NHS Fertility Treatment: Wouldn't It Be NICE to Have a Workable Guideline?

The postcode lottery of funding for IVF has been a longstanding issue in England. Almost 20 years ago, the National Institute for Health and Care Excellence (NICE) first published its Fertility Guideline, in which it recommended three full cycles of NHS-funded IVF. However, a recently published PET report (The Power of Three IVF Cycles) revealed that only half of GPs know that NICE recommends three cycles, and there is also widespread confusion over what a 'full' cycle of IVF entails.

Alongside its report, PET held an event entitled 'NHS Fertility Treatment: Wouldn't It Be NICE to Have a Workable Guideline?' with a packed line-up of seven experts, chaired by Dr Helen O'Neill.

Professor Dame Clare Gerada started the discussion, drawing on her extensive experience as a GP. Professor Gerada's interest in fertility began in the 1990s when a patient of hers had undergone twelve unsuccessful cycles of IVF. She described how the prevailing shame, stigma, and secrecy that surround infertility result in delayed discussions and limited support for patients. She highlighted the lack of knowledge regarding fertility treatment options among both healthcare professionals and the public, in part due to societal norms, and the lack of dialogue around infertility, which result in confusion and hindered access for patients.

As a GP, Professor Gerada made it her mission to proactively address her patients' fertility concerns and advocated for increased lobbying efforts to address these shortcomings. She emphasised the need for clear guidance regarding funding and the support of the Royal Colleges, given their vital role in shaping access to fertility treatment. She concluded by expressing her commitment to working towards improved access to fertility treatment and urging others to join in the effort.

When answering audience questions, Professor Gerada highlighted the impact of the societal perception of infertility as a personal or social (rather than a health) issue and encouraged open dialogue and discussions surrounding the allocation of healthcare resources to address infertility. She also urged GPs and medical institutions to use their influence to push for increased accountability, equality, and justice in the realm of NHS-funded IVF treatments.

Next, Steve McCabe MP, a father through IVF, described how he was alerted to issues around fertility treatment after a constituent shared her experience of feeling interrogated about irrelevant factors while trying to access treatment. He highlighted problems with the current NICE Guideline, emphasising the need for enforceable minimum standards.

Recognising the expenses associated with IVF, McCabe criticised the overemphasis on price as a determining factor for access, as the current approach allows integrated care boards (ICBs) to impose arbitrary conditions, exacerbating the postcode lottery. Despite the Warnock Report recommendation that IVF should be available on the NHS, state fertility services are often privatised. So the NHS can end up paying private commercial clinics to treat patients who qualify for funding, rather than providing treatment itself.

McCabe highlighted the inconsistency of withholding treatment for infertility while prioritising funding for other medical conditions, noting that COVID-19 may have overshadowed the importance of addressing access, leading to a decline in the provision of services. In 2018, McCabe introduced a Bill aimed at improving IVF treatment by establishing minimum measures and prohibiting eligibility criteria based on non-clinical factors. Echoing Professor Gerada, McCabe encouraged cross-party agreement to ensure that IVF treatment receives the necessary attention and support across political lines.

With a focus on her work in North Central London, health commissioner Penny Mitchell began by providing an overview of ICBs (formerly known as CCGs) and the crucial role they play in planning and addressing the health needs of residents in a specific area.

In 2020, five separate CCGs, each offering different levels of IVF provision, merged into one ICB, prompting a comprehensive review of existing fertility policies, she explained.

A Clinical Reference Group comprised of specialists, clinicians, and general practitioners was established, to guide extensive research, collaboration, and engagement with various stakeholders. After understanding the current position and NICE Guideline, demographic data and modelling were used to determine the population's needs, before a policy was drafted. This draft policy underwent widespread engagement with organisations such as Fertility Network UK and LGBT+ support groups, and was approved and implemented following appropriate impact assessments.

The key achievements of this new policy include its alignment with the NICE Guideline and increased provision of services. Mitchell remains hopeful that collaboration will address persistent challenges including financial constraints, resource allocation, patient choice, and data management.

Consultant obstetrician and gynaecologist Professor Melanie Davies provided a comprehensive overview of the NICE Guideline, highlighting its impact and discussing both successful and challenging aspects. She explained how the patient-centric NICE Guideline serves as a comprehensive framework for patients, GPs, and fertility specialists, emphasising the importance of equality and reducing inequalities in access.

For patients, a lay version of the guidance is freely available and provides advice and insights for those accessing treatment. GPs are guided on providing initial advice, conducting investigations, and making appropriate referrals, whereas fertility specialists are given detailed recommendations on a comprehensive range of topics, covering various aspects of fertility treatment.

Professor Davies described some of the Guideline's successes, including recommending fertility preservation for those undergoing cancer treatment, with this leading to NHS funding for medical egg freezing, as well as recommendations on elective single embryo transfer, which significantly decreased the rate of multiple births without compromising the overall pregnancy rate. However, these successes have been matched by challenges. She described how the NICE Guideline recognises the importance of addressing equality and unmet needs. Finally, as a clinician herself, she remarked how an imminent update to the NICE Guideline presents an opportunity to address the existing challenges and strive for better outcomes.

Dr Chris Skedgel's discussion on the value of fertility treatment and the role of public opinion in policy decisions followed Professor Davies' neatly. Dr Skedgel discussed findings from recently conducted Office of Health Economics research which involved nearly 8000 participants from eight countries. This revealed broad public support for recognising infertility as a medical condition, and considering having children as a basic human need.

However, this public support for accessing fertility treatment was not equal, as support for single individuals and those who already have children from previous treatment was lower. Public support for funding a national fertility programme was higher in China and Spain. By contrast, in the Nordic countries, the UK and the USA, fewer than half of respondents were willing to bear the full cost of a fertility programme.

Dr Skedgel picked up on a point Professor Davies had made about the unsuitability of quality-adjusted life years (QALYs) for fertility treatment, explaining how when applied to infertility, this measure yields counterintuitive results. For example, individuals who had successful outcomes through fertility treatment had lower health-related quality of life compared to those who had no access or success with treatment. This unexpected finding was attributed to various factors, including burdens associated with being older parents to young children.

Dr Skedgel finished by discussing how the unique nature of infertility, its influence on various aspects of well-being, and its wider social effects require a broader evaluation framework, which understands and addresses these complexities.

Continuing the theme of fertility and quality of life, Dr Catherine Hill from Fertility Network UK painted a vivid picture of the arduous journey faced by England's fertility patients, which she paralleled with Dante's Nine Circles of Hell, as patients navigate the torturous pathways of the nation's IVF system.

However, she also described how provision of IVF has improved in some parts of England, notably two areas in Essex which reintroduced IVF after nearly a decade of its absence, and the North London ICB that had previously been discussed by Penny Mitchell. However, significant obstacles remain, as access to NHS-funded IVF is rationed by reducing the number of treatment cycles offered.

Dr Hill mentioned the introduction of partial cycles – an additional layer of rationing, where the number of embryo transfers is limited – and how this raises several ethical, safety, and financial concerns. One-third of England's ICBs offer only partial cycles, with the majority providing just one fresh embryo transfer and one frozen embryo transfer. This raises questions about the fate of surplus embryos and the financial burden on patients wanting to use them.

Dr Hill then turned to other ways that access to fertility treatment is restricted, such as social questioning, age barriers, and relationship status. She concluded by emphasising the urgent need for change, citing the Fertility Network's recent survey on the devastating impact of infertility.

The final speaker was Sarah Norcross, director of PET, who began by quoting PET's 2022 report, Fertility, Genomics and Embryo Research: Public Attitudes and Understanding. This showed widespread public support for NHS fertility treatment provision.

GPs and NHS commissioners lack clarity on what constitutes a full IVF cycle, leading to suboptimal commissioning decisions and inadequate NHS-funded treatment. Norcross focused on the recently published Power of Three IVF Cycles report, discussing the fact that found that more than one-third of GPs across England do not think that a known cause of infertility, or reduced fertility, would trigger a referral for NHS-funded treatment in their area. Strikingly, there is a significant gender discrepancy in referral decisions, with only 52 percent of male GPs stating that patients with known infertility causes would be referred (compared to 73 percent of their female counterparts).

Another concerning aspect highlighted by Norcross was the detrimental effect that infertility has upon patients' careers. Many people find that their professional aspirations are thwarted due to the demanding nature of fertility treatments. Moreover, patients often struggle to access the counselling they desperately need. She concluded by urging attendees to support the PET campaign to end the IVF postcode lottery.

Questions from the audience focused on the significant emotional stress and trauma faced by those undergoing fertility treatment, allowing speakers to discuss the importance of emotional support. Health literacy was highlighted as important, in ensuring access to accurate and comprehensive information about reproductive choices. But above all, it was clear that supporting the PET campaign is vital, to help ensure that patients are given the best chance of accessing fertility treatment and having a successful outcome.

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PET is grateful to Ferring Pharmaceuticals for supporting this event.

The next free-to-attend online event from PET, taking place on Wednesday 19 July 2023, will be 'The Women's Health Strategy, One Year On'. Register here.

Registration will also open soon for the 2023 PET Annual Conference, which this year is entitled 'How Much Change Do We Want? Updating Fertility, Embryo and Surrogacy Law'.

The conference is in person only, and will be held in central London on Wednesday 6 December 2023. Further details will be announced in BioNews shortly.