Transforming the lives of babies with spina bifida

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Summary Overview

When NHS England Highly Specialised Commissioning sought to establish a service to provide pioneering prenatal surgery for foetuses with open spina bifida, a collaborative procurement project with NHS Arden & GEM CSU was initiated. Based on trust, transparency, and engagement, the cross functional project group successfully co-designed and delivered a service model and procurement strategy to appoint two specialist providers for this complex procedure, including an overseas provider. Six surgeries have already been undertaken, which will have a transformative impact on the lives of babies and their families.


Spina bifida occurs when a baby’s spine and spinal cord do not develop properly in the womb, causing a gap in the spine. The exact cause is unknown, but several factors are associated with the condition, including insufficient folate in the diet or hereditary factors.

In some circumstances, surgery can be carried out to close or cover the spina bifida lesion before birth (Appendix 1). This is extremely complex surgery which involves opening the uterus, closing the open spina bifida lesion then repairing the uterus. Previously up to 10 women from England each year were travelling to mainland Europe for surgery.

The challenge
The challenge was to develop and implement an NHS service model to deliver successful, high-quality outcomes for patients using the newly approved service specification. To achieve this, we needed to select providers offering appropriate quality, expertise and experience; a difficult task given experience across potential centres in the UK was scattered with patients historically sent overseas for treatment. NHS England Highly Specialised Commissioners and Arden & GEM collaborated to establish a cross functional project group and jointly design the procurement strategy for this new service.

Our collaborative approach
We started our collaborative journey by establishing a multidisciplinary project group comprising: clinical advisors, commissioners, procurement and communications leads, experts in finance, contracting, quality, information governance, paediatric neurosurgery and fetal medicine. An international expert in spina bifida surgery (from outside Europe to avoid conflict of interest) provided invaluable input and enabled us to implement global best practice. Two patient representatives actively participated in all stages of the process, keeping patients at the heart of service provision.

We developed relationships with key decision-makers, including national NHS England directors, to move the project forward, with all strategic decisions endorsed by the NHS England Specialised Commissioning Oversight Group.

We jointly developed a Project Initiation Document detailing project scope, objectives, governance, roles, responsibilities, risks, conflict of interests and timescales. During monthly project group meetings, we shared documents and sought input on strategies, issues and procurement questionnaires. The high-level involvement and transparency promoted teamwork and built trust within the group where we comfortably challenged our ideas and assumptions. We were mindful that interactions in person are critical for ‘bonding’, especially when discussing complex matters, but also acknowledged team members were geographically dispersed. To address this, we implemented a balance of face-to-face and virtual meetings.


  • The service specification was developed through engaging a wide range of stakeholders including service users, clinicians and providers and through undertaking public consultation.
  • We hosted a dedicated market engagement session for interested providers to share our procurement intentions and open dialogue. We encouraged questions to improve our understanding of the market and test assumptions. This helped clarify clinical pathways, capacity for cross-cover and clinical competence.
  • We shared procurement tips, case studies and organised a dedicated session to discuss common bid mistakes to give centres the best possible opportunity to make an informed submission.

We co-designed a service model and procurement strategy that promoted collaboration at project level and within the wider NHS. Due to the small number of cases in scope to be operated on each year, the need to maintain expertise, and the short gestational window for surgery, we needed to select an appropriate number of Fetal Surgery Centres (FSCs) to undertake this complex procedure. Following analysis of clinical, financial and market considerations, we developed a lotting model suggesting two FSCs. Collaboration between both FSCs and regional networks was essential for developing and maintaining expertise; a requirement built into the procurement questionnaires and evaluation criteria.

Overcoming obstacles

Timescale pressures
We started working on this project in autumn 2018 under pressure to reach a swift selection as:

  • Patients were accessing surgery from providers in mainland Europe. The prospect of a ‘no deal’ Brexit created uncertainty about future legal and contracting arrangements, which could impact on service availability for UK patients.
  • One UK centre was already performing open prenatal open spina bifida surgery, while others were also undertaking postnatal surgery. We needed to ensure that NHS England had formal oversight over the outcomes and quality for this complex operation.

We set up an ambitious project delivery deadline which we regularly reviewed and adjusted. We had previously agreed an interim policy solution to ensure continued service, while working towards the long-term procurement strategy and final selection of providers before autumn 2019.

Balancing access with expertise
For a surgery of this complexity, finding the right balance between providing care close to patients and maintaining service quality is a challenge. Our ideal service model was to commission two UK centres, however, from our market engagement and intelligence we knew few UK centres had the necessary experience, with some having performed just one prenatal surgery and only a small number having performed more than five postnatal surgeries. To overcome this, we built various scenarios into our procurement to encourage two types of providers to come forward: those meeting the service specification in full and having necessary experience (Full Units) and those that may not meet the full requirement or have the necessary experience but were willing to collaborate and acquire the level of expertise needed (Evolving Units). This process prioritised fully compliant and experienced centres and at the same time encouraged collaborative submissions between Evolving Units. To stimulate future UK capability, we required all providers to commit to working together and sharing knowledge as part of their NHS contract.

Changing mindsets to promote new ways of working

This project has been exemplary in promoting a different mindset when it comes to procurement. It has demonstrated that procurement in the public sector can be used as a tool to deliver strategic objectives with flexibility for tailored processes and encouraging collaboration (Appendix 2).

The process illustrated to colleagues and internal customers that we can use procurement to collaborate and jointly design processes that deliver high quality outcomes. Developing dedicated and robust procurement and lotting strategies has now become the norm in commissioning specialised services.

Outcomes, achievements and benefits

We achieved the project’s defined aims:

  • We appointed centres that demonstrate the achievement of excellent health outcomes, reliable assurance systems and deliver a safe and high standard service
  • Service delivery is well co-ordinated and communicated, provided across established geographical networks and ensures cross-cover
  • Providers are collaborating with referring units and sharing knowledge to build capabilities for the future
  • A framework for continuous improvement in the overall quality of care for patients is in place, with a process for regular review.

Timely project delivery
Thanks to strong leadership and excellent internal and external collaboration, we completed the project in less than one year – from initial discussions to contract implementation. Our effectiveness stemmed from joint aims, strong team spirit, regular meetings, openness to diverse viewpoints and taking full advantage of technology to connect experts. The service started before the planned December 2019 Brexit date.

Balancing expertise, proximity and future capability
For the next four years, women carrying a fetus with open spina bifida will receive high quality surgery from two specialist providers – one in London (UK) and one in Leuven (Belgium). Leuven is a very experienced specialist centre for this type of surgery and, for many women, offers a shorter travel time than to some UK centres.

In order to build future expertise and capability, a wide programme of education has been offered to potential referrers. Referring clinicians and their teams can attend surgeries to increase their knowledge of the condition and build first-hand local experience and expertise.

Robust contracting and information governance
Our cross functional approach enabled us to address the challenges related to selecting a provider in another country with a different legal system. Our expert group ensured inclusion of appropriate clauses for patient data security, information governance and quality monitoring in a bespoke provider contract. We verified the claims in the provider’s submission by organising site visits before the final contract was signed. Outcomes are regularly monitored via weekly contract mobilisation meetings and contract management.

Successful surgeries
The project delivered six surgeries between November 2019 and March 2020 to women in England and Northern Ireland.

 “We were told Max had around a 20% chance of walking with aids but would most likely have no movement or feeling from the waist down and be in a wheelchair full time. Max has absolutely thrived since surgery. He has full feeling and movement all the way to his toes, the fluid on his brain has remained stable and he has full control of his bladder and bowels. We don’t know what Max’s abilities would have been had we not had the surgery, but we know it absolutely gave him the best chance to thrive.”

Carrie, Parent to Max and surgery recipient (Appendix 3).

Stakeholder feedback
We constantly collected feedback from project group members, national directors and wider stakeholders on procurement design, project management and service model (Appendix 4 and Appendix 5). The project team was praised for adopting a collaborative and strategic project management approach, oversight of process, drive for excellence, timeliness, leadership and attention to detail.

Downloads: Appendices 



Finalist : 2020 HCSA Cross Functional Collaboration Award  and  Winner:  2020 HCSA Cross Functional Collaboration Award


Judges Comments

A fantastic account of cross-functional working and a well-written submission.

An inspiring account of cross – EU Member State, cross – organisation collaboration, to produce a uniquely impactful NHS service.


Name: Marie-Louise Allred
Job Title: Marketing and Communications Manager
Organisation: NHS Arden & GEM CSU with NHS England

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