(12 years, 9 months ago)
Lords ChamberMy Lords, I, too, would like to press the point about the neutrality of the cost that the noble Baroness, Lady Meacher, has stressed. If I may say so, I think that we all owe the noble Baroness, Lady Meacher, a huge debt for the way in which she has pursued these issues and, equally, for the way in which the Minister has responded. I hope very much that when he is considering again, he will bear in mind the number of women—and it is women, I am afraid—who are on their own left to cope with children in this situation. That is a particularly important point, I would argue.
My Lords, I had not intended to contribute to this debate, but I wish to speak briefly. As a neurologist with a long experience of caring for children with many forms of disability, I am fully aware of one important issue: that the nature of the disability may be relatively non-progressive—for example, in patients with cerebral palsy. The needs of children with cerebral palsy vary and change as they grow older. The problems faced by their carers—often a single parent, or both parents—become more demanding as the child grows older and is heavier and more difficult to manipulate.
As the noble Baroness, Lady Thomas, said, think again about patients with muscular dystrophy of the most severe kind. Boys with Duchenne muscular dystrophy, by the time they are seven, eight or nine years of age, are still mobile and still go to a normal school but walk with increasing difficulty. By the time they are 10 or 11, they are often confined to a wheelchair. In past years, many of those boys died in their teens. Nowadays, with vastly improved care, with improvement in their respiratory support and so on, they pass through that period of transition from childhood into adulthood, where their disability is greater and more demanding. Unless they are given proper support by carers and the support that they need in terms of respiratory support and suchlike, the demands on their parents become much greater. Furthermore, it is important to recognise that proper care and support in the home prevents a large number of emergency admissions to hospital, with major burdens on the National Health Service.
I was reassured at the beginning by what the Minister said. Can he assure us that the actual mechanisms of these three grades of support, and that important change from childhood into adulthood, are properly met by the provisions of this Bill? Will he also assure us that the recognition that disability is not static and that demands on the carers vary is fully taken account of in the decisions that are being made?