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1 STOCKHOLM 11TH September 2012 EFNA Awareness Day CROSS-BORDER HEALTHCARE John Bowis It was the American poet Robert Frost who said: ‘The brain is a wonderful organ. It starts working the moment you get up in the morning and does not stop until you get into the office’ For politicians you may think that it stops working once you get into electoral office! My task today, however, is to convince you that sometimes we get it right and sometimes produce a piece of legislation that is of real actual or potential benefit for humankind and in particular for those of us who have health needs, which are not being adequately met. I have spent much of my time as a politician, in Britain and in Europe, wrestling with the problems and embracing the opportunities that come with responsibility for health policy. Within that time the issues of neurology and the challenges of the human brain have become a fascinating, sometimes infuriating but often rewarding, part of my life. You may think that I must have some form of brain disorder to want to be in politics in the first place and you may think your suspicions were confirmed when I moved from a couple of decades in British local and national government into another decade in the maelstrom (good Scandinavian word) that is European politics. But I love politics as much as I love health because I have come to realise that politics is a key partner – along with patients, carers, professionals, managers and scientists – in diagnosing health policy problems and prescribing solutions and seeking to put them into action. Politicians can be part of the solution rather than part of the problem. And I learned over the years that, just as the individual alone cannot solve his or her health challenges; nor can doctors or researchers or clinics or hospitals - and nor can nations. Health is international. Diseases cross borders and so can cures. 2 Science is global and becoming more so with modern forms of our information society - internet and networking and telemedicine and multinational research companies and agencies So why should patients not also look beyond local or national borders, if they are prepared to do so? ‘Prepared’, as in ‘willing’, and ‘prepared’, as in ‘made ready’. That was the question on which the European Court of Justice was asked to rule fourteen years ago and on which the European Parliament and Commission and Council were asked to legislate and on which Member States are now implementing. And all of us were and are doing so because patients and their advocates demanded that we should. And, once the European Court had ruled in favour of patients’ rights, there was a new imperative on those of us, who personify the democratic process, to act. It is sometimes forgotten that there are four, not three, European institutions. We think of the Commission, with its constitutional right to propose legislation and the Council and Parliament, with their joint right to legislate and then again the Commission’s responsibility for enforcement of implementation. But in fact it is the fourth institution – the European Court of Justice, which rules on issues around the Treaties and moves policy on by their judgements. And so, in1998, health policy was moved on, not by the Commission or Council or Parliament but by the Court. It gave its judgement in the Kohll and Dekker case. These were two Luxembourg citizens, one of whom had received orthodontic treatment in Germany and the other had bought spectacles in Belgium and who had been refused reimbursement by their home country, on the grounds that they had not received the necessary prior authorisation for their treatment. The Court ruled that the authorisation requirement, which was not necessary for treatment in Luxembourg, was in violation of EU rules on the free movement of goods and the freedom to provide services. 3 For the next twelve years the lawyers of Europe made policy on patient mobility - extending the ruling to all medical treatment, including hospital care and confirming it applied to all health systems and sectors and limiting the cases and circumstances when reimbursement could be refused. Broadly the Court established that, under the Treaties, European citizens had the right to travel to another part of the European Union to receive medical treatment and, so long as the treatment was normally available in the home country and the reimbursable cost was no more than would have been paid in the home country, then the patient should be reimbursed. There was already a clearly established social security route (the E111, now transformed into the European Health Card) whereby we can happily travel on holiday, studying or working throughout the EU and, if we have an unplanned health need, we can wave our card and receive treatment on the same basis as applies to local residents. But only a cumbersome and seldom authorised (except in very small countries like Luxembourg and very liberal ones like Sweden) E112 system permitted people to go to another country specifically for treatment. This system required prior authorisation, which was rarely given and so rarely sought. It is from this base that lawyers began to move patients’ entitlement forward. A series of cases moved the rights on from medical devices to treatments, to inpatient treatment and the British case of Yvonne Watts established it applied to taxpayer systems as well as insurance ones. The judgements also restricted the possibility of requiring prior authorisation without good cause. I had a habit of putting a signature to all the Reports I wrote for the Parliament, in the form of a quotation from a European luminary whose words had some relevance to my theme. 4 For my Report on Patient Mobility in 2004 I took an optimistic and positive line and chose Louis Pasteur. “La Science ne connait pas de frontiere parce que la connaissance appertient a l’humanité et que c’est la flamme qui illumine le monde” (Science recognises no borders, because knowledge belongs to humanity, and is the torch which lights up the world). By the time I took my Report on Cross-Border Healthcare to the Parliament and Council of Health Ministers, I was feeling rather more frustrated by delays and Member States looking for long grass into which to kick the judgements and so I switched to another Frenchman, Jean Giraudoux : “Jamais poete n’a interpreté la nature aussi librement qu’un juriste la realité” (No poet ever interpreted nature as freely as a lawyer interprets the truth). The Court judgements showed that the lawyers of Europe were deciding this area of policy, because the politicians had failed to do so. I believed it was the job of those of us who are elected to national or European parliament to decide and take responsibility for policymaking and to give procedural clarity and legal certainty to those patients who wished to use these new rights. Some governments (and I shall not name them) quickly saw the need publicly to accept the judgements and to take legislative action. Others (and I shall certainly not name them either) persisted with the view that the present system was fine and nothing need be done. I was minded of the, maybe apocryphal, story of the United States Navy exchange with the Canadian authorities off the coast of Newfoundland some years ago: Americans; ‘Please divert your course 15 degrees to the north to avoid a collision’ Canadians: ‘Suggest you divert your course 15 degrees to the south’ Americans: ‘This is the captain of the aircraft carrier USS Missouri, a very large ship of the US Navy. Divert your course now’ Canadians: ‘This is a lighthouse. Your call’ 5 Eventually we avoided our non-legislative rocks and reached an acceptable agreement but out debates had their moments! In fact I understand the concerns and the fear of the unknown and of uncertain costs and numbers. But I never thought we were talking about vast numbers of patients waiting to pack their bags and travel for treatment. Most of our citizens are local community animals, who are not overly ambitious to sample the delights of beds and bedpans in remote hospital or clinic environments. Language may be a deterrent for many. We prefer Local, if Local is available. If it isn’t, we prefer regional. Only if we have waited too long and we are at the end of our tether, are most of us interested in exploring other options. Some of us may have relatives or close friends in other parts of Europe and that may be an incentive to see what is available there. But most of us are hoping local services may be improved and we are on a range of expectation, from interested to impatient, to see how our new rights are to be realised. So we continue with national health policies in each Member State of the EU. No Pan-Europe Health Service. But we shall have new powers for the patient to bypass sluggish national or local services, if they are not up to a reasonable standard of waiting time. Personally I can see no reason why – in time – if Europe is to be a real Community, we should not be happy for patients and their medical advisers to use referrals to wherever in the EU they wish. It would be the step that makes a real reality of the single market and complete the progress of patients’ choice and rights. Perhaps the current movement towards empowering patients to take greater responsibility and make informed choices over their own health needs will make this happen anyway – in time. But for now we are where the Court and legislation leaves us. And so the Court still wraps patients’ rights in a cocoon of provisos. The word ‘proviso’ has come down from mediaeval Latin. Perhaps we should find a more positive word that is more in tune with our times! 6 The treatment sought must be normally available in the home country and the cost must be comparable So no dashing off for abortions or the new wonder cure discovered in South America, because your own country does not permit them And no racing across the border from a less well-off country to have an expensive treatment in the next door wealthy country – unless of course you are prepared to pay the difference. Both are deterrents against mass patient movements. Nor are doctors or hospitals required to accept patients from abroad and so there is no problem of local people being disadvantaged because of a large influx of foreign patients. Crucial to the success of the new policy will be information for patients and their medical advisers. The key will be the Information Centres Member States are now required to set up. Patients and doctors need to have their questions answered. When I was writing my Report, I tried to put myself in the shoes of someone considering the possibility of using this new opportunity and the questions to which I needed answers were: Do I qualify? What is Undue Delay? – Do all medical conditions qualify and does there have to be a level of severity and any limitations on age? Do I need to apply or notify someone and, if so, how do I apply,? How do I or my GP decide what my options are? – country/hospital/specialist/aftercare How do I know what the price would be if I had the treatment locally, so that I know the limit to reimbursement, if I decide to go? Can I top up if the price is higher than in my home country? Who decides if the type of treatment complies with the new criteria? – I need to know before I go, not find out later. How do I appeal, if I disagree or do I have to go to court each time? Who will have access to checks on professionals? How will patient records be exchanged? 7 Who pays for my travel / and for an accompanying person, if, say, I am a child or frail? What channel do I use for complaints if something goes wrong? How will reimbursement be effected? What will be the international interface between different systems (Beveridge/Bismarck)? And between Euro & non-Euro zone countries? Is my mental illness covered? The clock is ticking. Member States have until 25 October 2013 to implement the policy and to answer the questions that are left to national discretion. Nevertheless we still have time to get it right. After all, many, perhaps most, will prefer a managed option. We already have experience of bilateral & multilateral agreements between Health Services and between Governments, such as the UK’s Waiting List Initiative contracts in Bruges and Thessaloniki. We already have examples of Border Regions – such as the Maastricht/Aachen/Limburg experience and that of Veneto and Slovenia, crossing borders and we have Hospitals under the Interreg scheme building alliances, such as between Strasbourg, Luxembourg and Liege. But over time more will seek and find solutions to their health needs in other Member States. And for those who decline or are reluctant to travel, it will be seen as a spur to improvement of home health services, if their citizens are opting to go abroad and paid for by those home services. And they cannot under the ECJ rulings be forced to go to the Country or hospital of existing cross-border contracts and agreements. It will of course be useful additional income for receiving services and countries. It will come to be accepted that we don’t all need to do everything in health - especially for Rare or less common Diseases We may then need to consider if we need to legislate to make this simpler still – Centres of Excellence (Reference Centres) We also need to look at how the EHealth Card is working – currently they seem to be developing with different types & amounts of information in them. 8 Some in the Council were apprehensive about this legislative proposal, sometimes because of misunderstandings on what it entailed, sometimes because of confusion between the health and social security options and sometimes because they did not fully understand the implications of the Court judgements. But Cross-Border Healthcare is now European law. It is not perfect – the inevitable search for compromises, which is the European way, meant perfection was not attainable. Patients will be allowed to receive healthcare in another member state and be reimbursed up to the level of costs that would have been paid by their home country if it had been provided there and, instead of reimbursing the patient, member states may also pay the overseas healthcare provider directly, so that the patient should not have to pay up front. This is something I had included in my Report – I was trying to ensure the proposal was based on needs and not means, but the Council would not wear it. And so for now there will be discrimination against low income patients – unless the option of direct payment is taken up. I invite you to press for that. Prior authorisation to manage the possible outflow of patients will be limited to healthcare that requires overnight in-patient hospital care or treatment that involves highly specialised and costly medical equipment or where treatment presents a particularly high risk for the patient or the population. It will not be permissible to discriminate, in treatment or cost, between domestic patients and incoming EU ones but there is no requirement on a country or a hospital or a doctor to accept a patient. Member states will have to establish national contact points to provide patients with information about their entitlements and practical aspects of receiving cross border healthcare, so that patients and their GPs and specialists can make an informed choice. 9 The Directive strengthens cooperation between member states on ehealth, on the development of a European health technology network, on rare diseases and reference networks and centres, and on prescriptions. . One serious concern I have is the Council’s reinsertion of the concept of ‘undue delay’ - it was in early ECJ judgements but deleted by Commission and Parliament as being impossible to define. It means complex formulae for acceptable waiting times, for every medical condition and for the relative severity and circumstances in each case. That can only lead to less legal certainty, more ECJ referrals to test the acceptability of such formulae – more work for lawyers. Nevertheless this is a notable step forward for patients. It shows how benefits can accrue to its citizens from the decisions and actions of the European Union working together and is at least one answer to the cynics who ask ‘what has Europe ever done for me?’. So now we have the Commission’s and Member States’ implementation period. The Commission has to ensure that: Patients will have access to all relevant information via their National Contact Points Patients will know when and if there is a need for prior authorisation, on what grounds this can be refused and what their rights are to review of decision making and if necessary to judicial proceedings Patients will know what level of reimbursement applies in their case and whether they have to pay up front and reclaim There will be clarity as to who is responsible at each stage of the process and how complaints should be made and to whom National health authorities will not have to pay out more than would have been the cost of the treatment being provided at home Any conditions, restrictions and procedures applying to home treatment can be applicable for the same treatment carried out abroad Prior authorisation or notification can be required if otherwise there would be a serious adverse impact on national health systems 10 It can only be required for overnight hospital treatment, the use of highly specialised or very expensive equipment or involves a serious risk to patients or the population or if there are real doubts about the quality and safety of the particular care provider Authorisation must be given if the treatment cannot be provided at home within a reasonable time limit Member States are expected to cooperate in four areas: a) the recognition of prescriptions issued in another Member State; b) Reference Networks for rare diseases; c) a Health Technology Assessment structure for Europe and d) eHealth in a range of areas from telemedicine, telepsychiatry, teleradiology and so on and Information Communications Technology (ICT) interoperability for health. All these areas need to be addressed and implemented and that clock cannot be stopped. Not all of them are satisfactory and some will almost certainly result in new applications to the ECJ for clarification or adjudication. But we have lift off and we have progress. Perhaps we have the period of gestation for a comprehensive guide for Europe’s citizens – a ‘Patients’ Handbook’. But just a final cautionary note from Mark Twain on such books: ‘Be careful about reading health books. You may die of a misprint.’ But at least we have now improved the idea of policymaking from that Declaration of Frederick the Great’s declaration that: “My people and I have come to an agreement which satisfies us both. They are to say what they please and I am to do what I please”. The ECJ in its judgements has said clearly to Member States that they can neither say what they please nor do what they please. They must now, at least on the subject of Cross Border Healthcare, do and say what the Treaties say they should – and patients hope they will.