| Previous Section | Index | Home Page |
I was interested in my hon. Friend’s suggestion that screening was not expensive and that the existing bloodspot could be used to test for another condition. However, as he would accept, that would be only the start. Even if the case were made—and we are not at
that stage—it is not only the cost of the test that we must take into account. We would need to ensure that all the right equipment, staff, training and counselling arrangements were in place. Commissioners would need to be ready to roll out a new programme. We would also need to be satisfied that screening was the best use of resources for patients and their families.
The use of the bloodspot has already been extended to test for other conditions. I hope my hon. Friend will allow me to take some quiet pride in the roll-out of the newborn sickle cell screening programme across the whole of England and the steady implementation of screening for cystic fibrosis. Both those programmes use the bloodspot.
Leukodystrophies nevertheless offer us a great challenge and I do not want in this debate to underestimate that. We do not know enough about these progressively disabling, life-threatening and limiting diseases, or about how they may be cured or held in check. But that cannot ever be an excuse to do nothing. We have heard today and on previous occasions inspiring accounts of families dedicating their lives to their children. Therefore, it is our job and duty to give them all the help we can.
The national service framework for children, especially the standard on the disabled child, outlines how we may best enable and promote health services for children with life-threatening illnesses and their families. Care is needed from birth or diagnosis through to death and in a variety of settings—home, school, hospital or hospice—to enable the child or young person to live as normal a life as possible, for as long as possible. As my hon. Friend will be aware, we recently announced a grant of £27 million over three years to support children's hospice services while we develop a longer-term funding strategy.
I would like to conclude by stressing two points. First, we will of course keep the door open about newborn screening. It is my intention to ask the UK National Screening Committee to keep these conditions under review, especially when new evidence becomes available. Secondly, I would not want any of these children or their families to be treated unfairly or insensitively or to be overlooked. They are entitled to first-class support and as the Minister responsible I am determined that that should happen.
Today I give my hon. Friend and the families concerned a commitment that we will work with them to look at how we can improve the range of support that the health service and social care system have to offer families in these circumstances. As I said, we do not close the door today to the screening option, but given the criteria that apply to policy on screening, we need further evidence to justify taking a further step forward.
Again, I congratulate my hon. Friend on securing the debate. I hope that he will continue to raise the profile of these issues in the House, and I look forward to continued dialogue with him and with representatives of the families affected, so that we can ensure that we do our best for those concerned.
Adjourned accordingly at twenty-four minutes past Six o’clock.
| Index | Home Page |