The British Infertility Counselling Association (BICA) recently collaborated with Infertility Network UK on a short survey to get a snapshot of the patient experience of counselling in licensed centres. The results reveal some worrying findings about both the offer and provision of counselling from clinics.
Although a small sample (214 patients), this is a very welcome piece of research, which provides some evidence about how counselling is - or isn't - offered and delivered by clinics. BICA, through anecdotal comments from both counsellors and patients, has long suspected that in some clinics, the offer of counselling is little more than a box-ticking exercise, given with a long list of information prior to consent.
Sadly, this survey validates BICA's concerns.
The survey also gives a useful insight into patients' needs and indicates what patients find helpful or unhelpful with regard to counselling and how it is offered and provided. This could (and should) help to inform how counselling is offered and regulated in the future.
The most concerning finding was that one third (33 percent) of respondents said that they were not offered counselling. This suggests that some clinics are failing to meet mandatory requirements. The Human Fertilisation and Embryology Authority (HFEA) Code of Practice Section 3 clearly states that the offer of counselling is a statutory legal requirement: 'The law requires counselling to be offered...' It goes on to explain how clinics are meant to offer counselling and in what circumstances, yet from the survey responses it is apparent that this licence condition is not being met in all clinics.
Also of concern was the fact that 20 percent said they were not even aware that counselling was offered at their clinic. Again, this contravenes the HFEA Code of Practice direction that 'the centre should make patients aware that the offer of counselling is routine' (section 3.2).
Of those who were aware, the majority - 61 percent - felt that the potential benefits of counselling were not made clear to them. Those who felt the potential benefits had been made clear cited that 'being repeatedly told that counselling was available, accessible and could help', was most useful, while those who felt the benefits hadn't been explained said that being reminded about it on a regular basis and being told what counselling was for, might have helped.
This suggests that if counselling were routinely presented as helpful and appropriate, patients would be more likely to seek, and potentially benefit from the counselling offered.
Furthermore, 45 percent of those who did not see a counsellor said this was because they did not have enough information about how it might help. This begs the question: what good is an offer of counselling if the patient(s) concerned remain unaware of the benefits of it because they have not read the information, do not hear it, and do not understand its relevance?
The issue is not simply about patients being aware of or even offered counselling, it is about how it is offered and the value and emphasis attributed to it. It seems that some clinics are failing in their duty of care towards their patients by not acknowledging both the emotional impact of infertility and also the need for exploration of the implications of treatment, particularly where this involves donated gametes.
A key message from this survey is that counselling needs to be offered as a routine part of the treatment pathway. For example, of those who hadn't seen the clinic counsellor (in addition to the 45 percent who said that it was because they didn't know how it might help):
- 32 percent didn't think they needed it
- 12 percent couldn't afford it
- 8 percent were worried it might affect their treatment if clinic didn't feel they were coping
- 3 percent were worried about confidentiality
- 15 percent said counselling took place at an inconvenient location
- 9 percent said appointments weren't at the right time for them
- 6 percent said waiting time for an appointment was too long
There is clearly much more that clinics can do, not just to comply with the legislation, but also to effectively provide accessible emotional support for those who need it. And people clearly do need it – 50 percent took up the offer to see the clinic counsellor and 62 percent said that they had sought support elsewhere.
Another theme that emerged was that some respondents were wary of having counselling. They felt they risked being perceived negatively, that it would be seen as a sign of weakness and that they might be assessed as unsuitable for treatment.
Clearly counselling is made available to provide both emotional support and information and is different from any assessments that a clinic may undertake - this is not made clear in all clinics.
The survey also looked at cost. Only 12 percent of those who did not see a counsellor said it was because they couldn't afford it. But half of those who did not see a counsellor said they would have been more likely to have done so if the cost of counselling had been included in the treatment. Furthermore, 67 percent of respondents would be happy to pay more for IVF if all counselling was included in the cost of treatment.
The fact that 70 percent of respondents who saw a counsellor found it helpful is encouraging, but also raises the question about what was lacking for the 30 percent and how we might better help them. Some of this lack of satisfaction may be down to the mandatory element of implications counselling where some patients felt they were being assessed and that it was 'just something I had to do' and 'just another hoop to jump through'.
Finally, the vast majority of respondents (75 percent) were not aware of the BICA website and the availability of accredited specialist infertility counsellors for those who wish to access counselling outside of a clinic. Clearly, there is work to be done in raising BICA's profile and promoting awareness of what BICA members offer and how to access specialist infertility counselling.
Going forward, BICA will be working with the HFEA and the British Fertility Society to produce best practice guidance for clinics on the offer of counselling. We also intend to find out more about the offer of counselling in licensed centres, by asking counsellors about this and then taking action to provide both information and support to clinics and infertility counsellors to enable them to better meet the emotional needs of patients.