The far-reaching trauma of infertility: Fertility Network UK survey

Fertility Network UK’s survey of approaching 1,300 fertility patients in the UK reveals the devastating toll infertility wreaks on people’s mental health, relationships, finances and career. Released at the start of National Fertility Awareness Week 2022, the findings also highlight the lack of information provided by GPs and the limited support options.

Gwenda Burns, chief executive of Fertility Network UK said: ‘Fertility Network UK’s major new survey reveals the far-reaching trauma of infertility, painting a stark, distressing picture of what it is like to experience infertility and fertility treatment in the UK.’

‘Fertility patients encounter a perfect storm: not being able to have the child you long for is emotionally devastating, but then many fertility patients face a series of other hurdles, including potentially paying financially crippling amounts of money for their necessary medical treatment, having their career damaged, not getting information from their GP, experiencing their relationships deteriorate, and being unable to access the mental support they need.’

‘This is unacceptable. Infertility is a disease and is as deserving of medical help and support as any other clinical condition. Yet our findings, launched at the start of National Fertility Awareness Week 2022, shows how much more needs to be done. That’s why this week we are #Fighting4Fertility.’

Fertility Network UK’s survey was conducted with Dr Nicky Payne, Middlesex University London and found:

Mental health

• 4 out of 10 respondents experienced suicidal feelings: 30% reported suicidal feelings sometimes or occasionally, while 10% experienced suicidal feelings often or all the time.
• Approaching half (47%) of respondents experienced feelings of depression often or all the time, while the vast majority (83%) felt sad, frustrated and worried often or all the time.

Finances

• Two-thirds of patients (63%) had to pay for their own medical treatment.

• The average cost of investigations and treatment was £13,750.

• Around 1 in 10 couples (12%) spent more than £30,000 and a few (0.5%) spent over £100,000.

Career

• More than 1 in 10 respondents (15%) either reduced their hours or left their job.

• Over a third (36%) of respondents felt their career was damaged as a result of fertility treatment, and the majority (58%) felt concerned that fertility treatment would affect their career prospects.

• Only a quarter (25%) reported the existence of a supportive workplace policy, while 1 in 5 (19%) weren’t sure if a workplace fertility policy existed.

• Less than half (45%) of respondents felt they received really good support from their employer.

• The majority of respondents (77%) did disclose they were undergoing fertility treatment to their employer, but of these less than half (47%) said reasonable adjustments were made for them.

Relationships

• The majority of respondents (59%) reported some detrimental impact of fertility problems and/or treatment on their relationship with their partner, while 2% of respondents reported their relationship had ended as a result.

Information & Support

• Approaching half (44%) of respondents sought help from Fertility Network UK, the nation’s leading fertility charity.

• Three-quarters of respondents (75%) felt their GP did not provide sufficient information about fertility problems and treatment and 7% were not sure. Less than one-fifth (18%) were satisfied with the information GPs provided.

• The majority of respondents (78%) would have liked to have counselling if it was free. Half of respondents (51%) did have counselling, but most of these (59%) had to fund some of it themselves.

• Just over a quarter of respondents (27%) attended a fertility support group but nearly half (47%) who didn’t attend would have liked to if one was nearby. 

Commenting on the survey, Dr Raj Mathur, chair of the British Fertility Society, said: ‘’This survey gives a sobering – some might say, shocking – insight into the wellbeing of sub fertile people, especially women, in Britain today. For 47% to report feelings of depression and as many as 10% to report suicidal thoughts often or all of the time is unacceptable.’

‘This survey uncovers effects far beyond the physical health of patients. We must do better as a society and a health system in looking after patients with fertility problems. Above all, this must begin with a fair funding settlement for fertility treatment across the UK, based on full implementation of the evidence-based recommendations made by NICE. We must improve awareness of fertility matters and the effect of subfertility on patients, among healthcare commissioners, professionals and wider society.’

Commenting further on the survey, Fertility Network’s chief executive Gwenda Burns added: ‘The survey findings released today by Fertility Network UK also build on our previous infertility impact survey with Middlesex University in 2016. A comparison of the two reveals fertility patients are still being failed on many counts.’

‘More patients now have to pay for their fertility treatment and continue to pay eye-watering amounts of money; the number of respondents reporting a supportive workplace policy has stayed the same at just one-quarter (25%), and three-quarters of patients still feel let down by their GP when it comes to providing appropriate information.’

Respondents to the survey, which was conducted between April – July 2022, were mainly white (93%) women (98%) in a heterosexual relationship (90%). The average current age of respondents was 36.6 years and the average age when they started treatment was 33.7 years. They had on average been trying to conceive for 4.1 years. The majority (69%) were living in England, 18% in Scotland, 7% in Wales and 6% in Northern Ireland.

A copy of the full report The Impact of Fertility Challenges and Treatment can be viewed here.