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Health and Social Care Bill

My Lords, I wish to add my voice to the need for clarification, as raised by the noble Baroness, Lady Finlay, between the services provided by the national and regional boards for rare diseases and conditions. I declare an interest as a patron and trustee of an organisation that deals with children with hypoplastic left heart syndrome and some similar conditions of right heart defects. As the Minister will know, a recent Safe and Sustainable review has been looking at how those services should be delivered. Obviously the complex surgical procedures need to be carried out in specialist hospitals, but the aftercare very often takes place locally. The Safe and Sustainable review having stalled during the discussion about this Bill, parents are extraordinarily concerned about how that will be taken forward. I say this as an example but it is true of all families who have children or adult relatives with rare conditions that they want to be absolutely assured that the right service is commissioned at the right level, and need to know how that assessment is going to be made. At the moment it is extraordinarily unclear and I think that is why the noble Baroness, Lady Finlay, has tabled her amendment and the other issues have been raised. All I am seeking is that clarification, partly because I have got to go and tell the parents this weekend at their AGM.