Sue Clayton, past member of BPS patient liaison, who has had neuropathic pain following surgery to relieve her back pain in the early 1980’s. This show was funded by a grant from Big Lottery Fund Awards for All, Scotland and an educational grant from Pfizer LTD.
Airing Pain : Programme 21 : 29th November 2011
In show 21 Paul Harvard Evans highlights the success of NHS Highland’s chronic pain services. Those that have a long term condition and live in remote areas of the Highlands face even greater challenges in receiving adequate treatment. This service has significantly increased the number of patients treated and allowed medical professionals to be much more efficient with their time. The show also discusses the use of opiod drugs to treat chronic pain. Evans speaks to both health professional and patients including: Jill Wilson, who lives in the Highlands and has lived with chronic pain for fifty years Jackie Milburn, clinical nurse manager for the chronic pain service at NHS Highland Dr John Macleod, consultant anaesthetist at Caithness General Hospital in Wick and Clinical Lead for the chronic pain management service. Cathy Stannard, consultant in pain medicine at Frenchay Hospital in Bristol. Marion Beatson, who has lived with chronic pain since having a work place accident eleven years ago Dr David Gillanders , clinical psychologist who shares his time between the University of Edinburgh and Lothian Chronic Pain Service This programme was funded by a grant from Big Lottery Fund Awards for All (Scotland) and by an educational grant from Pfizer Ltd.
Airing Pain : Programme 20 : 15th November 2011
Economic & Societal Impact of Inadequate Treatment of Chronic Pain In show 2 Paul Harvard Evans highlights the long-term economic and societal costs of insufficient treatment for people with chronic pain. In discussing the issue with several specialists, they find that this gap in treatment is due to inadequate services and the length of time it takes to be referred by your GP. The show also discusses how chronic pain should be acknowledged as a condition in its own right; and the human right to access pain management without discrimination. Evans talks to several specialists from across Europe including: Beverly Collet, consultant in pain medicine at the University Hospital Leicester and Chairperson of the Chronic Pain Coalition. Brian McGuire, a clinical psychologist from National University of Ireland (NUI) Galway’s pain clinic and director of the centre for pain research. Gina Plunkett, Chairperson of Chronic Pain Ireland, who lives with chronic pain. Michael Sands, Chair of Anaesthesiology, pain and palliative care at the Ruhr University and past president of the German Pain Society Judy Birch, Chief Executive of the Pelvic Pain Support Network. Mary Baker, President of the European Brain Council and European Federation of Neurological Associations. Ros Meek, Director of the Arthritis and Musculoskeletal Alliance (ARMA) Ceri Philips, Professor of Health Economics at Swansea University This show was funded by an educational grant from Grunenthal.
Airing Pain : Programme 19 : 1st November 2011
Programme 19 Looks at the impact of pain on family life and relationships. Paul Evans investigates how a family therapist can help with these relationships. The show is in the context of a two day workshop held by the Association for Family Therapy Scotland. Guests include: Dr Elaine McWilliams who uses her own experiences with pain to relate to clients. The impact of ilness on intimacy and sexual relations is examined. Jan Parker discusses the frustrations children feel when they encounter pain in the family home and the effect this can have on development. Finally Dr John Rowland from the University of Chicago discusses the benefits of a “resilience approach” – not just bouncing back but bouncing forward.
Airing Pain : Programme 18 : 24th May 2011
Programme 18 focuses on the ?Growing Old with Pain? conference held earlier this year. During which a board of medical professionals answered questions raised by patients, professionals and charitAble bodies alike. The clear message throughout is that pain is not an inevitAble part of ageing, and should not be considered a condition that must be lived with. There are ways of managing pain in the elderly, and this programme gets some personal insight into people’s own experiences in pain management. The importance of family and carers taking an active role in the management of elderly patient?s pain is highlighted, and we hear the inspirational story of Michael and Rosemary Morrison who together have rebuilt their lives around their chronic back pain. Educating people about pain is discussed, particularly the possibility of changing medical undergraduate curricula in order to educate professionals about the best treatments for pain.
Airing Pain : Programme 17 : 10th May 2011
The British Pain Society has launched a new Special Interest Group and we talk to experts at this event. We meet Dr Martin Johnson, a GP based in Yorkshire who has a long standing interest in chronic pain. He?s at the forefront of medical politics and particularly the successful campaign for pain to be made a clinical priority. Also featured, Professor Irene Tracy, director of the brain imaging unit at Oxford University, Dr Mark Porter and Dr Martin Johnson, Royal College of General Practitioners UK Clinical Champion for pain management.
Airing Pain : Programme 16 : 26th April 2011
The theme of programme 16 is “if I have rocks in my way, I shall keep them all: one day I will build a castle”. Paul Evans talks to patients and professionals at Astley Ainslie Hospital in Edinburgh to hear their uplifting approaches to pain management. The programme focuses on the way that mind and body work together, with psychologists playing as important a role as physiotherapists. It looks at how tackling negative thoughts and patterns of behaviour are as crucial as dealing with the physical aspects of pain. It investigates how local services like Lothian Chronic Pain Service empower people in pain, and help them to find strategies to give value to their lives again. Paul Evans also gets an insight into the amazing benefits of Hydrotherapy for those in pain. The message of the programme is one of heroism and hope.
Airing Pain : Programme 15 : 12th April 2011
In programme 15, Paul Evans speaks to psychologist David Craig of Glasgow, who comments on his communication skills training DVD for chronic pain proffesionals. GP Mark Ritchie explains how depression and chronic pain can be linked, and gives advice on how patients can prepare for medical consultations, using the memory aid: Ideas, Concerns, and Expectations. And finally we hear from a number of patients and how they effectively broke down any communications barriers with health professionals in order to gain the most that they can from their consultations
Airing Pain : Programme 14 : 29th March 2011
In Programme 14 Paul Evans looks at spinal cord stimulators with Dr Steve Gilbert and also complex regional pain syndrome. Sleep is a significant problem for many listeners; Professor Mark Blagrove considers this basic need. Dr. Tang explains the relationship between pain and sleep. At the end of the programme Edith Mowatt describes her experience of living and coping with nerve root pain.
Airing Pain : Programme 13 : 15th March 2011
In Programme 13, Lionel Kelleway hears some advice from Dr Steve Gilbert for those experiencing backpain and Phil Sizer of Pain Association Scotland provides advice on pain managment programmes. We also learn about the epidemiology of pain, and hear from Generation Scotland about how learning more about this can help with the identification of risk factors. With Dr Shilpa Patel, Dr Sue Peacock and Sir Michael Bond providing more information on different cultures and pain.
Airing Pain : Programme 12 : 1st March 2011
In Programme 12 Paul Evans looks at Sativex and also considers the effects of taking illegal street cannabis. Trigeminal neuralgia is discussed in detail and more listeners questions are answered by doctors.
Airing Pain : Programme 11 : 15th Febuary 2011
In Programme 11 Paul Evans looks arts and crafts whose therapeutic qualities may have been recognised by their practioners for centuries, which have only come under scientific scrutiny over the last decades. We visit Bath’s Royal United Hospital Pain Clinic where their Stitchlinks group meet. Stitchlinks is an online support network for people who enjoy using crafts therapeutically. Dr Laura Mitchell of Glasgow Caledonian University is an experimental psychologist whose background is in music psychology. She discusses the value of music in pain management.
Airing Pain : Programme 10 : 1st Febuary 2011
In Programme 10, Paul Evans visits the Bath Pain services to find out what goes on at the Pain Management Programme there. We meet the patient group to learn about their experiences in living with pain, and what brought them to Bath, and learn about how the programme can help young people in pain.
Airing Pain : Programme 9 : 18th January 2011
In Programme 9, Paul Evans meets Pain Nurse Kathryn Nur and listens in on two consultations with her patients. We learn what TENS machines are and how they can help those in pain, and how acupuncture can help. We also meet Ann Taylor and learn about how her new web service, Paincommunitycentre.org will better educate health professionals about people in pain.
Airing Pain : Programme 8 : 4th January 2011
In Programme 8, Paul Evans starts the new year by looking at how people with pain can stay in, and get back to work. The programme also looks at what benefits are availAble for those in pain, and the difference between having a “sick note” and a “fit note”.
Programme 8 was produced with an Educational Grant from Napp Pharmaceuticals.
Airing Pain : Programme 7 : 21st December 2010
In Programme 7, Paul Evans visits the Frenchay Hospital Pain Clinic in Bristol to meet the staff and patients there. We learn about how to talk to your health professional and about how to improve your excercise and mobility, and the patients at Frenchay tell us their stories of living with and managing pain.
Airing Pain : Programme 6 : 7th December 2010
In Programme 6, presented by Paul Evans, we learn about the background to how arthritis causes pain from Dr David Walsh, while Dr David Laird explains just how pacing can help manage pain. We also cover some of the more recent developments in pain management in the community, and Pete Moore, author of the Pain Toolkit, provides his personal story.
Airing Pain : Programme 5 : 23rd November 2010
In Programme 5, presenter Lionel Kelleway visits the Bronnlys Residential Pain Management Programme in Wales. As well as learning about what happens at pain management programmes from the staff and patients, we hear Lionel’s personal story in learning to manage his pain at Bronnlys.
Airing Pain : Programme 4 : 9th November 2010
In Programme 4, Dr Rae Bell tells us how a good diet can help in managing pain, Vidyamala Birch explains how Mindfulness can help, and Ron Parsons talks about his experiences living with pain. Dr Mark Turtle once again answers your questions in our Q+A session.
Airing Pain : Programme 3 : 26th October 2010
In Programme 3, we meet Sam Barton and his mother Jan as they take us through Sam’s story of growing up in pain. We also hear about helping young people manage their pain,and Dr Amanda Williams provides answers in our Q+A session. Finally, we pay tributeto the late Claire Rayner, Patron of Pain Concern, who died October 12th aged 79.
Airing Pain : Programme 2 : 12th October 2010
In programme 2, we hear Rachel Yorke talk about Neuropathic Pain, post-operative pain,shingles, and how you can manage it, while Dr Mark Turtle provides answers to yourquestions about living with, and managing pain.
Airing Pain : Programme 1 : 28th September 2010
In this first programme, presenter Lionel Kelleway introduces us to chronic pain, how to manage it on a daily basis, and provides a taster of what is to come later in the series.