My name is Fiona Loud, and I am the policy director for Kidney Care UK. We have been around for over 40 years and were formerly known as the British Kidney Patient Association. We are the national kidney patient support charity, so we give emotional, financial and practical help to patients and their families who are affected by kidney disease, but particularly kidney failure.
Q Good morning and thank you for coming. I am particularly keen to hear evidence from you about how the current reciprocal arrangements work for patients with high needs and complex arrangements. It would be very helpful to hear how you think the current arrangements work.
At the moment, 29,000 people in the UK are dependent on dialysis. That is three times a week, about five hours at a time, and those people cannot miss a session, because those sessions maintain their life. If a person is on dialysis and wishes to travel—anywhere in the world, but let us talk about the EU here—whether to meet family, to have a holiday, or to work, they need to be able to pre-book a slot or slots at a dialysis unit that is convenient to the place they are travelling to. At the moment, the EHIC card either covers it completely or, in countries where there is a co-payment because local residents make a co-payment, it covers the bulk of your care. Many patients tend to go to places such as Spain and France, and some go to Italy, because they are holiday-type destinations. It works for them because they get the EHIC, are able to get their life-maintaining treatment and have the opportunity, for themselves and their families, for a much-needed break. That is an example of one of the main reasons people might use that.
So it works well at the moment. It is not completely perfect because sometimes units that were public become private and it may occasionally happen that someone has booked a holiday a long way in advance. But, in general terms, it means that people are able to go away with the confidence that they will be able to be supported and receive the treatment they need.
For people with a pre-existing condition, such as kidney failure, we always advise that they take out insurance in addition to having a current EHIC card, because there will be situations in which they may need to cancel their travel at very short notice due to illness. What we regularly hear from patients—this is probably one of the most common questions asked on our closed social media forums, especially at holiday time—is, “Where do I book? Where do I get insurance from? Where do I get the best deal?” My understanding is that some people go to specialist insurers to get their cover—they will be those that we tend to recommend to people because they are much more likely to understand and to be able to support these complex conditions. Whether everyone gets insurance, I honestly do not know. Some people will say that it is so expensive that they cannot afford it, and that could put them off travelling. Other people will say that they have incredibly cheap deals, and I do wonder whether those would actually cover the situation of someone really needing care.
Let me give you a recent example of someone who booked a holiday a year in advance, not in the EU but further away. They took out specialist travel insurance and during that time their transplant failed, which meant that they became dependent on dialysis, were particular ill and had to cancel the holiday for them and all their family. They were able to get all their money back because they had given a clear declaration and that had been accepted. That is how it should work, and it was some comfort to them in what was not a very good situation.
We have people who are taking the option to travel now because they have no idea what will happen after
We understand the reason for it and we support its intentions. You may have seen some of our comments: we want more assurance, some more detail and some things about contingency as well but, yes, we have been hoping for some time that something could be put in place to set this process in motion.
Q I know that you and my colleague, the noble Lord O’Shaughnessy, have had a discussion. Could you tell this Committee what the contingency issues you refer to are?
The contingency issues would be for people who have holidays already booked for after
The second question will be about emergency cover. I have just given an example of somebody who was fine when they booked the holiday but who now may not be fine, because people’s health state can change. Generally speaking, holidays are booked in advance. It is basically about looking at what the immediate arrangements would be and to make sure that no citizens are caught in the gap of assuming they have cover and somehow not realising that things have changed. There is an awful lot about Brexit at the moment and this is a very specific detail in a much noisier environment. Those are the people who might be caught out and whom we are concerned about.
Q Finally, without putting reciprocal arrangements in place, as this Bill intends to give the Government the powers to do, presumably it would make it more or less impossible for your sufferers to travel.
Yes, it is our conclusion that it would be very hard. It is worth mentioning that at the moment it is generally easier to obtain dialysis at a unit away from your home in Europe than it is in the UK, because we have a heavily pressed NHS. Trying to get capacity in other units is possible with a lot of planning, but if you want to travel for a funeral or for something at short notice, it becomes very difficult to go away for more than one or two days in between dialysis sessions. NHS staff will help and do their very best, but it is easier to go away for two weeks in Europe and take a break in that way than it is to get two weeks in a UK unit, unfortunately.
Q It is alarming to hear about some of your members seeing the expiry date on their EHIC card and assuming that carries—
Q It is perfectly understandable: why would they not assume that? Are you aware of any publicly available guidance to warn people that that date may not be absolutely set in stone?
Q Obviously, we hope that we do not need to get into that situation. Do your members plan things quite far in advance because of the need to get the right treatment?
That is what many people would do, for the very reasons we have given. We have people who are sometimes thinking about two years in advance. If you have kidney failure, it may well be that your income is quite limited. If you are spending three days a week in hospital and you are not particularly well, you would be likely to plan a long way in advance, because it is so important. As a charity, we give grants to kidney patients to be able to go away and have that break, so we hear quite a lot about it from various patients. Some can be up to two years in advance; others will be at shorter notice.
Q Good morning and thank you for coming along to help us. I want to ask about a couple of things. The aim of the Bill is to provide the confidence that we have talked about, to mirror as far as possible the reciprocal arrangements that we already enjoy. However, it does give the Secretary of State the authority to enter into any number of differential agreements with individual EU states. Do you have concerns about that? If we were in this situation—I hope we are not—the Bill empowers the Secretary of State to do that. What would be your view be on the arrangement with Spain being one thing and that with Italy another, and so on?
Although we completely understand the need to be able to have the latitude to make bilateral arrangements for everyone’s benefit, from a patient point of view we would like to see a simple arrangement that is the same across all countries. People will not be sitting in these Committees or reading these Bills in great detail. They simply want to be able to go away. They know how a system works at the moment: they will perhaps turn to somebody in their own NHS unit, or they will turn to us or to other specialists, and ask, “How do I go ahead and book my holiday?” and they will assume that, because they have that card, that is how it will be. That would be our wish and our preference, but we understand that that is not always possible.
If I may make a separate comment about Northern Ireland, there are potential issues there that are nothing to do with holiday but are simply about residents who are used to going across the border day to day for their care and treatments. There are pre-existing arrangements and protocols there. For example, somebody might be on dialysis in Northern Ireland but, because the rest of their family live in Ireland—it is only 10 or 15 miles away—they might be planning to retire there in a year or two and assume that they can just carry on having their dialysis there.
The provision exists for people who live in Northern Ireland to be listed on the Irish organ donor register—you can only be on one—and vice versa. They will need to look at where they are registered. Does that change immediately? There are also other arrangements for organ sharing. If an organ is donated in one of those two jurisdictions and the weather is too bad to take it to the mainland, it can be taken across by road. That is not used very often, but those are just a couple of examples of some of the detail that might affect people. That is to do with healthcare but it is also separate. There may, therefore, need to be some other bilateral arrangement for Northern Ireland, which is separate from the more general one that we have just discussed.
Q Thank you, that is very helpful. Could I just ask you one more question about costs? You rightly made the point that, if somebody is attending for dialysis three days a week, they are likely to have lower income than average. If it is not possible to continue something similar to the EHIC card, are you concerned that transferring extra costs to insurance premiums is going to make travel virtually impossible?
We are. A dialysis session in the EU would cost between €250 and €350, so that is about €1,000 a week. We have had correspondence with Sabine Weyand, who is the deputy chief negotiator for exiting the EU. She confirmed to us that British nationals would be treated as third-country nationals, in the case of no negotiation being in place. Therefore, our conclusion is that for third-country nationals, those costs that I have just referred to would be applied. Therefore, only people who were able to afford that, alongside a higher insurance policy—which would not cover the dialysis, though it would cover other things—would be able to travel, effectively making it out of reach for most patients, unfortunately.
Are there any more questions from the Committee? If not, I thank you very much for helping us with our deliberations today. That concludes our oral evidence-gathering for the Bill. The Committee will meet again on Thursday