(5 years, 12 months ago)
Public Bill CommitteesQ
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.
Q
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.
Q
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.
Q
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.