Whose voices count in NICE's 2026 Fertility Guideline?

PET (the Progress Educational Trust) recently held a public event about the newly updated Fertility Guideline published by the UK's National Institute for Health and Care Excellence (NICE) (see BioNews 1335). The updated Guideline, published on 31 March 2026, aims to improve the assessment and treatment of fertility issues in England and Wales. It has significant implications for NHS patients, Integrated Care Boards (ICBs), and clinicians delivering fertility care.

During the PET event, panellists were asked whether the patient voice had been adequately represented in Guideline development. Speakers highlighted some successes of patient and public involvement. Guideline committee member and consultant gynaecologist Dr Raj Mathur, for example, noted how patient input influenced the new endometriosis-specific guidance. But rather than deeply interrogating the structural limitations, the panel largely concluded (with caveats) that this aspect of Guideline development had been a success.

Having spent three years studying the politics of NHS-funded IVF in England, I found this puzzling. In my view, NICE's process is tokenistic. It favours those with resources, narrow forms of expertise and politically convenient concerns.

Who got to speak, and who didn't?

One route for involvement was a written consultation. Registered stakeholders could submit comments in 2022 and in 2025. The 2025 consultation attracted an unusually high response – 410 pages of comments from 43 registered organisations spanning patient bodies, NHS commissioners, clinical associations, academic institutions and commercial actors.

Share of 429 total comments submitted by 43 registered stakeholders in the NICE 2026 Fertility Guideline Consultation, September/October 2025

The responses were dominated by highly specialised clinical and scientific commentary, rather than patient experiences or views. Only five patient organisations offered responses to the draft fertility Guideline. Given that approximately 55 third-sector stakeholder organisations were registered to comment, this may suggest that most of them did not have the resources, capacity or time to contribute within the narrow six-week window.

NICE also requires that local and regional organisations participate through a national representative body. Individuals cannot take part. The structural effect is to filter out marginalised perspectives.

The same rules that excluded individuals and underresourced patient organisations seemed to benefit commercial actors. On p378 of the collected responses to NICE's 2025 consultation, Univfy – a Californian health tech company – used one of its 21 comments to propose a public-private partnership to implement its AI prediction software across NHS fertility centres. A critic might ask why this pitch sits alongside responses from patient organisations, public bodies and professional associations, particularly when individuals affected by fertility issues have a slim slice of the pie.

Another route for patient voice was membership of the Guideline committee itself, where three lay members sat alongside clinical and professional experts to represent patient perspectives. Out of fifteen members in total, this already signals whose expertise is privileged by the process.

The also issue goes beyond numerical imbalance. Lay members are typically experienced patient advocates, accustomed to navigating institutional structures. They learn to speak the technical language of health policy, and they can take on significant, often invisible, labour. They may hold disruptive views, yet it appears that these rarely shape evidence gathering or guidance direction.

Meanwhile, the 'ordinary' person living with fertility problems is absent. Those unable to take time off work – who may distrust the medical system, or are simply unaware that such processes for patient voice exist – are not in the room. Expecting three individuals to represent the full diversity of fertility experiences across class, race, sexuality, disability and differing encounters with healthcare is not meaningful inclusion.

Problems with using a predesignated scope

Giving someone the chance to contribute is not the same as acting upon that contribution. Complex, socially significant issues raised by stakeholders were ruled out before consultation even opened.

Take, for example, the contribution from Anthony Nolan, a charity that matches stem cell donors with people who need lifesaving transplants for blood cancer and blood disorders – patients whose treatment can significantly affect fertility. On the first page of the collected responses to the 2025 consultation, Anthony Nolan highlights that there is currently no provision for NHS-funded fertility testing, or specific fertility guidance for people who have undergone blood cancer treatment. The Guideline developers thank the charity for its input, but says that these issues are 'not within the scope of the Guideline update, so no comment has been made on this.'

For the clinicians supporting these patients, and for the patients themselves, this procedural dismissal has real clinical consequences. A population with complex, treatment-related fertility needs is left without Guideline-supported pathways for care.

Clinical framing as a political choice

Clinical and scientific input will always be integral to NICE Guideline development. But the Guideline developers do not only make decisions about treatment effectiveness; they also make value judgments about whose reproductive needs are within scope.

In 2022, in the Women's Health Strategy for England, the UK Government stated that female same-sex couples should be able to access NHS-funded fertility services 'in a more equitable way'. According to NICE's own initial scoping workshop, most consulted stakeholders agreed that the current definition of fertility problems is outdated and does not adequately cover same-sex couples. Disappointingly however, the final scope for the Guideline update still puts sharp bounds around the Fertility Guideline, limiting guidance to health-related fertility problems.

A broad range of patients have issues accessing fertility services, including those who are in same-sex relationships and single women (see BioNews 1277). As the NICE fertility Guideline is used by commissioners, this restricted scope has a direct knock-on impact on which services get funded. ICBs decide on fertility care eligibility criteria for their local area, and draw upon NICE's clinical definitions to define bounds of access.

Several ICBs require couples to self-fund multiple expensive rounds of artificial insemination (see BioNews 1121). A recommendation from NICE that actually addressed what the Guideline developers refer to as 'social or personal situations or scenarios' (in several of their comments on responses to their 2022 consultation) could enable same-sex couples to access NHS fertility help, or at least would enable commissioners to engage with authoritative guidance on this area. Constraints on scope are necessary for steering the Guideline process, but it remains a legitimate question why social dimensions are consistently sidelined.

What could meaningful involvement look like?

As stated in the UK Government's Renewed Women's Health Strategy for England, listening to people and acting on their experiences is fundamental to high-quality care, and yet those experiencing fertility problems struggle to be heard.

Meaningful involvement goes beyond commenting on predefined scopes. Ideally, guidelines would follow co-production principles as follows, recognising those affected as equal partners.

This is a democratic and moral imperative. Here, citizens play 'an active role in producing public goods and services'. This is not radical – co-production is recognised as a 'critical ingredient' in healthcare design by NHS England. While not without challenges and tensions, if properly resourced, co-production could form policy that serves those whom it affects.

Participation without power is not inclusion. Until NICE's processes reflect that distinction, the most marginalised voices will continue to go unheard.

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Access to publicly funded fertility treatment will be discussed at next month's PET event Accessing Fertility Treatment: Challenges and Solutions for LGBTQ+ Communities, taking place online on Wednesday 10 June 2026.

Find out more and register here.