Healthcare (International Arrangements) Bill (First sitting)

Julie Cooper Excerpts

Committee Debate: 1st sitting: House of Commons
Tuesday 27th November 2018 Public Bill Committees

[Justin Madders]

Q Have you looked at what the possible impact might be of a no-deal scenario on increased demand on services if, for example, pensioners currently living abroad came back?

Raj Jethwa: We are familiar with the research that the Nuffield Trust has done on this, as most people are. Our members are very cognisant of this. I know the Committee will be familiar with the figure of approximately 190,000 UK pensioners who may require access to healthcare facilities in the future if the S1 arrangements do not remain in place. We have concerns about that. In particular, if the arrangements do not remain in place in the future, those people may need to access healthcare facilities back in the United Kingdom. That would be a concern in terms of doctor and clinician numbers and beds, and the tight financial resources that the NHS has to work under at the moment.

[Julie Cooper (Burnley) (Lab)]

Q Good morning. Mr Henderson, you mentioned the protections around personal data in the Bill. Do you feel that the Bill gives enough protection? Are there enough controls in the Bill?

Mr Henderson: As Raj says, this is an enabling Bill, so it is slightly hard to say whether there is sufficient protection there or not. Clearly, it is a hugely important issue that needs to be fully addressed. Equally, we would say very strongly that, while individual patients’ data must be protected, the free flow of data and exchange of information are absolutely crucial. We should never forget that side of the equation: properly and safely sharing anonymised data for research purposes, clinical trials and so on is crucial. While it is absolutely essential that we ensure that personal data is protected, I would put more emphasis on that other side, which is ensuring that we continue to share and benefit from the exchange of anonymised data for purposes that benefit the health service and research.

[Julie Cooper]

Q Thank you. Mr Jethwa, would you like to comment on the same issue?

Raj Jethwa: It is important that an agreement can allow a seamless operation, but there are some well-established ethical principles and safeguards in relation to this. First, it has to be relevant data and it has to be accessed on a need-to-know basis, and only when it is in line with patients’ expectations. Data sharing has to be transparent. We would be absolutely concerned that any safeguards meet those criteria and principles. I do not think the details in the Bill make that clear at the moment. We would like to see more clarity and detail about that in future.

[Maggie Throup (Erewash) (Con)]

Q Mr Jethwa, when you look at the current regulations, do you think the powers in the proposed legislation are proportionate?

Raj Jethwa: We would like to see much more emphasis on scrutiny of all the discussions in the arrangements going forward. There are some negative procedures—I think that is the term. Given the weight of the issue and the number of people that could be affected by it—I have mentioned the 190,000 UK pensioners who live abroad at the moment, but there are close to 3 million people from the European Union who access healthcare in this country, and there are many more than that who travel across the European Union at the moment—there probably needs to be greater scrutiny of any arrangements going forward.

--- Later in debate ---

[Justin Madders]

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?

Fiona Loud: 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.

[Julie Cooper]

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?

Fiona Loud: 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.

[Julie Cooper]

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?

Fiona Loud: 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.

[The Chair]

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 29 November at 11.30 am in Room 12, when we will commence line-by-line consideration of the Bill.

Ordered, That further consideration be now adjourned. —(Wendy Morton.)