Down Syndrome Bill — House of Lords, 2022-03-18
Topic: Civil Rights
Lilian Pauline Neville-Jones (Conservative, Centre-right): My Lords, I speak on this Bill because of my membership of the all-party group and my strong interest in genetic conditions. I have a godson now reaching maturity who has a genetically-based severe learning disability which is not Down syndrome, and whose parents have had to fight hard for the whole of his life for access to the provision of services, particularly social and educational, which the rest of us take for granted will be available to us as and when we need them As the noble Baroness, Lady Hollins, said in introducing the Bill, its aim is to improve the provision of services and bring to an end discrimination in practice against individuals with Down syndrome—of course, we know that it is not actually legal to discriminate; the issue is what happens in the real world. And who would not wish to see this happen? If you or your child has Down syndrome, the Bill offers real hope. However—I am afraid that there is a however—this prospect has given rise, not in this House, where I recognise that the Bill has received a warm welcome, but outside to divergent and worried views about the Bill’s merits and about the desirability of it reaching the statute book. On the one hand, there are those who argue—if I might say so, I think that the noble Lord, Lord Wigley, represented this view—that, while the Bill is exclusively concerned with Down syndrome, it will in practice open the door to people with other genetic conditions getting better treatment than is currently the case. "Better to start somewhere than do nothing", especially as, in a Private Members’ Bill, the scope has necessarily to be narrow. I do not dismiss any of these considerations, nor do I dismiss the argument, but in a hard world it does not offer any guarantees of success On the other hand—and I am afraid that this is where I tend to stand—there are those of us who see the great danger that this Bill, which uses the device of guidance which has to be followed, to give preference in the provision of services to those with Down syndrome, with the possible result—indeed, the likely result—of those with other, less well known but equally disabling genetic conditions being denied equality of access to provision and becoming worse off than before, because funding is limited and unlikely to increase in the foreseeable future. My noble friend Lord Farmer set out in detail, with eloquence that I cannot match, that this is not a tiny minority but an increasing number of people with other disabling genetic conditions, some of which are very severe indeed, who are not included in this Bill What are the consequences of one group, on the basis of a pretty traditional categorisation of diagnosis being favoured, being preferred, while a large number of others are left out of account? It could give rise not to the idea that this is just a door-opener but that this is discriminatory and divisive among a community of people who face the same challenges. That would be a pretty undesirable outcome, were that to occur, dividing people with genetic conditions between sheep and goats. I put it pretty starkly because we cannot hide from the realities of life, which is that there is not enough money. That is where, if some are preferred, others are likely to get less I search for possible ways forward. In Committee in the other place, the Minister said something to the effect that the Government recognise that people with genetic conditions other than Down syndrome experience problems similar to those with Down syndrome and will therefore consider the overlaps and linkages between such conditions and Down syndrome, through the consultation on the development of the guidance. Your Lordships can see where I am driving. Clearly, the wording of the guidance is crucial because it is a directive to those who implement it, and therefore what it says will be followed. I take a commitment to consult on the terms of that guidance seriously but, given the potentially dire consequences for those outside the zone of preference, such a commitment is not, by itself, enough to quell my doubts about the desirability of this Bill reaching the statute book. It promises a process but not an outcome The timetable is now short to decide the fate of this Bill, so I appeal to the Minister. I hope that when he speaks, my noble friend, who appears to be backing this Bill, can offer some comfort on the score of non-discrimination between genetic conditions, regarding access to funding, based on fair assessment of real needs. I do not often agree with the noble Baroness, Lady Bennett, but she was right on the money in that the issue is assessment of real needs; it is not between one category of diagnosis and another. I hope that the Government provide us with some way forward to guarantee non-discrimination. Will the Minister be willing to issue instructions, if necessary, to prevent discrimination between people with Down syndrome and those with other genetic conditions In 2022, this House cannot pass laws which we have reason to believe would have discriminatory effect. If we do, we can be sure that, after passage, our legislation will be challenged in the courts by an aggrieved party. I am sure we all agree that it would be best to avoid this. I look forward to hearing from my noble friend either now or, if he needs to consider the matter, before we are in Committee, on what the Government have in mind to avoid discrimination by category of genetic diagnosis and instead promote access to provision of services based on assessment of real needs.