Setting the Meeting Tone: Defining Chronic Pain

Summary of SIP Symposium 18th November, 2014, Brussels, hosted by Marian Harkin, MEP, European Parliament.

Introduction:

The 5th Societal Impact of Pain Symposium, attended by policy makers, MEPs, politicians, government officials, representatives of patients’ groups and health care professionals from across Europe was opened by Dr Chris Wells

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President of EFIC, the European Pain Federation of IASP Chapters, which represents 37 countries and 20,000 healthcare professionals throughout Europe. Dr Wells thanked Ms Marian Harkin, MEP, for hosting the meeting and the Italian Government particularly for putting pain and palliative care on the agenda during their presidency of Europe when they had called for prioritisation of pain therapy and palliative care. At meeting in Milan in September 2014 hosted by the Italian Minister of Health it was decided that all European Ministers of Health would prioritise healthcare professionals’ training and particularly look for effectiveness of pain therapy for the about 100 million people in Europe impacted by pain.

The SIP annual meeting aims to a make a major contribution to pain care in Europe. This year’s 5th SIP meeting, moderated by Nick Ross, renowned English radio and television presenter, was arranged as four interactive panel discussions over the course of the day.

Panel 1 discussed the reasons for and causes of continued inadequate pain treatment; Panel 2 looked at the different options in treatment and management of pain; Panel 3 looked at the Italian initiative and how this could be leveraged across Europe to make pain treatment more effective and Panel 4 discussed the milestones to determine managing and measuring progress and improving the situation.

Setting the meeting tone: defining chronic pain

Moderator Nick Ross introduced a videotalk by Dr Elliott Krane, Professor of Pediatrics and Anaesthesiology, Stanford University School of Medicine. Professor Krane discussed the onset of windup and mechanisms involved in the transformation of acute pain to chronic, outlining the phenomena of allodynia and hyperalgesia underpinned by the plasticity of the central nervous system. Dr Krane’s message was very optimistic in that he considers that drugs will be developed for the future targeted treatment of the disease of chronic pain rather than, as currently, chronic pain being treated by a symptom modifying perspective which requires a complex, often lengthy, multidisciplinary treatment approach.

Panel 1 discussion:

Professor Hans Kress, former President of EFIC, endorsed the description given by Prof Elliott Krane regarding the awful burning pain of hyperalgesia and the experience of the person experiencing chronic pain. Professor Hans Kress described how acute pain is a normal response to potential or 1 actual tissue damage and is warning signal which, under normal circumstances disappears spontaneously when a wound is healed. In contrast, chronic pain is a constant, uninvited companion for the remainder of the sufferer’s life with many unpleasant psychosocial consequences such as anxiety, depression, social isolation and poor sleep, leading to reduced mobility and reduced activity with a consequent possible loss of working ability and capacity and ultimately disability. Chronic pain is a disease. Chronic pain differs from other types of disease in that there is usually or frequently no visible or obvious tissue damage because the neuroplastic changes which underpin the person’s chronic pain experience have taken place within the nervous system. Chronic pain is notoriously difficult to treat and currently, frequently no specific analgesic drugs alone can accurately treat chronic pain which requires a complex multidisciplinary approach.

Dr David Hughes, Professor of Health Economics, University of Chester, detailed the social consequences of chronic pain and the numbers involved. Approximately 100 million people in Europe suffer from chronic pain, 500 million sick days are caused by chronic pain, with a cost to Europe of about €34 billion per annum. Approximately one person in five with chronic pain loses their job, which affects the person and his or her family as well as the abilities of economies to function correctly. About 3-10% of GDP is lost because of chronic pain and across the board health resources are utilised more intensively for chronic pain more than for any other disease. Chronic pain has a major negative impact on the quality of life of the patient and his or her family. One person in six with chronic pain would prefer to die, with profound personal, familial and social consequences.

Dr Shelagh Wright, Psychologist, author, pain educator and retired nurse commented on the need to improve healthcare professionals’ knowledge and skills for understanding and treating the person with pain. Dr Wright commented that, ideally, legislation is required to ensure instigation of a mandatory undergraduate core curriculum which includes pain management for all healthcare professionals in the multidisciplinary team to improve standards of care for all patients with all types of pain. Inadequate knowledge and skills on the part of health care professionals leads to poor decision-making at all levels of the healthcare system which impacts on patient treatment and ultimately on patients’ safety. Dr Wright commented that in Ireland the implementation of the 2nd National Cancer Strategy made a massive improvement to quality multidisciplinary care for patients with cancer and that currently the focus was now on improving standards of care for patients with chronic pain of non-malignant origin.

Dr Maria Teresa Garcia Bacquero, Coordinator of the Regional Palliative Care Programme, Health Care System of Madrid commented that sometimes lack of understanding of the patient’s pain experience leads to problems from a teaching perspective One problem is caused by inadequate knowledge of correct pharmaceutical interventions in palliative care for example and so health care professionals require both optimal education themselves as well as the facility of rapid access to specialist knowledge for patients who require complex pain interventions. Harm is done when the wrong drug is given for the wrong treatment due to lack of knowledge and skills. From this perspective access to specialist knowledge is essential for patients who require complex treatments.

Moderator Nick Ross described how often there is no policy in place when a person needs treatment for either chronic pain or acute pain. Untrained and uneducated healthcare professionals can be completely ignorant of how to treat each type of pain and there is no standardisation of knowledge

2 across the health care system. Prof Hans Kress commented one of the major problems is that chronic pain does not fit with a traditional disease concept, so someone who is in a lot of chronic pain usually does not have obvious tissue damage that can support their statement of their pain experience and distress. One of the major requirements for healthcare professional training is a change of mindset in understanding the pathophysiology of chronic pain. Another problem for both acute and chronic pain is that the patient’s pain is not objectively measurable, so what the patient says has to be believed.

Neal Betteridge, Vice Chair of the Chronic Pain Policy Coalition (CPPC) UK, commented that this is a problem that can be addressed by regarding the patient as part of the health care team, which happens in more enlightened locations. Patients need to be represented, their voice needs to be heard and they need to work with healthcare professionals in all aspects of patient care from policy design, education and clinical practice. Prof Hughes commented that problems of budgetary restraints could be overcome by seeing the benefit of utilising effective treatment for chronic pain to improve patients’ health related quality of life. A concerted approach to chronic pain treatment can maximize health benefits across populations.

Panel 1 members summarised the major obstacles and problems in terms of requiring quantification of the issues, prioritisation of treatment of populations with chronic pain, legislation to ensure mandatory teaching to enable optimal knowledge and skills at undergraduate level, promotion of consistencies for policies and standards for patient care, underpinned by the need for a cultural shift in attitudes.

Panel 2 Discussion: President of EFIC Chris Wells stated that, even though major obstacles of quantification and qualification existed, in his opinion the biggest problem is system failure. For example, in certain locations even though oncologists have the knowledge and skills to adequately treat patients with cancer pain they don't. Reasons for this are multiple and it seems that, in these instances where the knowledge is available and yet the system fails, cultural issues are at play.

Dr Meherzin Das, Consultant Clinical Psychologist and Clinical Lead, Dorset Community Pain Service commented how she has, for the last 10 years, been inspired by the stories of people who live with pain. Dr Das described how her experience in working with patients with pain made her realise that often patients present to the health care system far too late and don't seek treatment early because they don't think they're going to be believed by healthcare professionals. This realization prompted Dr Das to lobby for funds for early interventions for patients with chronic pain. One of the elements that she had to change was the slow referral patterns of GPs for psychological interventions for patients with chronic pain. Dr Das considers that use of the term ‘chronic’ may be part of the problem in that both patients and healthcare professionals subconsciously consider that chronic pain has to be there in the long term before it is actually addressed. Dr Das suggested that pain that is transitioning from acute to chronic should be treated at an early rather than later stage and early intervention should be encouraged. This involves health care professionals really understanding the neurophysiological substrate mechanisms involved in the etiology of chronic pain. Establishing an early patient referral and intervention pathway could contribute to solving the problem of chronic pain.

3 Audrey Craven, President of the European Alliance of Neurological Associations commented on the importance of education for patients as well as for healthcare professionals. Patient education is an extremely important aspect of self-management. Patients need skills to manage their pain and Audrey has taken the approach of asking policy makers the question ‘ if we can learn to self manage our pain disorders, what can you do to provide the services we need and how can the services be properly staffed with healthcare professionals who are fully trained and educated?’ Ms Craven described how the stigma of being considered as ‘malingering’ and ‘making things up’ is putting patients off admitting they have a problem. Patients may suffer in silence for a long time. Consequently, when they eventually seek help, their pain problem may be very serious.

Orsi Nagy, Policy Officer at the European Commission, outlined the importance of politicians recognizing the financial benefits of addressing the population issues regarding chronic pain. Currently in the European Parliament the emphasis is on growth and jobs. The concern needs to be at the societal level in terms of the person affected by pain, how much a multidisciplinary intervention would cost a member state for that person and comparing that cost to the long term costs to the state both in terms of economic benefit in enabling the person to return to the workforce with not doing so. Associated costs related to disability, health and job loss to the state and massive reduction in quality of life to the person should be factored in to the equation. Early diagnosis and proper treatment on a population basis would be highly beneficial for society and for the economy. Health care education and training are political requirements. The aging population will double by 2050. Nearly half of all of health care professionals in Europe are currently aged over 45 years of age, so there is a strong argument for a societal perspective which focuses on early rehabilitation and the prevention of both chronic pain and disability for patients and optimal education and training for health care professionals. Quantification of the problem and evidence of intervention effectiveness would be hugely helpful.

Jamie O’Hara Director Healthcare Decisions and Senior Lecturer in Health Economics at Chester University stated that chronic pain is a problem that cannot be ignored and early diagnosis is key otherwise ‘the ship has sailed’. Currently across Europe 50% of patients are not diagnosed with chronic pain in the first year; 72% of those patients have their work life affected and 42% aren't able to return to work. A large study of 840,000 patients with chronic pain in Sweden looked at the patterns of work, cost and caregiver burden. In this Swedish study 10% of the entire yearly GDP was lost due to chronic pain. President of EFIC Chris Wells stated that at the European level chronic pain is recognised as disease but this legislation has to filter down to member states with the required implementation of service referral pathways, health care education and training.

Moderator Nick Ross encouraged audience participation in this second panel session. Dr Chris Baker, General Practitioner, said that clinicians need to be bothered about pain which is a cultural issue. Dr Barker described three components to the problem for General Practitioners: sufficient time to adequately assess the patient; optimal education to allow the General Practitioner have the ability to make the correct decision because frequently they do not have the education required to do that currently and thirdly appropriate patient referral pathways to appropriate services. President of EFIC Chris Wells stated that pain management interventions are there, they're being used and they are highly effective but funding often isn't provided and they are not consistently offered across services. Particularly with back pain the person suffering chronic back pain can be rehabilitated to return to work quickly and 50% incidence of disability associated with back pain can be prevented. In companies where these types of programs have been put in place (for example

4 Boeing) they have shown massive cost effectiveness. There should be legislation supporting mandatory programs of rehabilitation for chronic pain.

IAPO Board member Robert Johnston stated that it is necessary to raise expectations amongst patients so that they have the courage to lobby and promote the issues and form strategic alliances to be able to have their voices heard. Patients should be in partnership with their care providers, the patient's voice heard and understood and patient-centered care provided. It was agreed by panel members that a code for chronic pain is required to allow a database across European countries to be established. This would permit monitoring of the effectiveness of different types of treatments for different types of chronic pain to look at costs and benefits. Currently chronic pain is only coded in France whereas all other diseases are coded across the developed world so that interventions can be monitored in terms of costs and benefits and patient outcomes. This needs to happen for chronic pain so that optimal databases are established to allow quantification and the development of a strong evidence-base.

Panel 3 discussions began with a message by Dr Marco Spizzichino representing the Italian Minister of Health emphasising the Italian government’s commitment, during Italy’s Presidency of the EU Council, to creating a model of multidisciplinary pain therapy for patients with chronic pain and for pain management in palliative care through a network and to aim to improve pain treatments in Europe. In introducing Law 38 the Italian government recognised that it is difficult to guarantee adequate pain treatment for patients who suffer pain associated with incurable disease. Approximately 35% of patients have pain every day and some patients’ severe pain intensity results in their experiencing suicidal ideation; 26% of patients with pain cannot work; while 56% have severe pain only 41% receive opioid interventions. Law 38 defines aid networks and organisation models to be applied to pain therapeutics. Unfortunately an organisation model is not yet available everywhere and people need to be committed to work in networks for palliative care which need to take into consideration pain requirements for different populations across the lifespan. An information system needs to be established to monitor effectiveness of pain interventions and to ensure adequate and appropriate medication is available to meet patients’ analgesic requirements. The Italian government would like to see two European Days of Pain introduced: one day for palliative care and pain and another day for pain therapy. Law 38 states that citizens have right to avoid suffering. Article 1 of Law 38 states that the priorities are to defend patients’ rights and avoid useless suffering. Dr Spizzichino commented on the discussion about medical training and stated that doctors and all health care professionals need to be more human. Law 38 obligates the health care professional to measure the patient's pain so that when the patient arrives to the hospital or care setting there is an obligation firstly to measure the patient's pain intensity, then assign a therapy, and then to measure the final result. Economic issues are central to pain management; the results of pain interventions should be measured to ascertain cost benefits thanks to optimal actions in palliative care and in pain therapies.

Dr Giustino Varrassi, EU liaison officer and Past President of EFIC outlined how a commission lead by Dr Spizzichino had worked for 10 years to help bring in Italian Law 38, unanimously accepted by the Italian Parliament and Senate, which underpins the obligatory measurement and treatment of pain. Dr Varassi stated that the effect of this Law on the Italian healthcare system was very strong. Dr Paloma Casada Durandez, deputy Director of Quality and Cohesion Spanish Ministry of Health, Social Services and Equality, pointed out that Spain is a decentralised country with one National Health System with 17 health services. Every region operates independently. Across the regions efforts are made to reach a consensus to have common lines to develop goals and strategies and recommendations for health so consensus is vital. While National Health Service strategies are developed according to certain populations the main point is to achieve the consensus. Every region

5 is committed to have common goals and strategies and work recommendations, not only legally but also through consensus.

Professor Rolf-Detlef Treede, President of the International Association for the Study of Pain stated that the healthcare systems across Europe are different so each country should try to do what they can. There are two messages to consider: particularly with regard to teaching pain management in medical school, within the past two years Germany has implemented a new law so that there is now mandatory teaching of pain management in medical schools. Every graduate from medical school from next year will have some minimal teaching on pain management. This is a Federal and Statewide Law which took ten years to achieve. The other aspect is to create a network for monitoring purposes similar to Law 38/2010 in Italy to monitor progress and create official reports of progress across Europe. The nonprofit Citizens Network, although not government supported, have attempted this with documented reports.. Each country in the European Union should use the opportunities which present and some evidence of this should be achieved at the EU level, with governmental status.

Dr Willem Scholten, Consultant, formerly Team Leader, Access to Controlled Medicines with WHO stated that the Presidency of Italy is promoting a great opportunity for pain management and controlled medicines and giving a good example. The recent ATOME project in 12 Eastern European countries looked at legislation and policies of the countries. We have had a century of drug control; the first Opium Treaty was signed in 1912 and the world has focused on containing that drug problem and forgotten that the substances are also used as medicines. We need to change the paradigm that Public Health is served only by minimising the use of controlled substances to one with regulations which find the balance between optimal treatments being accessible to patients in need and who can use them rationally and monitored prescribing and risk management for people who self harm. Many countries impede access to medicines which people really need. Ineffective regulations such as a validity of 7 days or a limitation on the amount of daily drug which may be prescribed neither prevents or relieves pain nor prescription misuse of drugs.

Robert Johnstone, Board member of the International Alliance of Patients stated that legislation and education need to move together. Education is required to prepare people for the legislation. Cultural issues determine whether laws passed will be implemented and acted upon. It is no means certain that having a European Law means that this law can be easily implemented across the different countries in Europe, so there is a very big piece for education as well as legislation. Dr Varrassi hoped there would be an optimistic view across Europe and considers that there should be a European Law for pain measurement similar to Law 38 which is a general rule which does not tell a doctor exactly what to prescribe. Across Europe It should be mandatory to measure pain as the 5th vital sign as well as the other vital signs at each visit to a emergency unit, hospital or care provider. This is essential to change the culture as pain measurement then becomes the norm. The same problem pertains to opioid prescription for people who need opiates. It is a cultural problem and culture needs time to change. This is a problem across institutions, attitudes and health care professionals who have no pain education.

Moderator Nick Ross commented on the haphazard nature of pain management and Robert Johnstone commented on the need to form alliances and to raise the expectation amongst the

6 patient community of what they should expect when they go for care in an emergency unit or hospital or care provider. Patients need to have the confidence to have a higher expectations so they know what to expect; they should know pain should be measured; they should know they should have an intervention they should know the result of that intervention should be monitored. Boundaries need to be pushed and the health consumer can help treatments to be standardised at a higher level with better quality.

Rolf-Detlef Treede stated that cultural issues determine how helpful the effective laws actually are. Nurses need to be educated so that pain measurement becomes a quality indicator for hospital performance. For pain we do not have a good calibration of measurement. Pain is a subjective experience so only the patient can tell what their pain experience is- nobody else can measure that pain experience for them. Unlike blood pressure and temperature, respiration and heart rate, subjective pain intensity cannot be absolutely calibrated as a measure. However, a subjective number given by the patient as an indicator of pain intensity is useful and effective as long as the top end measure of the scale used is not taken too literally. Pain numerical rating scales seem to work by viewing a point about one third along the scale so that people with pain would be unhappy if their pain intensity goes above that point and less unhappy if their pain intensity is below that point. So in spite of all the technical problems this numerical rating scale works. It is meaningful if you don't take the last digit on the scale too literally. Moderator Nick Ross agreed that many tests used in health care for sensory experience, vision and hearing, for instance are subjective.

Dr Durandez commented on the need for biopsychosocial pain assessment which ascertains how the patient feels and how their pain impacts their quality of life as well as activities of daily activities of living. Pain intensity measurement and pain assessment which incorporates psychological and social measurements as a comprehensive evaluation of the patient's pain experience needs to be taught at in undergraduate and postgraduate programs.

Panel 4 discussion: Moderator Nick Ross introduced Spanish MEP Mrs Soledad Cabezon Ruiz who described the recent legislative developments for palliative care and pain therapy in Andalucía, similar to the recent Law 38 in Italy. MEP Cabezón commented on the progress in medical care that has resulted in patients with chronic pain and cancer living longer but also with more severe disease which is often accompanied by pain and other symptoms requiring palliative care. This has led to challenges to meet patients’ needs. We need to pay attention to the quality of care. We need to consider dignity, autonomy of decision making and equality in palliative care.

MEP Cabezon described how Andalucía has as 100% Public health system which wants to guarantee for its 8 million inhabitants, despite having a very economic complex situation, health as a pillar of society, equality of health and equality of palliative care. The majority of the population agree that all human beings want to live with dignity. The legislation needs to protect this expectation. Death belongs to life and to die is the final act of our living which cannot be separated from our lives. A dignified life requires a dignified death which is included in several conventions, for example in the Human Rights Conventions of the Council of Europe, 1997 and others adopted by UNESCO; each underlines the need to guarantee attention to the patient in their terminal phase of life and to the patient's end of life decisions and to have respect regarding the patient's choices and will. The General Law of 1986 or the regional law of 1998 recognised patients’ rights and autonomy in this regard. However, we want to pay more attention to palliative care at end of life. Spain has 17 regions competent for health. A law was required to meet Citizens’ demands as well as legal security for health care professionals. In 2010 the Law of Rights and Guarantees of the dignity of the person in his or her death processes was introduced in Andalucía. Citizens have put forward a request asking to harmonise the law in all the regions as Spain does not have a national law.

7 Andalucía in reforming its Statute has included in Article 20 the fact that any person has the right to receive palliative care and pain therapy and this is recognised as a fundamental right as well as the right to respect autonomy in the death process so that the patient has the right to request palliative care and demand adequate pain treatment, at home if required. The law also ensures the protection of the dignity of the person in the death process and the protection of the autonomy of the person and their will. The Law recognises the patient’s will to donate or not their organs. The Law recognises the duty of physicians and nurses to have the right information and the appropriate and adequate treatment for each person with continuous follow up to the end of life.

The Law also includes sanctions and fines and is binding when requested by the patient-the main focus is the ‘Vital Will’ by writing. The citizen informs the health service by making a Will in writing which he or she can review at any time and which is linked to the health records/ story of the patient. This is linked to the National Register of (Vital) Living Wills which can be accessed by any physicians as required for patient care. Family representatives are appointed by the Citizen always in a consistent way to follow the Living Will which is included in the Citizen’s medical dossier and registered.

After three years of implementation there are currently 27500 Living Wills or anticipated decisions registered in Andalucía. The Citizen states their will in this Living Will, it is registered and is applied by telecontinuity through the health system with personalised follow up of health care at home, in hospital or as an outpatient. The telecontinuity system, as well as addressing the patient’s needs, also helps the family and pays attention to the family’s support requirements.

Over 5000 patients have used palliative care and Andalucía has 63 units of palliative care with , 216 wards within the eight provinces in Andalucía, 47 support units for domiciliary care and 2300 professionals. Institutions promote accreditation schemes for professionals and guidelines for professionals and patients and there is a school which trains patients and their families. Finally the Law foresees a bioethic committee which regulates any objections of the professional, which is almost non existant in Andalucía and reinforces the legal certainty of professionals and patients. This Law contributed solutions to Citizens - satisfaction polls that have been carried out show that 9 out of 10 Citizens are very satisfied with their palliative care and care at end of life. Citizens are also in favour of limiting therapeutic efforts at end of life. We need to find ways of spreading this development throughout Spain.

Moderator Nick Ross commented that MEP Cabezon had set out the issues which had been comprehensively addressed in Andalucia regarding the needs for palliative care services and pain therapy ; all were issues which need to be addressed across Europe and the issue under discussion today was how to effectively begin this process. Moderator Nick Ross introduced the members of Panel 4, beginning with MEP Marian Harkin, who hosted the SIP Symposium. Moderator Nick Ross asked the question: how do we find one measurable which would not require major financial resources. It won't be possible to get major financial European resources at this stage- we can do something that doesn't take a lot of money so we need to focus on what we can do in our area of work particularly around bringing cultural change to work patterns across the multidisciplinary team so that all the team members understand that chronic pain needs to be treated .Patients need to be referred and seen earlier with a multidisciplinary approach , particularly involving psychological care , not just a pharmacological approach. This is all agreed so the question is: what can we focus on now? Training is an obvious issue which needs to be addressed. EFIC has already conducted a survey that has shown that, across Europe, only 18% (??) of undergraduate medical students receive formal training on pain. Progress on that issue that would be very easy to measure –as a campaign

8 for training of medical students in pain medicine could be implemented and monitored over time by polls to see how many medical schools actually implement compulsively undergraduate training.

Bart Morlion, President –Elect of EFIC stated that if the focus is for one year we already have a benchmark-we have numbers already regarding pain medicine training and the management of pain. It would be realistic to have a call on the European level to change the Law within the European commission and European Parliament to enforce mandatory pain medical pain education at undergraduate level. We could produce a ranking list of which countries are doing the best, make this information public to patients and health care professionals and can see which countries are doing the best and which countries are doing worse.

We need everybody in the multidisciplinary team trained to include, for instance, nurses, physiotherapists, the entire team, as well as medical education, so that the call is not just for medical education; pain medicine training requires a broad perspective. It is clear in discussions that as long as you are not recognised as an expert within your field, when you are sitting on a desk with surgeons and cardiologists the medical training goals and hours of training required are defined by the specialists rather than the basic training needs. This poses a major problem on having pain medicine training because it is not regarded as a specialty and has not the same status as the defined specialities. It would be feasible to go for undergraduate training as one of the major actions. However to enforce this we need a postgraduate training. While some universities have this it is not consistent across Europe and has no value for coding or for how much time you can share with your patients.

If we install a Law for access for patients who require referral to pain medicine and pain therapy within six weeks if we don't have the professionals trained and the structures to deliver the service we can't enforce the Law. It all comes down to training.

Moderator Nick Ross commented that the patient is at the heart of the issue; however that this is a long term issue, as the medical student is studying for 6 years, then for more years for postgraduate study before becoming specialised. Given this lengthy time to become a specialist what should the focus of the next 12 months be?

Neil Betteridge, Vice Chair of the Chronic Pain Policy Coalition CPPC and formally Chief Executive of patient association Arthritis Care UK, stated that he would take a broader view and commented that form has to follow function. Neil Betteridge considers that it is really important for this community to work out the function side –what it wants to do- and to ask if there are existing structures that can deliver on that and if not what would a new structure look like? As Wordsworth said ‘you would murder to dissect’ if you attempt to separate those two things. Consensus on what ‘good’ looks like -that is, what we want to see happen – is required to arrive at best practice-which as yet is an unknown. We need to agree what best practice is, arrive at a consensus and have a unified approach to getting a structure. This may take some years to really develop. For example EFIC and Grünenthal together are SIP, which is a platform, a unified structure which has developed over 5 years with a remit to reach diverse groups of populations and specialties with pain medicine requirements as well as policy makers. So the pain community needs to agree what best practice is and work out a multistakeholder structure. Training is required for practitioners to deliver the agreed best practice and best possible care-the latter as yet not agreed. Moderator Nick Ross commented that we need to have a consensus about what is best practice but let’s get something on the tracks

9 Neil Betteridge, CPPC, stated that all the external developments have a binary approach which combines the voices of patients with the voices of healthcare professionals; so we need organisations with co-chairs. This is now about to happen with CPPC which will lead with one patient representative and one clinician. We should be having that conversation so that Pain Alliance Europe can work alongside EFIC’s members and others so that we present a united front; we can create the appetite for change to happen and we would need to know what that change looks like.

Bart Morlion stated that what Neil was outlining was a mid-term solution.One major problem in pain medicine is lack of clear definition. There is currently a lack of professional structure in contrast to, for example, diabetes or rheumatology medicine. While we represent 20,000 health care workers mainly in Europe but we do not have this backbone like the other specialties and that is why we haven't got a starting point. We try to be present where we are invited and called in. However without the same professional backbone which other successful projects have we all stick around in little circles.

Günter Danner, Deputy Director, Liaison Bureau of the German Social Security Institutions commented that, from the economic perspective, awareness, which is being done today and is very impressive, education, which is a process and we can start with this and exchange, together lead to best practice. Make way not to fragmentalize the discussion because we cannot actually just concentrate on one care aspect. Due to the debt crises more and more health care systems are falling apart. The systems in bigger countries and smaller countries cannot be compared or ranked with each other. For example, in 2009 the bill for opioids in Germany was 2 billion Euros. A small country cannot do this per capita because they do not have the revenue; their population may be laid off work or looking for employment abroad. Therefore it is necessary to raise awareness of the importance of having patient access to care financed by a social system of care giving. Without money there is no treatment or education. The small countries depending on tax revenue in EU countries have shattered social healthcare systems. Lack of revenue reduced employment, training and education and leads to longer waiting lists for patient care. It is very important to have an eye for the social security component of access to care. Otherwise health care has to be private which is limited to those who can afford it.

MEP Harkin focused her comments on the economic issues and economic problems for some of the member states of the European Union. MEP Marian Harkin stated that in the European Semester , the European Commission looks at the budgets of member states and assesses budgets and spending targets. The European Commission is now going to look at healthcare following the European Parliament having pushed very hard that more than economic indicators are considered and to include social indicators. MEP Harkin stated that she was looking at the practical element of what can be done now or in the near future. While it would not mean more money generally for health it might mean that the health sector gets a larger slice of the cake.

MEP Marian Harkin also stated that Ireland had now recognised Pain Medicine as a medical specialty in its own right and that she had spoken to Dr Liam Conroy who had commented on training and cost benefit. The Irish health care system plans to design post surgical care packages for patients to prevent the development of chronic pain, and have the patient return home sooner so the economics of treating pain are also very obvious.MEP Harkin commented on the formation of interest groups at the European Parliament level, such as the setting up of a Brain Mind Pain interest group (led by EFNA and PAE ) which will happen in early 2015.This interest group can coordinate with other groups such as the Disability Interest Group (of which MEP Harkin is Vice President), the Mental Health Interest Group and the Diabetes interest Group both of which MEP

10 Harkin is also involved in, to look at the cross cutting issue of pain and raise awareness and reduce stigmatization which is a major issue for many people.

Moderator Nick Ross commented that raising awareness has to be fundamental. The use of techniques like ‘shroud waving’ favours acute medicine so it is very important that groups representing patients with chronic illness also have their voice heard.

Moderator Nick Ross then opened the issue to the floor stating that two factors for this panel 4 discussion already agreed were that a consensus is required and that the voice of the person with chronic illness through representation by their specific interest group also must be heard. The primary issue agreed for addressing in the next year and for the next few years following was by a virtually unanimous show of hands agreed as training and education in pain. Bart Morlion stated that another important factor was accreditation of hospital and other health care systems where financing is mandated on correct measurement and, documentation of pain as the 5th vital sign and monitoring of pain which can be combined with educating every patient so that patients and health care professionals are educated about pain measurement. This is included then in patients’ rights and patients know they should be asked about their pain. This may be confrontational if patients know their pain should be measured and health care providers don’t measure pain-it would be very helpful to improve pain measurement. Moderator Nick Ross questioned whether, in the immediate term, it might be very negative if many patients found that their rights from a pain measurement perspective were not being met. Members of the audience commented on the vital need for patient education and health promotion for pain. Neil Betteridge commented that awareness raising and patient education matters a great deal as most people with a chronic condition are at home trying to manage their pain. Supported self management is vital and is a good investment in that supported self management is recognised by the PAE as helping people to decelerate their deterioration, to stay independent and to stay working with a family life.

Moderator Nick Ross commented on change resistance, particularly the change from providing certain types of care at local hospitals instead of in the community with increased emphasis on self management and to improve care standards.

A member of the audience commented that pain and chronic pain should be on the agenda of the European Commission, Digihealth and on the Health Policy Forum. The Italian Presidency should not forget this topic in their final conclusions and that the European Commission create and support a network which includes all the operators on chronic pain. Moderator Nick Ross stated that it is very important that this gets included by the Italian Presidency in their concluding reports and becomes formal policy.

A member of the audience, a representative of the Spanish Patients’ Association stated that frequently while people in pain can help each other they are often sick and are volunteers. The Patients’ Organizations need more input from the health care professionals.

Moderator Nick Ross commented that it is unarguable that: 1. Patients have got to be at the heart of this;2.patients’ self management is the ideal; 3. patients’ organisations need as much help as they can obtain; 4. more resources are required 5. Europe needs to have a common framework so that those with the best can pull up the rest. 6 possibly a ranking is required to ‘ name and shame’ and to highlight those countries that are not doing what they should be doing 7. training and education require a strong focus.

11 Bart Morlion stated that he did not hear any proposal during the day that he could not support.There are many good ideas, strategies and policicies. However we have to remember that chronic pain affects one in five of European adults so whatever we choose to focus on, the impact should be as broad as possible-network and home care are essential, as well as hospitals. So for example, self management by internet, which scientific studies show seems to work. Bart Morlion made a particular point about problems which arise when there are internet based programmes for patients with pain when the multidisciplinary care team is not trained and educated in the issue. He asked ‘What is the use if you come to your GP and he or she is unaware of the internet based self management programme or if a psychologist should be involved?’ He stated: So if we have to reach for a short-term, realistic, achievable goal in the next twelve months we have a benchmark-I would go for ‘ name and shame’..

Moderator Nick Ross stated that, when he started this Symposium he thought it would be a matter of channelling in more resources-however that is very hard to do in this climate...however from what we’ve heard today a lot of answers lie within our own resources; for example cultural change is not just a cost issue; we can get better training; improving cost benefit to the economy is an obvious sell; very little progress has been made across Europe apart from some countries. However after ten years now there is an opportunity for change. Moderator Nick Ross thanked Konrad Labuschagne, Grünenthal for his extraordinary major efforts in working with EFIC and thanked the panels and the audience and handed over to SIP Symposium MEP Marian Harkin.

Marian Harkin, MEP, in her address to the SIP Symposium stated that she was very pleased that Ireland has recognised (chronic) pain as a specialty in its own right with implications for training, which, while this is a long term issue, could surely begin with in-service training. In recent times high profile media personalities such as sports stars have spoken about their own mental health issues – the same type of media involvement could be used to highlight issues for chronic pain patients. The Italian Presidency must ensure that in their concluding documents at the end of their Presidency that pain is included in their council conclusions. When the next SIP symposium takes place in 12 months time we need to be able to state the actions that have been taken together with their outcomes. If all of the actors here today try to do that we may be able to see some progress in twelve months time. If we can manage to do that this would have been a worthwhile conference.