Healthcare across EU borders: a safe framework - European Union Committee Contents

Examination of Witnesses (Questions 242-259)

Ms Jo Webber, Ms Susan Williams and Mr Tim Curry


  Q242Chairman: Welcome. We are grateful to you for giving us your time this morning. Unfortunately the representative from the Royal College of General Practitioners is not able to be with us. She is sick, as we understand it, and therefore we just have two organisations this morning. If you find that at the end of the day there are things you have not been able to say that you would like to have said, you would be very welcome to send us supplementary evidence. We would be very grateful for that. We do see this as an extremely important inquiry. When we began, we knew there were complexities. As we go into it, we discover that the complexities are even greater than we might originally have anticipated. I think it is going to be quite useful for us to uncover that for the Government and then for the Commission itself when we finalise our report, so we are very grateful to you for coming. I would like the witnesses from the NHS Confederation, followed by the witnesses from the Royal College of Nursing, to start by stating your names and official titles for the record. Then, if you want to make a short opening statement you may, but we will continue with the questions. It is helpful if you do not answer the questions in a full opening statement, otherwise we find we have to follow-up in a different way. Would you begin by stating your names, please.

  Ms Webber: My name is Jo Webber. I am Deputy Policy Director at the NHS Confederation. We welcome the opportunity to go through the issues that we have already given you in our written evidence and also to tease out some of the issues that maybe did not come over in the written evidence but which will be of help to the Committee. We feel this is an intricate, complex issue, and it does take a lot of unpicking to see the real impacts of this on NHS organisations and on the NHS system—particularly in England, I have to say. Quite a lot of our evidence is from our English members. Our members are the organisations that make up the NHS, that deliver NHS services, and that includes not-for-profit organisations, for-profit organisations, and NHS Trusts.

  Mr Curry: Good morning. My name is Tim Curry. I am a policy adviser for the Royal College of Nursing. My colleague Susan Williams will be making our opening statement.

  Ms Williams: I am Susan Williams and I am Head of International Affairs at the Royal College of Nursing. I wanted to make a few comments. First of all, I would like to say how pleased we are that you are looking at this particular issue because of its importance. Whilst the numbers of patients seeking cross-border care are very small, the proposed legislation has potentially some significant implications for the UK. As you have mentioned, this is a complex piece of legislation and we wanted to flag up initially some of the challenges in relation to this Directive. There is a tension between the objectives of the single European market for the free movement of individuals and services, which is the treaty base for this proposal, and the need for national health systems such as the NHS in the UK to plan a whole service within limited budgets and to ensure equity. There are tensions around the need to balance the rights of Member States to determine the organisation, financing, and delivery of health services in their country and the need for some assurances, particularly relating to safety, quality, and redress, if patients are being treated in another EU country to which they have a right. There are other tensions around the need to address the wider policy and practical issues for patients in cross-border care, for the patients, the professionals, the providers and the regulators in fact, rather than policymaking being based solely on individual European Court of Justice rulings on individual patients' rights. Given that context, as a nursing organisation our key concern has been to focus on ensuring that the Directive provides the framework for a workable system for the small number of patients who do seek healthcare in another European country but not that this Directive should be a highly detailed piece of legislation, particularly given that health systems across Europe vary and that there is also a wide number of different types of cross-border care. We also want to ensure that any system does not undermine continuity of care and planning of services, particularly for the vast majority of patients who are also seeking care in their locality, and we want there to be clarity in the UK about the practical implications of the Directive here for patients and, of course, for those working in the Health Service.

  Q243  Chairman: In your introduction you mentioned this issue about equity and this tension between the wider EU and individual services. We wanted to begin, as you know, by talking about equity. The RCN suggests that instead of a system whereby patients are required to pay upfront there should be direct transfer of payments between funders and that this should be made explicit in the proposal. Could you begin by expressing your views on the equity of the proposed Directive. How well do you think the proposal addresses issues of equity, including the requirement for a patient to pay upfront for their cross-border treatment?

  Ms Webber: Obviously there are some barriers that are very clear for people with less money and less resources to pay upfront, and for those physically unable to travel, and for those with language barriers which mean that they do not understand the available options in quite the clarity they need to. We feel that there needs to be good access to information so that people have a range of approaches they can choose between and that the commissioners need to have the flexibility to meet upfront costs where that is necessary to enable choice. Although we are rather concerned that the direct transfer of funds could benefit the better-off, who would have more chance of being able to take up things, we do think there are ways in which the commissioners should be allowed the flexibility to enable people to have some of their costs paid upfront. There is obviously already the E112 system, which enables in exceptional circumstances for the costs to be paid, and we wonder whether this is something that could be built on, with more guidance for commissioners so they could use this more flexibly to enable the less well-off to pay upfront. But I think it needs to be remembered that the costs are not solely the costs of treatment: there are other costs, particularly travel costs, that need to be considered. We believe that the guidance on the travel costs scheme needs wider publicity so that people are quite clear about what they are entitled to for the other costs of the treatment.

  Q244  Chairman: Just as they are with the E112.

  Ms Webber: Yes, but the travel costs scheme.

  Q245  Lord Wade of Chorlton: This is a matter that we have heard discussed previously. When I have listened to the evidence—and I am not an expert on these matters so I am just influenced by the evidence—there are clearly issues that could make it very difficult for patients, who may believe that it is an easy solution to be able to travel somewhere when in actual fact there are a lot of implications. The fact that a person is making a small payment upfront, whatever it may be, does enable them or encourage them to learn a little bit more about what might happen and the implications of doing it. Would you agree with that point?

  Ms Webber: Absolutely. I think there is a core role to ensure that the patients are getting all the information they need to make the decisions about whether they take up cross-border care. That is one reason why we would come back to prior authorisation schemes, because we believe that one benefit of those is to sit down with the patient, the commissioner, and the clinician, to be able to go through what the real cost will be to the patient and what the cost will be to the system, what needs to be borne upfront and what can be claimed back later.

  Q246  Chairman: Could I get that absolutely clear in relation to what Lord Wade is asking and the second point you have made. In terms of equity, the point you made at the beginning was that it is important that people who are better off should not have the advantage over people who are less well off. Lord Wade is saying that if you pay a bit, you think about it. You are saying that the better system would be prior authorisation. We will come to that later but I just want to be absolutely clear on your answer to Lord Wade.

  Ms Webber: Our understanding is that prior authorisation would give that time and that space for people to have the discussion about how care is going to be funded and what the best options are for them. I think that might get us over some of the issues around that alongside the commissioners having more flexibility to look at how they could part-fund costs upfront for the less well-off.

  Q247  Lord Wade of Chorlton: Would that authorisation, in your view, explain the disadvantages—the hazards, if you like—that might arise from this decision?

  Ms Webber: We would want that information to be fair and to cover all the options, so that patients can make a really informed choice about what they are doing.

  Q248  Chairman: We are going to probe that further in a little while. Could I just see whether the Royal College of Nursing has anything to add.

  Ms Williams: In our evidence we linked the payment issue with prior authorisation. Our main concern was that certain socio-economic groups would be disadvantaged if there was an assumption that all costs would be paid upfront and reimbursed. The language of the Directive is "reimbursement". Some of these costs, if they are hospital and highly specialist costs, will not be negligible and we are concerned about the fact that that might disadvantage particular groups. However, in our evidence we said that the option for transfer of payment should be given where patients have sought prior authorisation. Although that is an issue we are going to come to later, the two issues are intimately linked. We are saying that there needs to be a discussion clearly with clinicians and with funders in the UK around what the options are and what the best treatments are, and that if those are things which are agreed prior to any treatment taking place, there is no reason why those payments should have to be made upfront. It should be possible to transfer those payments. As was mentioned before, there is a system in place already under the EU social security arrangements where there is prior authorisation and where those arrangements are made and patients are not expected to pay upfront.

  Chairman: Indeed, it happens in other specialisms in other ways.

  Q249  Lord Lea of Crondall: I would like to check that both Ms Webber and Ms Williams are talking totally symmetrically about UK citizens going that way and, say, Polish citizens coming this way, because all your remarks seem to me to be more addressing issues from an NHS perspective around people going that way. Do you think we ought to be talking to the Polish College of Nursing about people coming this way? Are you talking both ways?

  Ms Webber: I think we probably are talking both ways, yes. To be clear, to get real equity we do need to enable this to work across the European Union. We would not be advocating that people who cannot afford to pay upfront should have no responsibility to pay upfront, but we are saying from an equity point of view that for the people who cannot afford it there should be some flexibility to enable them to move to receive the healthcare they want on the basis of the information they have been given. But I would have thought this was in both directions.

  Ms Williams: We have been collaborating with our sister organisations across Europe for over 30 years now. Certainly within our European Federation of Nurses Associations, where all those organisations come together, this issue about payment upfront, particularly for expensive treatment, is a concern shared. We are looking also at equity as far as possible. UK citizens being treated in the UK are not normally expected to pay upfront for treatment that would be covered by the NHS, but there are other health systems in Europe where there are thresholds and where a patient in any case would pay small amounts upfront and then get it reimbursed by their insurance systems, so it would be up to those Member States to determine how this system fitted with the system that was in place already. We have to acknowledge that the health systems across Europe are not all the same and we have different levels of co-payment and other issues.

  Q250  Chairman: Some of this does introduce many of the other areas we are going to talk about, but while we are in this area perhaps we could deal with this fraught issue of top-up which has had its own debate here in the UK, particularly in England, never mind in Europe. The RCN is particularly concerned and feels that top-up payments would create gross inequalities in care but has sympathy with some patients who may wish to top up. There is a double message you are giving us there and we need to clarify that. What do you think of the potential for patients to top up that is created by the proposed Directive? How do you think this should be addressed, particularly with regard to the principle of equity that we have just been discussing?

  Mr Curry: Perhaps I could start by clarifying our position on top-up payments because it is not a straightforward situation for many people. If we start off from the principle of asking people to add money to improve either outcomes or the choice of treatments they have, that in itself creates inequity. We are fairly clear on that. Whether we are talking about cancer payments, which were the subject of Professor Richards' review, or other forms of treatment, we are most keen to avoid a situation where some patients would have access to a business class service whilst the rest of us would be only able to have, say, standard traveller class, if you will. That was our starting point. Because of the way in which NHS guidance on private payments was constructed, where somebody brought in private funds, say, for a private prescription, particularly around things like cancer services, they lost entitlement to free NHS care with that. In a sense, it was not just that they had to pay, but that they would also lose an entitlement which was available to everybody else. That was how the old guidance used to be constructed. We are concerned about the principle of top-ups. We believe that somebody should not be able to pay to get better care to disadvantage somebody else or to take the resources away from somebody else, but the current system makes it doubly difficult, in that if somebody did pay they would lose what they should be entitled to under the NHS anyway. Our evidence to Professor Richards' review was that, because of the situation where people in need were losing entitlement to care and having to mortgage their homes, do fund raisers, and so on, we felt that top-up payments should be allowed but only for a limited period, to allow a full risk assessment of the impact of allowing a broader system of top-up payments because we do not think that enough is understood about the implications of that. Secondly, the real problem for us lies not in the principle of top-up itself. The solution lies with primary care trusts. They have the responsibility for paying for drugs which are not yet authorised by bodies like NICE to be funded under the NHS. Our members have told us that they would be working in a cancer clinic and two people would come with the same condition from two different PCTs and yet be entitled to entirely different drugs. That is clearly a gross inequity and needs to be addressed. That seems to us to lie with primary care trusts, whose exception processes are variable: some are high quality and very robust and some are not so. In a nutshell—and it is a rather large nutshell—that is our position on top-ups. We were forced to say, "Let's allow top-ups for now, do our homework, improve NICE processes, speed them up, improve PCT exception processes and the information around those, and engage clinicians more actively on this very thorny issue." I think it is one for a public debate really about how we allow this to grow. We should not allow it to creep from one state to another without a public debate.

  Q251  Chairman: I admire your optimism. I would like to probe just for a moment the issue about equity across PCTs and the difference between commissioners, because that is where the issues will also be developed. How do you think we are practically going to achieve that in the European Directive, bearing in mind the difficulties we have had coming out of postcode lotteries within the UK itself. I am sorry to ask you that, but I think it is worth following up.

  Mr Curry: A small question! Rather than trying to prescribe a precise process for all bodies, we would be looking for some consistent principles to be applied. Without naming PCTs, some spoke to us, as it were, in confidence about the challenges they face, some PCTs had a very clear process of clinical engagement and public and patient engagement and invested heavily in that, some PCTs did not have similar resources or a similar approach and so there was a more bureaucratic process. The outcomes were different. Was that due to the process or was it due to allocation of resources to the primary care trust or to the effectiveness of the clinician advocating for that particular case? We do not know. These are all good questions. Out of those questions and a sensible inquiry could come some principles which all PCTs would have to reflect, and maybe change the way they did things but at least address the principles and demonstrate they were trying to do that. On the subject of postcode lottery, it would seem sensible to us that if a commissioner is faced with a higher need for services to tackle obesity than another, then they should spend more on tackling obesity. Variation in provision is not necessarily a bad thing. It is the evidence on which that is done that is important and the ability of patients to see why things are different and to be part of that decision-making process. To go to a European level again with that, we are not looking for detail in the Directive. We are not looking for prescriptive policies and procedures and hurdles, but we are looking for some principles about equity that clearly instruct Member States about how they can best create the framework so that people receive the right information and are very clear about the impact of taking one model of care over another, particularly when it comes to top-ups. As we said in our evidence, it is not just about the care, but it is about the transport, it is about the follow-up care. Follow-up care can be just as expensive as the original treatment.

  Q252  Chairman: Do you have any different points on that, Ms Webber?

  Ms Webber: We would agree that the way in which exception panels work within PCTs needs to be revised, so that there is more consistency across the piece, so that those decisions and the way in which those decisions are reached is clear and transparent to people. We would also say, though, that one of the Richards review principles on which this was based was that there should be no detriment to other patients' entitlement to NHS treatment. Whatever was done at the European level, we would not want this to enable somebody to get more or less than their entitlement on NHS treatment.

  Chairman: Thank you very much indeed. It all moves on to information and how people know about it.

  Q253  Lord Eames: I think we are all agreed—you have already mentioned this on several occasions—on the importance of information, but we would look to probe whose responsibility you think it is to provide that information. What do you think the information needs to contain? What are the parameters for that? What is your view on the need to consider and address the information requirements of health professionals in addition to patients, because we see the importance of both. It is really information I am after.

  Ms Webber: We believe that the information needs to be about supporting choice. It needs to give patients all the different options so that they can assess what would be the best choice for them and what the best health outcomes would be from the different options. Having said that, we think there is a real issue around ensuring that local PCTs and local clinicians and commissioners do have that range of information so they can support the patient in making their choice. One thing we suggested in our evidence was that maybe there should be a network of national contact points, where information about the various ways in which the systems work might be useful, so that people have a point at which they can get more information about different national systems, but obviously we feel that the personal advice and advocacy is still the role of the local GP as the gatekeeper for a lot of care, the commissioner and the individual patient. I know we are going to move on to prior authorisation, but we do think that having that period during which you can assess what the issues are and what the various costs might be to you, and to be able to do that in a supportive way, is absolutely vital, so that people can make that good, informed choice. We do also feel that it may need guidance and capacity building, because we do not think that local PCTs would necessarily know the ins and outs of the healthcare system in, say, Poland or Hungary, and you would need to ensure that nationally there was some support for PCTs to enable them to have the right information for the patient to access.

  Q254  Lord Eames: Whose responsibility should that be? That is what is important.

  Ms Webber: I think we would say that it is the responsibility of the healthcare system. Particularly if we had a series of national contact points across the EU, that would be very helpful and it would obviously make sense for—

  Chairman: We have had great difficulty in getting any witnesses to say who in the Health Service or anywhere else. Lord Eames is really trying to press you to say—

  Lord Eames: As gently as I can, it should be said.

  Chairman: You may wish not to answer the question or say it is difficult, but we are asking you the question.

  Q255  Lord Eames: Can you help me?

  Ms Webber: I am glad I am not the only person who has found this a difficult question. Obviously from our members' point of view we would not want costly, bureaucratic burdens on PCTs. It would make sense to have one system nationally, rather than a series of local systems which meant that information had the capacity to get very muddled and mixed depending on where you were. Some of the issues we have previously talked about in terms of equity I think mean that this would have to be one central national system. Where that sits is probably still open for debate. I am not trying to fudge it, I really think there are various options.

  Lord Eames: You see that is part of our problem and that is really why I am probing.

  Q256  Chairman: We can have a view but we have to get our witnesses to tell us. I do not know whether the Royal College of Nursing want to add anything.

  Mr Curry: I would like to add layers to the very comprehensive answer given by Jo. I think there are three levels of responsibility that need to be addressed—and this would be across the European Union. Practitioners who generate and collect the data have a clear responsibility to do so in a consistent way or a way which meets best standards, and there are standards internationally for information and data gathering and so on. There is a challenge there to equip and empower practitioners to gather information, particularly patient-centred information, which I think will be very important. Secondly, providers and commissioners, or whoever is involved in buying and selling and designing the care, have a responsibility again for collecting information but also for presenting it in an accessible way to whichever mechanism hosts this information. Finally, Member States have a responsibility for hosting that information in a way which is consistent in principle across the European Union. The European Union would have, again, a principled role to say the sort of issues that need to be addressed in presenting the information. Member States would have the responsibility for presenting that information in the most accessible way, bearing in mind the different needs and levels of education and access that people have to information generally—the use of public libraries, the internet, leaflets and brochures. Underpinning all of that there would have to be some very comprehensive communication and training and development for people on the frontline. The Confederation are quite right about the role of the GP but, also, of course, the practice nurse is increasingly seeing more and more routine referrals and is increasingly involved in choice. Nurses in that situation would need some very clear guidance about the extent of their role as advocates of choice without making too many very clear recommendations and pushing people one way or the other. You have a layer of responsibilities, therefore, which I think is nicely capped by the Member State presenting that information in a way that is accessible.

  Q257  Lord Eames: Without some sort of protection, a nurse in that situation is going to be extremely vulnerable.

  Mr Curry: Nurses do this all the time. They frequently take complex information and re-present it to patients to enable them to make choices, and not just about formal consent for treatment but consent for different pathways.

  Q258  Lord Eames: The very fact that they are giving that information, obviously in a subjective sense they will be thinking it through for themselves, means they are very vulnerable.

  Mr Curry: We have a system of regulation which gives us—

  Q259  Lord Eames: Thank you.

  Mr Curry: May I quickly address information for health professionals as well, because I think that is a very important part of the jigsaw puzzle? There are two issues for us. Patient information, which needs to be transferred between providers and commissioners across borders and needs to be done safely, completely, and securely, is essential for continuity of care, obviously, and to make sure the patient information on treatment follows the patient. Secondly, there is activity and outcome information which will be useful for commissioners, particularly in a cross-border situation, to make sure they are getting value for money and that outcomes are comparable and useful for the person concerned.

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