Airing Pain

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

This edition is funded by a grant from the Dorothy Howard Charitable Trust. 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. Contributors:  Dr Ann Williamson, British Socie

This edition is funded by Grünenthal. 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

This edition has been funded by Pfizer. 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. Contributors: Dr Ron Coop

This edition has been funded by a grant from the Moffat Charitable Trust. 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

This edition has been funded by Pain Concern’s friends and supporters. 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 s

This edition has been funded by the City of Edinburgh Council and NHS Lothian’s Self-directed Support Innovation Fund. 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 a

This edition has been funded by the City of Edinburgh Council and NHS Lothian’s Self-directed Support Innovation Fund. 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

This edition has been funded by a grant from the Scottish Government. '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

This edition has been funded by a grant from the Scottish Government. ‘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

This edition has been funded by a grant from the Scottish Government. 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 soldie

This edition has been funded by a grant from the Scottish Government. 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 dif

Delving into the issues surrounding opioids and healthcare within prisons and investigating the relationship between memory and pain. This edition has been supported by a grant from the Scottish Government.  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 psy

This edition has been supported by a grant from the Scottish Government.  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 typ

This edition has been funded by a grant from the Scottish Government. 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 di

This edition has been funded by the Big Lottery Fund’s Awards for All Programme in Wales. 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 e

This edition has been funded by the Big Lottery Fund’s Awards for All Programme in Wales. ‘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 ‘d

This edition has been funded by a grant from the Scottish Government. 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. Christine 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 di

This edition has been funded by the Big Lottery Fund’s Awards for All Programme in Wales. '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

This edition has been funded by a grant from the Scottish Government.  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.