Baroness Nargund
Main Page: Baroness Nargund (Labour - Life peer)(1 month, 3 weeks ago)
Lords Chamber
Baroness Nargund (Lab)
My Lords, it is a pleasure to follow the noble Baroness, Lady Boycott. I thank the noble Baroness, Lady Deech, for securing this very important debate. I declare an interest as a board member of the Human Fertilisation and Embryology Authority and as someone who previously led IVF and fertility units for over three decades. The debate is rooted in my long-standing and strong commitment to promoting the health and safety of women and the belief that fertility treatment has raised the standard in the UK.
I have been proud to serve in the fertility sector for most of my career. I have seen IVF move from a pioneering treatment to a routine service in our healthcare, with around one in every 32 births in the UK—that is one child in every classroom—now resulting from IVF. I have also seen the important role that the regulation has played in maintaining public trust and improving standards of care.
It is true that the UK’s regulatory framework, the first in the world, is considered a gold standard across the world, and it has been a genuine success. Some examples include the collaborative work that the HFEA has done to reduce multiple births from IVF treatment from 30% in the 1990s to 3% now. It has also used data to publish outcomes, including trends, and highlight inequalities in access and outcomes from IVF treatment for Black and Asian patients. In addition, the HFEA provides robust, impartial and accurate data to help with commissioning for NHS patients and patients in general.
Infertility is a disease, as stated by the World Health Organization, and IVF is an essential treatment for many. We must celebrate the success of our regulatory framework, and it is time to modernise it to better protect patients in a changing fertility sector. The HFEA has set out three practical areas for reform: stronger patient protection, regulation that reflects the changing fertility sector and more proportionate sanctions. I support all three proposals. I want to view them through the lens of something that I have argued for for many years: that the Human Fertilisation and Embryology Act must recognise not only the welfare of the child but the safety and protection of the woman undergoing treatment.
While fertility treatment creates families, the burden of treatment falls overwhelmingly on women. Women undergo multiple and often invasive investigations, daily hormone injections during the treatment and out-patient surgical procedures. They suffer from side effects, the potential complications of these treatments and the emotional and financial strain that accompany them. Yet, despite carrying so much of the burden, patient protection remains largely absent from the legislation that governs our fertility treatment at the moment. The Act was built around the embryo and the future child. The next generation of reform must explicitly state “safety and protection of the patient” at the heart of the Act.
More than 52,000 patients undergo IVF treatment each year, and 70% pay for it privately, navigating a complex commercial market at a time of considerable vulnerability. The absence of an explicit reference to patient protection limits the regulator’s ability to act when patients are offered and encouraged to pay for treatment add-ons—not only do these lack official evidence of benefit but, for some, there is evidence of harm—or when a small number of clinics maintain persistently high multiple birth rates, despite known risks to mothers and babies.
When the Act was drafted, fertility treatment largely took place within a single licensed clinic. Today, services are increasingly fragmented and delivered across multiple sites, including online. Patients reasonably assume that, if a service presents itself as a fertility provider, it is regulated by the HFEA. However, as the noble Baroness, Lady Owen, mentioned, when one of the prominent online providers closed recently, patients were left with no recourse to the regulator they believed had been protecting them. Protection must follow the patient, not the premises.
Putting patient protection at the heart of the regulation means giving regulators proportionate tools to intervene when things go wrong. At present, the HFEA’s principal sanction is to suspend or remove a clinic’s licence. In many cases, a financial penalty would be a more proportionate and patient-centred response. A licence suspension can disrupt treatment for patients in the middle of their fertility journey. Financial penalties can drive improvement while minimising harm to the very people that the regulator is there to protect.
Women move between fertility services, maternity services and the wider NHS, yet these parts of the system too often operate separately and do not communicate with each other. I have spoken previously in this House about the proportionate opportunities created by the single patient record. If we are serious about protecting patients throughout the entire reproductive journey, we need a more joined-up approach to understanding what is happening. Better linkage between the HFEA and NHS data would improve patient safety and help us understand complications and long-term outcomes and ensure that women are not lost between the systems. We also need the HFEA to have increased information powers. We owe it to women to make sure that the HFEA has more power and is able to protect.
Therefore, there is an urgent need to modernise the HFE Act in order to protect patient safety, ensure the continuity of care and hold clinics using unproven and potentially harmful add-ons to account. The responsibility must be matched with power. The HFEA’s proposals are practical, proportionate and ready. I ask my noble friend the Minister to urge our Government to act on them.