Health and Social Care Bill

Baroness Howarth of Breckland Excerpts

Wednesday 29th February 2012 Lords Chamber

[Baroness Masham of Ilton]

My Lords, I have added my name to Amendment 96. These patients can have very complex and varied needs. Will the Minister give an assurance that they will not fall through the net between the Commissioning Board and the CCGs? There will be a great need to have excellent communication between the Commissioning Board and the CCGs. There is concern, as has been shown here today—and if there is concern here, my goodness, what will be the problem outside when funds have to be found for these patients? I implore the Minister to sort this out.

[Baroness Howarth of Breckland]

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.

[Baroness Hollins]

My Lords, I have been reflecting on the amendment tabled by my noble friend Lady Finlay. I declare an interest as one of my daughters has one of the conditions that she mentioned in her speech.

This lacuna must be addressed because the discretionary powers of clinical commissioning groups to apply the appropriateness test provide no assurance for those with these rare diseases. Today’s debate shows that it is essential that this is addressed in the Bill. I hope that the Minister will be able to suggest a way in which perhaps a government amendment might be able to address this lacuna.