My Lords, I thank the noble Lord, Lord Sharkey, for opening this important group and moving Amendment 106, to which my noble friend Lady Thornton added her name. As he explained, the substance of this amendment was singled out by the Constitution Committee and highlighted by the Delegated Powers and Regulatory Reform Committee. I reinforce the Constitution Committee’s endorsement of the DPRRC’s recommending the removal from Clause 20 of the imposition of legal liability merely by publishing a document. We agree with the two committees that this is a necessary amendment, and I look forward to hearing from the Minister how these concerns will be addressed.
Somewhat paradoxically, Amendments 143 and 144 strengthen the powers of NHS England in its quest for top-down management and imposition. However, they sit within the wider context of describing how NHS England would be able to give directions to integrated care boards under Clause 20 and improve these provisions, so we support them.
The remaining amendments on NHS Continuing Healthcare underline how vital it is to address this urgent issue, although it is not central to the intentions of the Bill. I thank the noble Baroness, Lady Greengross, for ensuring this focus in the debate and for Amendments 133 and 139, which ensure that this crucial issue is specified under the ICB’s duties and included in its annual report and performance review accountabilities.
Today, we heard in detail about the widespread concern about and scale of the problems with the way in which the NHS Continuing Healthcare scheme works and is funded, and the arguments it leads to about who pays for what, as a shared responsibility between the NHS and local government. Patients and their carers feel they are the sideshow, not the central focus of concern, and are deeply traumatised and upset by the whole experience.
As a carer of a disabled adult myself, like my noble friend Lady Pitkeathley, I know, from meeting many other carers and their loved ones, their deep concern about this. The three things that cause most concern and upset, which one hears time and again, are, first,
the huge problems with inadequately funded social care packages—or their absence—to meet basic care needs, and deep worries and anxieties about how the care cap will operate; secondly, the trauma of the discharge-from-hospital process for carers and their loved ones, which we will discuss later; and thirdly, NHS Continuing Healthcare, the postcode lottery of whether your loved one receives it or not, the huge bureaucracy around the application and allocation process, the long wait for a response and being stuck in the middle of an NHS local authority fight over funding. As the noble Baroness, Lady Finlay, stressed, there is an urgent need to tackle the accountability gap in this process.
NHS Continuing Healthcare is the absolute manifestation of what our Economic Affairs Committee report on the “national scandal” of social care funding called the “condition lottery”—in other words, the wide disparity between health conditions for which people receive healthcare that is free at the point of use and those for which users usually have to make a substantial contribution with “catastrophic costs”, in the committee’s words. As we heard today, dementia is the condition most cited in this regard, but many of us know of cases where people with motor neurone, Parkinson’s and other degenerative diseases have struggled to get NHS Continuing Healthcare funding, either for home care or support in residential homes.
We support Amendment 161, which ensures that the Care Quality Commission reviews must include this issue. However, I am unclear—and may well learn in a minute from the Minister—what role the CQC currently has in looking into all continuing care matters which traverse NHS and local authority boundaries. However, we support its involvement.
The amendment would also ensure that the CQC reviews include looking in depth at how NHS Continuing Healthcare is working under each ICB. That will mean that at last we can begin to develop the much needed strategic overview of this crucial area for thousands of people in desperate need of care and support.