Self-funded fertility patients — have your say

If you have paid for fertility treatment in the UK, or have considered doing so, sharing your experiences can help shape guidelines to make sure patients are treated fairly in the future.

The UK government wants to hear from patients about their experiences, so their voices can be used to help in the production of the Competition and Markets Authority (CMA)'s guidance for fertility clinics. This guidance will aim to ensure that fertility clinics comply with consumer law and put patients first (see BioNews 1035).

If you can contribute, please make sure to email details of your experience as a consumer in the fertility sector to the CMA by this coming Friday (8 May). The deadline was originally sooner, but has been extended in light of the coronavirus pandemic.

Send your comments – as much or as little as you like – to consumerlawivfteam@cma.gov.uk, as instructed here.

Self-funded fertility patients are urged to discuss experiences of the following areas: transparency of treatment costs; how treatment 'add-ons' are advertised and sold to patients; the accuracy of success rates and the format in which they are presented to patients; and the general terms and conditions of fertility treatment.

To help fertility patients form their response, former fertility patient Katy Lindemann has suggested a number of questions for patients to consider around pricing, cycle packages, success rates and add-on treatments. These include:

• Did clinics have clear and transparent pricing?

• Did you feel you had a clear idea about what the cycle would cost and how did this compare to what you ended up paying?

• Did you understand what was and wasn't included in the cycle cost and did you experience any unexpected costs – such as drugs or blood tests?

Success rates can differ depending on how they are presented, so:

• Did clinics provide clear information about their success rates and did they make it clear where these figures were from (for example, internal clinic data versus audited data from the Human Fertilisation and Embryology Authority (HFEA))?

• Did they explain what the data was measuring and why (for example, pregnancy rates vs live births, per cycle started versus per embryo transfer?

• Did they provide success rates by age group?

On add-on tests (such as endometrial scratch, time-lapse imaging, pre-implantation genetic screening, reproductive immunology, endometrial receptivity tests and embryo glue) Lindemann advises thinking about whether you had enough information to make an informed choice about whether to opt for an add-on.

• If you had treatment in the last 12-18 months, did your clinic mention the HFEA Traffic Light system for information about add-on treatments?

• Was it made clear to you that it is not known whether add-ons work?

• Were the risks of add-ons clearly explained to you (for example, any potential health risks to you or your baby, or that certain add-ons could plausibly reduce your chances of having a baby)?

A full public consultation on the CMA's guidance is due later in the year. Further details can be found here.