Introduction

For the past 25 years, UK cleft lip and palate services have been organised in a centralised hub-and-spoke model and feature highly specialised interdisciplinary team working, a national service specification, a dashboard of key performance indicators and a national audit system (Cleft Registry and Audit Network [CRANE]) with unit-level outcome reporting and accountability.1,2,3 The combined impact of a fundamental restructuring of services following the Clinical Standards Advisory Group (CSAG) report in 1998 and the formation of the world's largest cleft research collaborative has enabled UK cleft care to achieve world-class status, demonstrating the NHS at its most innovative and capable.4 The Cleft Care UK study demonstrated improved aesthetic and functional outcomes following the centralisation of services in 2000 (see Table 1).5,6

Table 1 Examples of advances in UK cleft care over the last 20 years since centralisation
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Funding for UK cleft services has been ring-fenced via a national allocation. In Scotland, Wales and Northern Ireland, national funding for cleft has been allocated within integrated care systems that can be traced back to the respective devolutions from 1999-2001. In England, the funding allocation is set to change with the introduction of integrated care services (ICSs) into the legislature. This opinion article aims to review the historical funding of UK cleft services and consider the impact of ICSs for the delivery of specialised cleft care in the England.

Historical funding of NHS cleft services

At the time of UK cleft service centralisation in 2000, contracts for the 12 newly formed cleft service networks were negotiated on an individual service basis, influenced by regional cleft births. In England, NHS primary care trusts (PCTs) delegated funding responsibility to specialised commissioning groups, but following the 2012 Health and Social Care Act, PCTs were replaced by clinical commissioning groups (CCGs). In this new system, ‘specialised services' (there are currently 154 specialised services, of which cleft services are one) benefited from funding at a national level, overseen by NHS England and NHS Improvement (NHSE/I).19 This means that since centralisation, cleft services have retained similar annual contracts that were originally negotiated from the outset in 2000.

Despite the financial stability over the past two decades, concerns have been raised about the inequity of cleft care commissioning, which was viewed by some cleft service clinical directors as failing to allocate resources according to clinical needs.20 Examples of inequality in cleft care have been highlighted in recent years, including considerable local and regional variation in the funding and provision of cleft-related speech and language therapy and difficulties for adults with cleft to access care.21,22 Furthermore, the COVID-19 pandemic further magnified these pre-existing inequities, presenting additional challenges for post-pandemic recovery.23

Integrated care systems

The Health and Care Act 2022 introduced ICSs into the legislature.24 This reorganisation saw 42 ICSs in England replace over 100 CCGs, with the aim of maximising cohesive high-quality and equal care, which is more responsive to local health needs.25 Each of the 42 ICSs has an integrated care board (ICB) responsible for budget allocation and an integrated care partnership responsible for strategy. The key change is that funding will move to regional, population-based allocations for health care services via delegation to ICBs. It is notable that ICSs have come into statute with little fanfare, yet the detail on specialised services commissioning, which accounts for a significant proportion of the health care budget was only mentioned 20 times in the passage of the bill.26 Subsequently, guidance on specialised service commissioning has started to emerge and evolve.27,28

Cleft lip and palate services are one of 59 specialised services assessed via a pre-delegation assessment framework as being ready to transition to ICB commissioning from April 2023.29 The framework assessed readiness to transition according to six key domains: health and care geography; transformation; governance and leadership; finance; workforce capacity; and data reporting structure.30 During 2023, NHSE/I will continue to commission nationally according to the historical arrangements already in place. From April 2024, nine geographical footprints in England, formed from multi-ICB collaborations, will determine future allocations via a needs-weighted population-based funding formula. These geographical footprints bear resemblance to, but are not the same as, the geographical distribution of the 9 of 12 UK cleft services that are in England (Fig. 1, Fig. 2).

Fig. 1
figure 1

The 12 cleft services in the UK. Nine of the cleft services have their hub centre located in England. County boundaries have been used for convenience, although this is not accurate for all services. Map created in Mapchart.net and used with permission

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Fig. 2
figure 2

The nine geographical footprints in England for the proposed ICB collaborations. These geographical footprints bear resemblance to, but are not the same as, the geographical distribution of the nine cleft services in England. Image used with permission from NHS England30

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There have been reassurances that NHSE/I, through the Advisory Committee on Resource Allocation, will put safeguards in place to ensure the pace of change for funding transitions are appropriate, with the aim of avoiding any dramatic changes. Furthermore, NHSE/I, together with the Care Quality Commission (CQC), have pledged to retain national accountability for specialised services and determine what they need to deliver, giving ICBs the freedom to determine how they deliver it. From April 2023, NHSE/I will establish a delegated commissioning group for the specialised services deemed appropriate for ICB commissioning, which will manage approval of national standards, approve gateways for national transformation programmes and guide support to the nine regional multi-ICB collaborations.

Opportunities

An independent review has labelled ICSs as the best opportunity in a generation for a much-needed transformation of the NHS health and care system in England.31 For cleft services, ICSs may represent an opportunity to improve access and quality of care in areas that have been identified as inequitable by being more responsive to local demographic needs. Rt Hon. Patricia Hewitt identified key principles in making ICSs successful and NHS cleft services have notable strengths in the areas identified (see Box 1).

Threats

Of concern, multiple independent commentators have acknowledged that ICSs have been borne into challenging circumstances, which include post-pandemic backlogs, relative politico-economic instability, staff shortages and NHS industrial strike action.31,32 This is a concern for cleft services as the introduction of ICSs represent the greatest financial upheaval since centralisation in 2000. With so much at stake following documented improvements in cleft care clinical outcomes, it is imperative that the right balance is reached between allowing ICBs the freedom to commission yet ensuring clinical standards are maintained. Box 2 explores the potential threats to the NHS cleft service following delegation to ICBs.

Knowns and unknowns

ICSs have been written into the legislature and cleft services have been identified as ready for delegation. The advantages of ICSs include the promotion of collaborative working to develop responsive care pathways, thus reducing health inequalities and are highly relevant to some of the challenges facing cleft care in the UK today. Yet it is concerning that levels of awareness about ISCs among cleft providers in England are low and many questions are still to be answered.

National and regional cleft care leaders will need to engage with the re-organisation at every possible opportunity provided. Cleft services will need to be flexible and adaptable to the inevitably burdensome structural changes that will incur. To this end, the Craniofacial Society of Great Britain and Ireland has created an ICS hub to raise awareness and help cleft care providers to access up-to-date information.33

Of paramount importance is the need to maintain hard-fought national standards, particularly as ICS changes at all levels permeate the infrastructure of cleft care. The rightful involvement of patients and their families in informing proposed changes to the delivery of cleft services and research should be promoted wherever possible to maintain faith in service users that cleft services are designed with them in mind, while heeding the requirement for financial streamlining. Existing data streams in cleft care, such as the CRANE database, should be prospectively prepared to monitor and publish the impact of the change and their ongoing funding secured. There should be a culture of openness encouraged from all stakeholders about the advantages and trade-offs with ICSs so that we do not look back in another decade with regret.

Conclusion

The delegation of cleft services to ICSs/ICBs is significant as it represents a change to the relative financial stability that has been in existence for the last two decades. NHS cleft services in England have been deemed suitable for delegation but that is not the same as being ready for delegation and a high level of careful preparation will be required at all levels. This will include the design of solid, overarching frameworks with transparent funding strategies at the NHSE/I level, necessary upskilling and capacity building at the ICB-collaboration level, and administrative preparedness at the cleft service level. Short-term disruption will be inevitable, but it is in the interest of both cleft patients and cleft professionals that we work collaboratively to get this right.