The latest meeting organised by the Progress Educational Trust (PET) asked the question 'Does fertility treatment still need to be a medical secret?' The event in Edinburgh last week, held in partnership with the Scottish Government, took place off the Royal Mile - through a narrow alleyway in Riddle's Court, one of the many old and imposing buildings scattered throughout the city.
Sarah Norcross, director of PET and commissioning editor of BioNews, introduced the topic of the evening: that fertility treatment remaining a medical secret can be problematic for patient safety. Unfortunately, changes to the law governing assisted reproduction have dropped off the radar as politicians focus on Brexit, she said. PET wants to continue raising awareness and the evening's discussions focused on whether an update to the legislation could be beneficial for patients and healthcare providers.
Dr Sarah Martins Da Silva, a consultant gynaecologist at Ninewells Hospital's Assisted Conception Unit and senior lecturer at the University of Dundee, chaired the discussion. She started by outlining her belief that keeping fertility treatment a medical secret can hinder patients and professionals. She hoped the evening would open a dialogue about the legislation.
The first speaker Dr Catriona McMillan, a senior research fellow in medical law and ethics at the University of Edinburgh, began by outlining some essential definitions. The principle of patient confidentiality exists throughout the health care system, but a medical secret goes further than patient confidentiality. Dr McMillan elaborated that there usually is implied consent assuming that health professionals can share medical information to enhance the patient's treatment with other health professionals, but medical secrets, including fertility treatment, do not automatically form part of the medical records of a patient.
Dr McMillan discussed how the law around fertility has changed over the years, resulting in the most recent HFEA Code of Practice (9th edition) in 2018. The law covers all treatment facilities, whether or not they are part of the NHS, and centres need a patient's written consent before disclosing information relating to their treatment. It is not only the patient who needs to agree to this, as fertility treatment can include a partner - this person also needs to consent if they could be identified through the disclosure of the medical records.
Dr McMillan also pointed out that the fertility centres need to warn the patient that once the information is disclosed to other health professionals, others could potentially find out about the fertility treatment, eg in the case of the patient's death.
She concluded her talk by raising some ethical concerns. Her questions included: will handling fertility treatment the same as other therapies benefit the patient, who would this affect, what about their partners and children?
She also asked if the special legal protections that apply to fertility treatment affect or contribute to stigma, and how other sensitive issues that are not medical secrets compare? Dr McMillan noted that termination of pregnancy does not fall under medical secrecy, but could be considered equally sensitive.
The next panel speaker, Gwenda Burns, chief executive of the patient charity Fertility Network UK gave a moving talk urging that for every decision taken in fertility treatment, the patient should always be considered first, as the process can be emotionally difficult.
Highlighting this emotional and mental health toll, Burns presented results from a 2016 survey in partnership with Middlesex University, reporting that 90 percent of fertility patients experienced feeling depressed, 42 percent had suicidal thoughts, 70 percent experienced detrimental effects on their relationship and 75 percent would have liked counselling, but only 44 percent received counselling.
She concluded that it seemed wrong that health professionals do not have access to these medical notes and highlighted the risks that come with the current legislation, including babies born too early and patients experiencing severe anxiety during and after pregnancy.
'If health professionals don't know, how can they offer proper medical support going forward?' Burns asked. There could be the need for more scans or check-ups in a pregnancy resulting from fertility treatment, for example. Fertility patients can experience anxiety about potentially losing a pregnancy, and if health professionals do not understand where the increased anxiety comes from, patients could be at risk of being dismissed, leading to the breakdown of the relationship between the health professional and patient.
Burns also revealed that a smaller survey of five new mothers, none of whom told their health professionals about their fertility treatment, reflected the findings from the 2016 survey. The women felt under pressure to cope well; feared the loss of their baby; and experienced depression and postnatal illness. The patients noted how difficult it was for them to start the conversation about fertility treatment – which was made harder by it remaining a medical secret.
Patients for whom treatment is unsuccessful feel isolated rather than supported, and can feel like failures. Their GP is never informed of the final outcome and there is no follow-up, even though fertility treatment - whatever the outcome, can have detrimental effects on mental health and wellbeing.
Burns acknowledges that the fertility journey is a very personal one. But she argues that while health professionals want to support their patients, as long as fertility treatment remains a medical secret, this can never happen.
The last speaker Dr Jane Stewart, chair of the British Fertility Society and head of the Newcastle Fertility Centre at the Centre for Life, emphasised that she wants the law to change. She pointed out that the NHS has the unique potential to provide a seamless pathway from the GP to specialities, ensuring continuity of care. Fertility treatment as a medical secret makes this difficult.
Dr Stewart argued that health professionals need to think beyond their own subspecialties, and that patients should be able to expect that health professionals inform each other about treatment courses to ensure optimal care.
She also stressed that fertility treatment as a medical secret requires the taking of separate notes and complicated correspondence between health professionals. This is currently not optimal and Dr Stewart further describes practical problems of fertility treatment as a medical secret.
A further problem is that even practitioners sometimes think it is illegal to ask the patient about whether they are undergoing fertility treatment, creating another hurdle to good communication, she said.
Dr Martins Da Silva chaired a lively audience discussion, with some people sharing moving personal stories. But in the end everyone seemed to agree: changing the law and removing the status of medical secret from fertility treatment will benefit both patients and health professionals, and create a safer and hopefully more supported journey for fertility patients.
PET is grateful to the Scottish Government for supporting this event. Our next public events will be:
'Reality Check: A Realistic Look at Assisted Reproduction' - PET's Annual Conference in London this coming Wednesday (4 December 2019), see the agenda and timetable here and register to attend here.
'Frozen Fertility: The Challenges of Storing Eggs, Sperm and Embryos' - a free-to-attend evening event in Edinburgh on the evening of Wednesday 8 January 2020, register here.