National Patient Survey report

The experiences of over 1,000 fertility patients have been revealed in what’s thought to be the largest UK survey of its kind.

The National Patient Survey 2021, published today by the Human Fertilisation & Embryology Authority (HFEA), reveals that 72% of patients were satisfied with their care. However, they were least satisfied with the level of support available, such as access to counselling (62%) and their partner’s involvement (70%).

The National Patient Survey, which explores the entire patient journey from accessing GP services, through to patients’ most recent experience of treatment, aims to identify changes in the fertility landscape since the first survey in 2018. The survey will inform the work of the HFEA; helping it achieve its objective of providing high-quality care for everyone using the UK’s fertility service.

The National Patient Survey 2021, which surveyed 1,233 of the UK’s fertility patients between 2 November and 7 December 2021, found:

• Overall satisfaction: Seven in ten (72%) patients were satisfied with their latest experience of fertility treatment (down slightly from 75% in 2018), with patients most positive about the clinic environment (87%) and being treated with dignity and privacy (87%).
• Experience of GPs: Around four in five (78%) patients spoke to a GP prior to starting treatment, usually within one to two years after first trying to conceive. However, less than half (47%) were satisfied with their experience of doing so.
• Clarity of information: Consent forms for treatment were particularly clear (93%), followed by clarity of the treatment plan (83%) and what to do if there was a medical issue or emergency (79%). Fewer (68%) felt that their own chance of success had been made clear.
• Multiple births: Three in ten (30%) had a multiple embryo transfer during any of their treatments, with most doing so on clinic advice. 69% said the clinic discussed the risks associated with multiple births.
• Donation: Around three in ten (28%) had used donated eggs, sperm or embryos, with donated sperm most common. Although a quarter (25%) found them difficult to access. Those who had used donor eggs, sperm or embryos said it was important that the donor’s ethnicity matched their own (82%).
• Treatment add-ons: Two-thirds of patients (65%) had used a treatment add-on, with acupuncture most common (33%). Of those using an add-on, less than half (46%) felt the cost was clear, or that the clinic explained the likely effectiveness of the add-on at increasing the chances of having a baby (46%). A third (33%) said that the clinic had explained the potential risks(s) of the add-on.

Julia Chain, Chair of the Human Fertilisation & Embryology Authority (HFEA) said: “As the UK’s fertility regulator, we want every patient accessing fertility services to receive high-quality care, and although 72% are satisfied, it’s disappointing that nearly 30% of patients who took part in this survey, are not (17% dissatisfied, 11% neither/nor). The findings from this survey, together with the HFEA’s rigorous inspection programme and bespoke statistical and research led reports, enable us to identify these challenges. What’s important now, is that they inform our work and lead to improvements in the UK’s fertility service now and in the future.

“There have been some very welcome improvements since our last survey in 2018, particularly around the clarity of information provided to patients. Our 2021 survey has also emphasised the progress made in reducing multiple births*: the biggest single health risk from IVF treatment. Those at higher risk - aged 40-42 (68%), along with Black, Asian, Mixed and Other ethnicity respondents (65%) - were more likely to report that they had their individual risk discussed; a move that will further reduce associated complications such as late miscarriage, pre-eclampsia and stillbirth.”

Around 53,000[1] patients a year in the UK access fertility services, and for many, it’s often one of the hardest times of their life. For some patients, Covid-19 has exacerbated this experience further; halting fertility treatments for a short time, causing delays for NHS funded treatment[2] and putting patients at risk of isolation with restricted access for partners. Our survey reflects this:

• Support: Respondents were less satisfied that their partner was involved in decisions about care (70%), and satisfaction lowest for the level of support given (including access to counselling), at 62%.
• Treatment delays: 22% of patients who had treatment in the last two years experienced a delay in starting treatment due to Covid-19. NHS patients were more likely to have been affected by delays in referrals due to Covid-19 (32% vs. 18% of private patients).
• Satisfaction: Those who had treatment in the past two years were less satisfied than those whose last treatment was between two and five years ago (70% vs. 81%)
• Donation: Of those who had used donated eggs, sperm or embryos, two-thirds (65%) said they found them easy to access, however those who had treatment in the past two years were more likely to say they had found it difficult (30%).

Julia continues: “The journey to parenthood is sadly not always an easy one and we know treatment delays caused by Covid-19 have for many, compounded this further.

“Delays in referral or treatments for gynaecological conditions may delay fertility treatment and as success of having a baby after treatment declines with age, healthcare professionals must be mindful of the emotional impact this may have for patients, particularly for women over the age of 35.”

The National Patient Survey 2021 also aims to answer some of the questions raised in the HFEA’s Ethnic Diversity in Fertility Treatment 2018[1] report, published in March 2021. Julia says that although these results are not statistically significant, they suggest that differences in some Black and minority ethnic groups remain.  

The National Patient Survey 2021 found that:

• White respondents were more likely than Black, Asian, Mixed or Other ethnicity respondents to speak to their GP earlier (77% vs. 72%)
• Black, Asian, Mixed or Other ethnicity were more likely to have had a multiple embryo transfer than White respondents (38% vs. 29%), similar to findings from our Ethnic Diversity in Fertility Treatment report.
• Black, Asian, Mixed and Other ethnicity respondents were more likely to wait more than 18 months (32% vs. 27% of White respondents) for treatment to start.
• Waits for donor eggs, sperm and embryos appear to be longer for Black, Asian, Mixed and Other ethnicity respondents with a lack of donor egg, sperm and embryos meeting their criteria, being the main reason for this.

Julia said: “Our Ethnic Diversity in Fertility Treatment report found that Black patients had lower IVF birth rates, the highest multiple birth rates of any ethnic group, and generally started IVF at later age. It also found that white donor eggs were commonly used across all ethnic groups.  Sadly, the findings from the National Patient Survey 2021 indicate that this remains the case today.

“More research is needed to understand why these disparities exist.  We urge clinics to update information held on their website to help patients who require donor sperm and eggs to plan their treatment. Meanwhile, we’ll work with clinics to further understand cultural and religious beliefs that may impact on donor recruitment to help overcome any barriers that may exist.”

Read the National Patient Survey 2021 report in full via www.hfea.gov.uk/about-us/publications/research-and-data/national-patient-survey-2021/

ENDS

For more information or for interviews with a HFEA spokesperson, please contact press.office@hfea.gov.uk or call 020 7291 8226.

For out of hours requests, please call the duty press officer on 07771981920.

Notes to editors

• The first HFEA national survey of fertility patients took place in 2018. Many of the questions are comparable to our 2021 survey, but there are several new questions; multiple embryo transfer and donation.
• *Our 2021 survey emphasised progress made in reducing multiple births however the findings are not statistically significant. Those at higher risk - aged 40-42 (68%), along with Black, Asian, Mixed and Other ethnicity respondents (65%) - were more likely to report that they had their individual risk discussed; a move that will further reduce associated complications such as late miscarriage, pre-eclampsia and stillbirth.

About the HFEA

• The HFEA is the UK’s independent regulator of fertility treatment and research using human embryos.
• Set up in 1990 by the Human Fertilisation and Embryology Act, the HFEA is responsible for licensing, monitoring, and inspecting fertility clinics to ensure patients and everyone born through fertility treatment receives high quality care.
• The HFEA is an ‘arm’s length body’ of the Department for Health and Social Care, working independently from Government providing free, clear, and impartial information about fertility treatment, clinics and egg, sperm and embryo donation.
• The HFEA is funded by licence fees, IVF treatment fees and a grant from UK central government. For more information visit, hfea.gov.uk.

[1] Fertility Trends 2019, HFEA

[2] Ref RCOG report when available

[1] Ethnic Diversity in Fertility Treatment report, HFEA