Health Bill

Lord Sharkey Excerpts

Committee stage
Wednesday 11th November 2026 Lords Chamber

[Lord Sharkey (LD)]

My Lords, I will speak mainly to Amendment 74, which is in my name and those of my colleagues, the noble Baronesses, Lady Chisholm and Lady Sater, and I am grateful for their support. I declare an interest as chair of the Specialised Healthcare Alliance—SHCA—a coalition of nearly 140 patient organisations and corporate supporters campaigning on behalf of people with rare and complex conditions. There are 3.5 million people in the UK living with a rare condition, and I have heard at first hand how vital specialised services are in ensuring that they receive the best possible treatment, care and support. The Health Bill before us has potentially significant implications for how these services will be commissioned in future.

Amendment 74’s purpose is simple: to ensure that specialised commissioning, whether undertaken by the Secretary of State or ICBs, continues to be informed by a strong national clinical leadership and specialist clinical advice. One of the great strengths of the current specialised commissioning system is the clinical infrastructure that supports it. There are national clinical directors; national specialty advisers, who are practising clinicians working part-time at NHS England to provide clinical leadership, advice, input and support; and clinical reference groups, which bring together healthcare professionals, patient representatives and other experts to help to design, monitor and improve specialised services. This includes supporting the development of national standards.

As we move towards the abolition of NHS England, SHCA members are asking what this will mean for the future of clinical leadership in specialised commissioning. At present there is considerable uncertainty. I have heard from individuals sitting on clinical reference groups, for example, who still do not know whether their role will exist in a few months’ time. The purpose of Amendment 74 is not to prescribe a particular organisational model. Rather, it is to establish an important principle that the planning, design, delivery and monitoring of specialised services should continue to be informed by clinicians with the relevant expertise.

As commissioning arrangements become more dispersed, national clinical leadership arguably becomes more important, not less. The Government have stated that national standards for specialised services will remain a priority, but it is unclear how those standards will be developed, maintained and monitored without the clinical infrastructure that underpins it today. I anticipate that the Minister will reaffirm the Government’s commitment to clinical leadership, and I would welcome that, but what would provide real assurance to patients and clinicians is greater clarity about how that commitment will be delivered in practice. In that spirit, can the Minister clarify what discussions have taken place regarding the future of national clinical directors, national specialty advisers and clinical reference groups? In general, how do the Government intend to ensure that specialised commissioning continues to be shaped by the strongest possible clinical leadership and specialist advice—and, of course, the patient voice?

I turn briefly to Amendments 57, 73 and 80 from the noble Baroness, Lady Grey-Thompson, to which she has spoken so eloquently. Together, they call for greater security of the delegation of specialised services and clear reporting mechanisms, something that SHCA members have repeatedly called for. The right checks and balances must be in place but currently they are not. For example, under NHS England, delegation decisions have been informed by formal assessments of service suitability and service readiness alongside board approval. No equivalent to this is set out in the Bill. The publication of an impact assessment before any specialised service is delegated to ICBs is a proportionate and reasonable safeguard. Before such a significant commissioning change is made, it is only logical to properly consider factors including patient safety, clinical outcomes and equity of access.

I also support the amendment from the noble Baroness, Lady Grey-Thompson, calling for an annual report on the commissioning and performance of specialised services. The Health Bill allows responsibility and, for the first time, legal accountability for specialised services to move away from the national level and towards ICBs. This makes transparency more important than ever, but a number of important questions remain unanswered.

For example, the Government have stated that there will be,

“enhanced oversight of ICB specialised commissioning to monitor compliance with national standards”,

but how will this oversight operate in practice? Some services have national standards that are more than a decade old or, occasionally, no national standards at all. What is the process for updating these? How will transparency be improved, given the current lack of publicly available data on whether national standards are being met? I recognise that we do not want to overload commissioners and providers with numerous reporting requirements. However, given that there are more than 150 specialised services, accounting for approximately 14% of the NHS budget, a single annual report does not seem an unreasonable expectation.

My questions for the Minister are straightforward. If the Secretary of State or individual ICBs fail to meet national standards, how will we know and what action will follow? In that context, does the Minister agree that existing accountability mechanisms, such as the NHS oversight framework, are nowhere near granular enough for specialised services and that an annual report would fill an important gap in accountability? I look forward to the Minister’s reply.

[Baroness Chisholm of Owlpen (Non-Afl)]

My Lords, feeling invisible, constant uncertainty, high rates of distress, caregiver burnout: these are only four of many problems facing those suffering from rare disease. That is why my name is on the amendments from the noble Baroness, Lady Grey-Thompson, and the noble Lord, Lord Sharkey. We have heard from the noble Baroness, Lady Grey-Thompson, about the importance of impact assessments. I am vice-chair of the Specialised Healthcare Alliance, along with my fellow vice-chair, the noble Baroness, Lady Sater, and the noble Lord, Lord Sharkey, is chair. It plays an important role in specialised services. I support the requirement for an impact assessment before any specialised service is delegated to ICBs. All that the noble Baroness, Lady Grey-Thompson, said makes a brilliant case for this.

I am really concerned that we still lack an overarching assessment of what the Bill could mean for specialised services as a whole. We need to have assurances on how the Government will assess and monitor the cumulative impact of changes on specialised services. I hope the Minister can reassure us on this point.

I strongly support what the noble Baroness, Lady Grey-Thompson, said about the importance of annual reporting. In fact, that is already standard practice in other major areas of the health service—for example, the newly established National Cancer Board. Surely the Minister must see that how important the tool of annual reporting is for driving accountability and improvement in cancer services. In which case, surely the same principle should apply to specialist services.

My name is also on Amendment 74 in the name of the noble Lord, Lord Sharkey, on the importance of clinical leadership. Given the number of people affected and the complex conditions involved, there is a strong case for a senior clinical leadership to provide strategic oversight across care, research and policy. The Future for Rare campaign, which the SHCA supports, is calling for a national clinical leader for rare conditions in each UK nation. Given the Government’s commitments to appoint a dementia tsar and a national clinical head for brain cancer, does the Minister agree that a similar role for rare conditions merits consideration? I look forward to the Minister agreeing to these very small but very important amendments.