On the day England went into its second national lockdown the Progress Educational Trust (PET), the charity that publishes BioNews, held a timely online event: 'Lessons from Lockdown: How to Improve Support for Fertility Patients'.
The event provided a poignant review and discussion of the experience of fertility patients during the first national lockdown, and the uncertainty that arose as clinics closed, leading to the disruption of treatment.
This event complemented an earlier event (see BioNews 1058), which covered best practice, guidelines and practical realities surrounding COVID-19 in the clinic, with an emphasis on testing. Director of PET, Sarah Norcross, introduced the four speakers.
First, Professor Jacky Boivin, professor of health psychology at Cardiff University, opened the session as corresponding author of research recently published into patient experiences of fertility clinic closure during the coronavirus pandemic. The research was conducted between 9-21 of April, during the early phase of the lockdown and clinic closure.
A quantitative and narrative online survey of 450 participants provided an overview of patient reactions and key findings. Professor Boivin conveyed how clinic closures strongly burdened the coping strategies of patients. Patients understood that the closures were precautionary but found this unfair and discriminatory as people who could get pregnant naturally were not advised against doing so. Many expressed the view that the closures were a 'threat to the attainability of their parenthood goals' and the 'loss of their dream of having a biological family'.
Uncertainty around the length of the treatment delay caused additional stress, on top of the patients' fertility problems such as miscarriage or failed treatment cycles, leading to internalisation. Patients reported using strategies that they could control, such as seeking information and preparation for when treatment could start again. Ten to 12 percent of patients reported stress reactions that exceeded their coping resources. The recommendations of the study included improving communication strategies to reduce uncertainty, and input from national consortia, so psychosocial interventions can be matched to the individual patient's psychological need.
The second speaker, Dr Zeynep Gurtin, lecturer in women's health at University College London (UCL) EGA Institute for Women's Health, described feedback from a new multi-disciplinary research collaboration between the Institute for Women's Health at UCL and the Reproductive Medicine Unit at UCL Hospital, exploring the impact of clinic closures and the coronavirus pandemic on fertility patients' lives, relationships and feelings. Similar to the earlier study, an anonymous questionnaire of mixed-method design was used. A response rate of more than 70 percent, for a questionnaire which took more than 30 minutes to complete, signified patients' investment in this research area.
With a demographic similar to the distribution of fertility patients in the UK across private and NHS clinics, the questionnaire garnered 547 responses. Dr Gurtin explained that the degree of helplessness, hopelessness, frustration and anxiety experienced by patients outweighed any concerns about COVID-19. Losing communication with clinic staff and being forgotten about was the most significant theme. More than half of the respondents felt there were negative elements in how the clinics handled closure and subsequent plans to reopen.
'Severe lack of empathy', 'receiving a letter about my next appointment with a big black line through it stamped cancelled', 'it's been six weeks since they updated information on their website and I feel let down' were specific comments Dr Gurtin shared to illustrate the study findings, stating that although the lockdown may have been unavoidable, an additional avoidable level of stress for patients became a consequence. The study recommendations were that transparency, even if this is to convey uncertainty, is helpful. Website updates, social media support or helplines, and availability of staff for reassurance were all tools that could have been put in place by clinics to support patients.
Seetal Savla, an IVF patient and founder of the website SavlaFaire, shared her moving experience of going through fertility treatment at the time of clinic closures. Savla explained that she felt lucky; the clinic had sensitively managed her expectations during a treatment cycle at the beginning of the pandemic. Nonetheless, she still felt stranded, destabilised, angry and hopeless with emotions on repeat, almost physically feeling time slipping through her fingers. Savla described the problems of homeschooling, childcare and talk of a COVID baby boom as causing her to 'scream on the inside'. It was interesting that the Trying to Conceive (TTC) community on social media also became a 'big fat negative' for some when patients shared the news that their treatment was starting again, while other patients were still waiting. Savla's own lessons from lockdown can be found on her website.
The final speaker, Carmel Dennehy – fertility implications and support counsellor at University College Hospital in London – described the findings of a study carried out by BICA about access to counselling during the pandemic. The results showed that for some patients, counselling was abruptly stopped, and other patients had problems with accessing counselling via their clinic. Some counsellors were furloughed, fired or unable to work at a time when their support should have been extended. Dennehy explained that generally, counselling provision across clinics was not adequate even before the pandemic. The experiences of patients during the pandemic should be used to improve support pathways – including counselling – to provide sensitivity, respect throughout treatment, reassurance and support as required. The study revealed that patients reported friends and family as their most positive support, and counselling as their second most positive support.
Norcross then led a Q&A session, where the first question from the audience asked whether patient responses in the studies had differed by country and patient funding status. The panel members who led the studies explained that NHS-funded patients were concerned about losing the chance of a cycle due to exceeding age criteria, or losing contact with the clinic. Private patients expressed concerns about the possibility of losing money if treatment was cancelled. Cross-border patients also had additional complications of two sets of COVID-19 guidelines, and reported similar stress reactions.
In response to a question asking whether there were any positive responses from patients, Professor Boivin reported that about half of the respondents said they had been given a 'break' from treatment and a chance to 'grieve for a loss'. The majority of respondents were able to be positive about their clinic, but said that communication had been a problem. It was noted that these responses were from the early stage of clinic closures. Dr Gurtin reported that in her later study, positives such as time for self-care, online appointments, social media support and counselling were useful, but not as widespread as they could have been. All panel members agreed that IVF treatment should be considered an essential medical treatment for travel and attendance, including treatment aboard.
'What can be done and who is responsible?' were the questions on everyone's mind after listening to the speakers. Norcross summarised the panel responses: The HFEA should continue to give strong encouragement for better patient support, and offer such support alongside clinics, patient groups, professional societies and the patients themselves. A stepped approach would provide psychosocial resources that are curated for quality, but allow people to tailor to their need during treatments – treatments which are already stress-inducing, uncertain, difficult, lonely and anxious, all of which are problems exacerbated by the pandemic.
The audience expressed their gratitude to PET for tackling such an important topic. The support given to the panel by attendees signified a desire for change and improvement, which – together with lessons learned from lockdown in the clinics – will hopefully provide resilience for future provision.
PET is grateful to the Scottish Government for supporting this event.
Register now for the Progress Educational Trust's upcoming public events, all of which will be held online.
Fertility Facts: What Do Young People Need to Know and When?
5.30pm-7pm (GMT) on Thursday 3 December 2020
Find out more here, and register for your free place here.
Fertility, Genomics and COVID-19
9.15am-5.30pm (GMT), Wednesday 9 December 2020
Find out more here, and register here.
Note that there is an early-bird discount on the standard attendance fee, if you register by the end of this week (31 October).
An All-Consuming Problem? How to Protect Patients in the Fertility Market
5.30pm-7pm (GMT) on Thursday 14 January 2021
Find out more here, and register for your free place here.