I spent the day on Wednesday at the HFEA’s annual conference where the theme for the day was putting patients at the centre of everything that the authority does. It’s a laudable aim and one that Interim Chair Sally Cheshire clearly takes very seriously. There were a series of workshops for the delegates, who were mainly representatives from UK fertiliy clinics, and many of these focused on quality of care and understanding the patient point of view. The key question is whether any of this will really make a difference to the experiences of the average patient.
When my very first book about IVF, In Pursuit of Parenthood, was published in 1998 I was invited to speak at an HFEA conference about the patient experience. I’d been shocked when I’d carried out the interviews for the book to discover the poor level of care many of my fellow patients had received from clinics, and gave a rather blistering talk about all that I felt was wrong. I hoped it would help clinics to focus more on quality of care and to think about the patient experience.
When I wrote The Complete Guide to IVF more than ten years later, things had changed but not always for the better – there was more choice for patients, but that also led to more confusion, treatment was more expensive and there were far more optional extras that patients often felt obliged to pay for in order to maximise their chances of success, yet many clinic staff were still too busy to offer the emotional support to patients that they so clearly needed.
We must hope that the HFEA’s decision to focus on quality of care is more than just another talking exercise and that things really do change for patients. There was clear resistance from some clinicians at the conference to the idea of the HFEA moving into areas which they felt went beyond the authority’s remit. Of course, there are some clinics who think very carefully about how to improve the patient experience, but if all clinics were getting it right for their patients, there would be no need for HFEA intervention. We can only hope that this really does herald a change for the better – but for now, it’s a matter of watching this space…