For Modern Queer Family, Refinery29 reported on how LGBTQ+ people spend astronomical amounts of money to start a family as they are left with no choice but to pursue private care or follow more dangerous routes. During that reporting, we noticed a gap in the available data. We decided to investigate and can reveal that the NHS is not centrally recording information about how easy it is for LGBTQ+ people to access fertility care.
In England, access to fertility services is complicated. Fertility services are provided by a mixture of NHS and private services, with roughly 35% of treatments funded by the NHS – the lowest of all four UK nations, according to the Human Fertilisation & Embryology Authority (HFEA). In Scotland, all couples have access to three rounds of IVF if they meet nationally agreed NHS criteria, while Wales and Northern Ireland each have a more restrictive national policy, offering two full cycles and one cycle respectively. In England, the number of rounds you have access to – and whether you have access at all – is largely determined by where you are and, to a certain extent, who you are.
Everyone in England, whether you are single or in a couple (same-sex or heterosexual), has to negotiate a postcode lottery. The policies governing IVF funding are dictated by individual Clinical Commissioning Groups (CCGs) around the country. According to a report published by the British Pregnancy Advisory Service (BPAS) in August last year, 108 CCGs (80%) fund fewer than the three cycles recommended by the National Institute for Health and Care Excellence (NICE), with 86 of these (64% of CCGs) only funding one cycle of IVF per individual/couple. Just 23 CCGs fund the three cycles recommended by NICE. On top of that, 73 CCGs (54%) do not routinely contribute any funding to patients who must undergo artificial insemination in order to verify their infertility, which includes (although is not limited to) same-sex cis female couples.
For people whose family exists outside the cis man, cis woman format, access is even harder. As Refinery29 reported back in December 2020 in our Modern Queer Family series, access to NHS funding for same-sex couples or single patients requires far more money and jumping through hoops. If you want access to IVF, you have to spend upfront to prove your fertility – not only fronting the cost of sperm and the mandatory tests but also paying for each round of intrauterine insemination (IUI), a process where the sperm is directly inserted into the womb. This has to be done through a fertility clinic, which costs between £800 and £1,300 a go; it cannot be done at home, thanks to the UK’s sperm donation laws. Most CCGs require you to complete at least six rounds of IUI to prove that you have tried other fertility methods before they will consider you for NHS funding for IVF, though this number varies. And once you have gone through that process, there is still no guarantee of funding or equal treatment.
Take Jazmin and her partner, Carla, who Refinery29 previously spoke to for Modern Queer Family. They started trying to conceive in 2017 with at-home insemination using a vetted donor but didn’t have much luck. In 2018 they went to their GP and then a series of specialists, culminating in Jazmin finding out she had ‘unexplained infertility’ in 2019. They were told they’d be eligible for funding for a specialist gynaecology doctor but only if Jazmin applied as a single parent – as a same-sex couple, they “didn’t fit the criteria”. When the couple asked why, they were told it was because they had previously tried at-home insemination, even though her records always showed the at-home attempts.
In order to understand what’s going on and whether the system is working, we need data to help root out discriminatory decisions. But Freedom of Information (FoI) requests submitted by R29 reveal that data on the number of LGBTQ+ people who have tried to go down the NHS funded route is limited.
While we have some data on what proportion of NHS-funded IVF goes to what family formation, we don’t know how many LGBTQ+ people have tried to seek NHS funding and not been successful. In 2020 HFEA published a report on family formations which found that NHS-funded IVF cycles were more common for patients in heterosexual relationships (39%) compared to patients in female same-sex relationships (14%) and single patients (6%), varying considerably by nation. A more recent report, published in May this year, found that although treatment for a cis female with a cis male still dominates in IVF (94% in 2019), there is an increasing number of cycles involving patients in female same-sex relationships or with no partner. In 2019, 2,435 IVF cycles (4% of all cycles) involved a female partner, compared to 489 cycles in 2009 (1%). Yet that increase in IVF among same-sex couples doesn’t appear to be paralleled in the distribution of NHS funding. We don’t have data on NHS funding for LGBTQ+ people across that timeframe.
There is a lack of transparency about access to fertility services in the NHS, particularly for LGBTQ+ people. Take IVF as an example, a service which the NHS might fund fully for you or which you might be completely cut off from, depending on who you are and where you live. There are gaps in our knowledge about how this IVF is accessed. We issued FoI requests to all the CCGs and Trusts in the UK to find out how many LGBTQ+ people have sought IVF in the past 10 years, and how many have actually accessed it.
The overriding response was that this data is rarely recorded and is not centralised.
The NHS gave multiple reasons. NHS England said: “We only collect this data at a CCG level.” The majority of CCGs, in turn, said that this data was either not recorded (87 CCGs, or 64%), while three CCGs don’t provide fertility services. Where the data was recorded, only eight CCGs provided breakdowns, while five others responded that accessing that data is not easy and would require an in-depth investigation which would exceed the cap on resources and time set by CCGs.
A response to FoIs sent to NHS Castle Point, Rayleigh and Rochford CCG, NHS Thurrock CCG, NHS Bassetlaw CCG and NHS Mid Essex CCG stated:
“The above CCGs do not have a mechanism for recording on their database whether a patient is part of the LGBTQ+ community. This would require opening up every single IVF case individually for the last 10 years – notwithstanding the fact that a patient may or may not have declared this. The information you requested is therefore not held by the CCGs.”
NHS Digital, the national data and technology partner for the NHS, when pressed on why this data is not collected centrally through them, cited privacy reasons. “NHS Digital does not collect this information in accordance with data protection legislation as this level of personal information about patients is not required by NHS Digital. This information would only be relevant for direct care purposes and to minimise privacy risks it is not collected by NHS Digital. NHS Digital does not have any plans to collect this information in the future. Any personal information that is collected by NHS Digital is subject to the national opt-out.”
This myriad of individual reasons all contribute to a bigger problem: when there is no data, there is no visibility on how deep a problem runs and who is affected by it. Without that visibility, there can be no accountability for the decisions made.
Without the accountability of centralised data on access to fertility services that accounts for all sexualities and genders, we cannot see the scope of the problem or unveil how many queer people have been forced down expensive or dangerous routes (private care or at-home services) by not having access to NHS support. Individuals attempting to navigate the system, like Jazmin and Carla, are left without answers or a course of action, bar going privately.
The director of embryology at BPAS, Marta Jansa Perez, said:
“BPAS Fertility has raised several concerns about inequality and inconsistencies in NHS-funded fertility treatment, in particular for LGBTQ+ couples. It is clear that a complete overhaul of the current system is needed, but it is hard to know where to begin without this crucial data about those attempting to access the service.
“Undertaking measures to identify barriers to accessing fertility treatments will be key to reforming the system, by shining a spotlight on gaps in the current provisions. It is concerning that this is left to charities, activists and journalists, via Freedom of Information requests. The NHS has already stated that CCGs ‘should provide equal access to services’ but little action is being taken to implement this.
“Against a backdrop of increasing restrictions to NHS-funded care, we are proud to be launching our not-for-profit fertility service in 2021. We will provide a safe, high-quality and accessible service, without profiteering from patients. Our service will give those ineligible for NHS funding an affordable option to access the care they need.”
Services like the forthcoming BPAS not-for-profit fertility service are just one part of the solution in overhauling the provision of fertility care in the UK. Increasing awareness of these data disparities and the potential costs for families which aren’t cis straight couples can all help empower LGBTQ+ people trying to access NHS funding. We must keep pushing for better, official and centralised data collection to reveal the scope of the problem; without it, LGBTQ+ people seeking fertility services will be left feeling powerless.
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