I am most grateful to the noble Baroness, Lady Morgan, for tabling these amendments and starting this debate, because these three amendments are very different.
I welcome Amendment 17. Of course we should consider the devolved Administrations because of all the cross-border flows. As we have just heard, people move around the UK. We have a lot of patients from Wales—I should declare my interests; I will not list them all in Hansard, but I have various roles in Wales and have done various things with IT in Wales as well—who routinely go into England from across north Wales; and in south and mid-Wales, they go across to Hereford and Shropshire. So I say to the Government, please make sure that you do always consider the impact.
We need patient-based clinical information that flows between different systems in a timely manner. The noble Baroness, Lady Fraser of Craigmaddie, referred to patient-held records. I hate to disappoint, but we did a quite extensive research project on them and found that there were all kinds of problems with them, one of the main ones being that, when the patient turned up in ED, they inevitably did not have their record with them—or they did not want things written in it in case somebody else in the family saw them, and so on and so on.
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Here, I must have a bit of a boast about Wales because we are years ahead of other places, certainly of England. I think Scotland is also ahead of England here. For over six years now we have had a shared care record through the Welsh Clinical Portal. That means that wherever you are in Wales your primary and secondary care data can be instantly accessed through the shared portal. That extends out into voluntary
sector providers such as hospices, which have all been provided with secure routers. There are over 30,000 users and this extends also into the ambulance service and the out-of-hours advisory service.
This is not read-only. This has read and write functionality and is extremely secure. There have been very few breaches and there are very clear codes to make sure that people do not inappropriately access a record. On the system there are over 30 million care records, 200 million test results and over 3 million GP summary records. There has been backloading of historic records, including the all-Wales cancer records systems, of which there were—I would have to say—two and a bit because there were two main ones and another one. The GPs have all come on board as well to simplify their systems to bring it all in. That figure of over 3 million GP summary records is important because I remind noble Lords that the population of Wales is just over 3 million. That gives an idea of the completeness of the system.
When a patient is offered treatment available in England but not in Wales there is another issue: cost recovery. This is negotiated on an individual basis. A difficulty arises when the suggestion is that English demands are imposed on the devolved responsibilities through imposed interoperability of data and collection of healthcare statistics across the UK. This undermines the devolution settlement and, sadly, opens the door to politicising the use of official statistics. I will go into that now.
Amendment 301 would specify binding data standards across the UK. However, because health is a devolved responsibility, there is a problem if the Secretary of State is able to make decisions affecting Wales that are outside the reserved areas; decisions can be made in reserved areas, such as over human tissue. It is not acceptable for the Secretary of State to, in effect, grab powers or impose into a devolved area. This can be done on a voluntary basis by UK health performance outcomes observatories, with negotiated arrangements for data sharing on the basis of mutual consent. However, I suggest that it should not be in primary legislation. There is already a concordat on statistics that sets out how the four nations will work together to produce comparable statistics and the code of practice. For statistics, this ensures that their content, timing and method are free from political interference.
The second problem is that data interoperability is much broader than statistics on performance and outcomes. I have already illustrated that there is benefit to patients from data interoperability at the health record level. We have it for the whole of Wales and it works incredibly well. However, we need data interoperability between England and Wales, as has already been outlined, because of the problems for individuals where there is relatively high traffic across the border, covering cross-border referrals specific to patient care. There is already a project to address this with NHSX and all the trusts that border Wales, making good progress on a voluntary co-operation basis, so direction from the Secretary of State is not needed. I gather too that NHSX is a bit behind, and an audit showed that 37 out of 42 ICBs had a shared basic care record in place—the remaining five did not
—but there was not adequate interregional connectivity. This connectivity has been an ambition since 1990 so there is a serious lag in making this happen, for a variety of reasons.
Amendment 205 reveals the funding differentials between the four nations, in large part because of the Barnett formula, which works against Wales and does not solve the problem. Wales has a higher burden of illness, mainly because of demography. We have a more elderly population. In terms of equality, we are relatively less prosperous, which drives social determinants, as we have already discussed today, and different behaviours.
An additional factor is that people want to retire to Wales. We welcome them. They come for positive reasons. Having been in England while economically active with relatively little healthcare need, they come to Wales, and they age and need more health and care. I was interested to see that the examples given related to degenerative disease; hips and knees give out as people get older. So, we have a bigger burden, but we do not have the funding, and that is a problem.
The need/demand burden is objectively different, and Barnett has never been a needs-based formula, yet funding determines what can and cannot be provided. Workforce supply depends on UK training quotas, and higher training placements across the UK. Much of this is outside of Wales’s control. To give just one specific example: in critical care, there are shortages in the allied health professions. They are everywhere, but they are worse in Wales—well below the recommended levels for critical care in the UK. Without the money to employ the staff and without the supply of those professionals, we are stuck. We would gladly employ them if we could. The ability to manage patients will not be improved until we make sure that the funding is looked at, addresses need and recognises some of these demographic differences.
I strongly welcome Amendment 17 and say “Please take notice of the devolved nations, even though the populations are smaller”, but there are, I am sorry to say, real problems with Amendments 301 and 205, and I hope the Government will come up with a solution and make sure that we have the health service that Aneurin Bevan wanted to instigate, which was for everybody at the point of need.