Should everyone stepping through their doctor's door enquiring about fertility treatment receive a counselling session? Probably not, although in most situations it would certainly be useful for them. Should everyone who has decided to go ahead with fertility treatment receive a counselling session prior to starting treatment? In my opinion, that is a definite yes.
The current stance of the HFEA (Human Fertilisation and Embryology Authority) is that counselling must be offered to patients. While this is a step in the right direction, I am finding it difficult to understand why it's not a mandatory element within every treatment cycle. I have heard the argument that not everyone wants a counselling session or thinks they need one. To me, as a fertility counsellor, this suggests a lack of understanding of what goes on during our sessions. I can accept this view from patients, as they don't know what to expect or how helpful the counselling will be. But the HFEA should know and appreciate the benefits.
I can't speak for every fertility counsellor, but when I meet with patients I check out where someone is right now within themselves and with the process. I acknowledge their journey so far, and offer support for the road ahead. So while it is true that there are and always will be some who feel they don't need to see a counsellor, it is often very surprising to them to find out that they did gain something from a session.
Everyone has their own reasons for seeking fertility treatment. I've not met anyone to date who has told me it was their dream as a young person to have a child in this way – or to freeze eggs or embryos, and so on – even though many are extremely appreciative of the opportunity it may bring. I think it's important to appreciate that for most people it takes a huge amount of courage to make that call or push open the clinic door. It's important for us to acknowledge the sense of loss they bring with them, often accompanied by fear, anxiety, confusion and maybe hope, excitement and optimism.
Fertility treatment is in most cases much more deeply and emotionally distressing than people ever think it will be. From before the start to after it ends, especially when cycles or pregnancies have failed, it can be exhausting. Very few people are adequately prepared for what awaits. Many will already have been through an emotional roller-coaster by the time they even arrive for their initial tests and screenings. In all likelihood, most of them will never have received any support when they do.
In my work, I see people going for treatment who are for the most part emotionally ill-prepared for it. Those who do know that people seeking fertility treatment can benefit from counselling – including the HFEA, the clinics, the consultants, nursing teams, patient support departments and everyone else involved – aren't telling patients clearly enough about how it could help them. It isn't enough to say 'if you would like to meet a counsellor you can' at the end of a clinical consultation, when a patient's head is already spinning, or at the end of a letter or email.
All of us working in the fertility industry need to consider the above and acknowledge that we have a far greater responsibility and duty of care to everyone undergoing assisted conception of any kind, for any reason.
At the recent PET talk 'The Real Cost of IVF' in April 2018, the most memorable element from all the speakers that I heard was the impact of stress, anxiety and suffering that many patients experience. In some instances, they go on to require support for mental health conditions. In the worst case scenario, there may be suicide attempts and even deaths. These are extreme cases, but even in less severe instances, this added stress places a burden on patients, their GPs, mental health teams and of course their relationships, families, friends and possibly work and productivity.
It may not be fertility treatment alone that causes this distress. The patient may be susceptible or suffering prior to treatment. However, it once again comes down to a duty of care. We know this treatment is powerful and the emotional impact of fertility treatment is massive. It increases with the number of attempts and even further with the number of failed attempts, culminating in huge despair when treatment does not work.
I am not saying a mandatory counselling session will magically make things better for everyone. Nor will it prevent every negative situation from happening. But I truly believe that being more prepared and knowing in advance that support is available will be extremely helpful and beneficial to patients.
I could go on to talk of many examples of patients I've met prior to treatment who have come back for additional support. Or of those who sadly never took up the offer of counselling because they didn't think they required it at the time or didn't want to take up a space that they felt someone else would benefit from more than them. Or of how many people I've met who have had multiple failed attempts overseas, or even in UK clinics, and never received counselling support. How many times I've met people who tell me they feel like they are going mad, that they are stuck or their lives have been completely taken over with this quest, along with the financial crisis and debt they may now have too.
The majority of people coming into clinics, seeking or requiring fertility treatment are hopeful, compliant, trusting, emotionally vulnerable and oblivious to what lies ahead. Receiving impartial support from a counsellor can be a lifesaver in helping them with their decision-making and choices. Many clinics do offer high levels of support, especially in light of certain situations, but some don't. For patient consistency and to enable all clinics and teams to feel supported, making counselling mandatory will help.
The details of the HFEA's support pathway, an objective of its strategy for 2017-20, is presently in the early stages of development with representatives from multiple organisations within our fertility sector. One simple addition to it will be to include a mandatory counselling session for everyone who will be having treatment before they start.
As counsellors, we spend our lives listening to people and truly hearing what they say, and evaluating with them what will be helpful. HFEA, please listen and hear what I've shared on behalf of my colleagues and patients and put in place what will be helpful for them. What greater feedback could you ask for?
Article: 8th May 2018 Appeared in BioNews 948 by Anthony Ryb
Anthony Ryb is an experienced bereavement and grief counsellor with a special interest in infertility and being childless not through choice.