Trauma, disenfranchised grief, uncertainty about choosing a donor or finding out whom they are, struggling to conceive or exploring options presented by a fertility clinic. The suffering as a result of a miscarriage or pregnancy loss (first time or multiple times), further trauma, birth trauma and concerns over lack of attachment due to surrogacy, donor conception or other. Feeling ill prepared for change, questions, stares, cluelessness and judgements from society including friends, colleagues, family and sometimes even oneself.
The list goes on and this is what my colleagues and I, working as fertility counsellors, are faced with every day. We hold thousands of stories and support any and everyone we meet with compassion to help guide them through the process, pain, suffering, uncertainty and whatever outcomes arises.
We are not saints. We are simply present and unconditional in our promise to be there for whoever sits in front of us, is on the end of the phone or appears on screen. They talk, share and offload, while we listen, feedback and hold. I should add that we (counsellors) are also there for each other, which is a huge comfort.
This brings me on to our annual British Infertility Counselling Association (BICA) conference on 13 May 2022. There were amazing speakers that initiated fantastic discussions, with an ongoing theme, I noticed, on how much support is required by the people counsellors meet.
Infertility, fertility issues, pregnancy loss, seeking clinic/medical support can provoke incredible levels of sadness, loss, grief, hope, guilt, shame, excitement, detachment and also bring up previous losses and emotional difficulties. All of which was discussed at the conference.
With all that I've noted above you would think (or hope?) that every fertility clinic provides every patient with some counselling at any stage. You'd be right to think that, but sadly wrong to believe it, as this is not the case. The Human Fertilisation and Embryology Authority (HFEA) currently states that a fertility consultant must 'offer' counselling during a patient's first visit. However, it's merely an 'offer' and it's not entirely clear what the consultant or clinics obligation is to actually provide counselling. This means the patient may need to find, and/or pay for, the support themselves.
Despite the HFEA expressing for many years about how important good support and care is for patients, and knowing all of the above, they continue to simply mandate the requirement for clinics to merely 'offer it' but not actually have to provide it. A change has been put in place recently with regard to surrogacy, where there is now a requirement for clinics to show that counselling has actually been carried out. I remain unclear why the HFEA has not mandated it for all.
The HFEA's new chair, Julia Chain, spoke at the recent BICA conference, sharing her enthusiasm towards the many changes she will be seeking to implement during her tenure.
I have been advocating the need for mandatory fertility counselling for many years now, an article I wrote, and published by this very medium almost to the day four years ago (see BioNews 948) and again (almost to the day... notice the pattern) two years ago (see BioNews 1048) Here, now, once again... my request is to please make at least one single session of counselling available and mandatory for every patient who comes into a fertility clinic. This should be free of charge and form part of their initial consultation package). I urge the chair of the HFEA to request transcripts or recordings from the BICA conference for some of the speakers, but do have your tissues handy as even we trained therapists were moved to tears on multiple occasions.
I know some patients will say that they don't need counselling and I respect this. This will simply result in a short counselling session at the beginning of the patients' fertility journey – and that's fine. I met with a couple recently and asked if they had anything they wanted to share or ensure we had space to explore during the session and both said, 'no, we don't have anything in mind and we're happy to be led by you'. The male partner then paused and reflected, 'There is one thing he said... ' and so much emerged, including tears. Everything that had been contained and held over many months with nowhere to place it, came out. Fertility issues can be extremely isolating and lonely.
I've met people who have found themselves in situations they never imagined, or who have received news that has shaken up their world and identity leading to, sadly, contemplating ways in which to end their life. Yes, this is extreme but unfortunately, it is not rare. For every person who might say that they don't need counselling, there are always people at the opposite end of the spectrum. Counselling has the ability to offer space and a chance for someone to have their voice heard and listened to.
Let me take this opportunity to say that there are some clinics which offer fantastic support and care for their patients. There are others who could do far better should hang their heads in shame, or even be called out by the HFEA, as they say 'care and support' is something they feel is crucial for every patient. Patients should know what level of support they can expect from a clinic, and which clinics falls short of this support, and which delivers above it.
If anything has been learnt over the 'COVID years', one that stands out to me is that while few of us enjoy being told what to do, having a framework and knowing what the governance or rules are, removes any uncertainty. It puts us on a level playing field and can help everyone to feel safe.
Some of my BICA colleagues have mentioned that they've been beating this drum not just for years but for decades. It's now 2022, surely in support of all those trying to conceive through fertility treatment we can now harmonise and follow the beat together: Counselling > Clinics > Regulator, Ba Ba Boom.
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