Health and Care Bill — House of Lords, 2022-01-11
Topic: Health
John Kevin Sharkey (Liberal Democrats, Centre to centre-left): My Lords, I declare an interest as chair of the Specialised Healthcare Alliance. I will speak to Amendment 6 and 19. I added my name to Amendment 6 and I wholeheartedly support the points made by the noble Baroness, Lady Wheeler, in her eloquent opening remarks. I will make a few brief supplementary points on rare and less common diseases Proposed new subsection (2A)(b) in Amendment 6 refers to waiting times for a rare disease diagnosis and is intended to probe the Government’s ambitions in this area. The Government’s rare disease framework noted that it can take years to receive a final and definitive diagnosis of a rare disease and that some people living with a rare condition may never receive one at all In 2019, the Government’s national conversation on rare diseases found, perhaps not entirely surprisingly, that getting the diagnosis right was the number one challenge in rare disease care. But the process of getting this diagnosis has been called, entirely understandably, an odyssey—many journeys, many ports of call, and many difficulties. This odyssey frequently involves multiple referrals, inconclusive tests and even incorrect diagnoses before a final definitive diagnosis is arrived at The rare disease framework makes a very welcome commitment to making improvements in this journey. I would be grateful if the Minister could say what concrete steps are being taken to bring about the desired improvements to arrive at Ithaca much earlier and in better shape. For example, the rare disease framework talks of a need to improve diagnosis rates. How is this to be measured and what is the baseline to be? Is there a target that the Government are working towards? If there is, when is it expected to be reached? The framework also commits to making use of advanced diagnostics to improve the speed of diagnosis. Can the Minister say what new technologies are being deployed and which are under active consideration? Finally, the spending review announced funds for a new newborn genetic screening programme. What might we expect in terms of a timeline for the piloting of this programme and its wider implementation if the benefits are proven I turn to Amendment 19, in my name and that of the noble Baroness, Lady Wheeler, for whose support I am grateful. We have around 3.5 million people with rare or less common diseases or complex conditions. This number grows as our population ages. Many of these people require specialised treatment of one kind or another. Currently, these treatments are provided by the specialised commissioning team of NHS England. In total, there are 149 specialised services directly commissioned by NHS England, and in 2018-19 £18 billion or so was spent on these services There are some problematical aspects to the large-scale direct national commissioning of this very large range of specialised services. The NHS points to these in its paper of last January, Integrating Care: Next Steps to Building Strong and Effective Integrated Care Systems across England. It said that "these national commissioning arrangements can sometimes mean fragmented care pathways, misaligned incentives and missed opportunities for upstream investment and preventative intervention." The paper goes on to propose a new model whereby the provision of some specialised services can be delegated to be more responsive to place-based needs and local collaborations The NHS proposes that there will be four principles underlying this new approach to the delivery of specialised services. The first is that all specialised services will continue to be subject to consistent national service specifications and evidence-based policies determining treatment eligibility. The second is that strategic commissioning, decision-making and accountability for specialised services will be led and integrated at the appropriate population level. The third is that clinical networks and provider collaborations will drive improvement, service change and transformation across specialised and non-specialised services. The fourth is that funding of specialised services will shift from provider-based allocations to population-based budgets, supporting the connection of services back to base Amendment 19 is a probing amendment to allow us to ask a few detailed questions about how these principles will operate in practice. The first is to do with the ability of ICBs to commission specialised services in line with ongoing national standards. How will this ability be assessed, and by whom? Can the Minister confirm that being judged to have the appropriate ability will be a transparent decision and an absolute condition of delegation? Following this, can the Minister also confirm that there will be at least an annual published review of ICBs’ performance in the commissioning of these specialised services? Can the Minister tell us what the circumstances are in which such a delegation of specialised commissioning may be withdrawn? What is the legal mechanism for doing that? Finally, there is the question of money. How can we be sure that the appropriate funds are spent by ICBs on specialised commissioning? Is a ring-fencing of funds being considered, for example I close by noting the many successes of the NHS specialised commissioning group and its frequent and very welcome engagement with patient groups and the Specialised Healthcare Alliance.