Page URL: https://www.bionews.org.uk/page_135793

The case for mandatory fertility counselling

8 May 2018
By Anthony Ryb
Anthony Ryb is an experienced bereavement and grief counsellor with a special interest in infertility and being childless not through choice.
Appeared in BioNews 948

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?

SOURCES & REFERENCES
RELATED ARTICLES FROM THE BIONEWS ARCHIVE
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HAVE YOUR SAY
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Comment (User:112995 - 08/05/2018)
I would like to support Anthony Ryb's case for mandatory fertility counselling right through the fertility treatment process. I conceived after 5 attempts. I had an mandatory initial counselling session to ensure I was " fit to have treatment" and one other which Ii requested as I needed a sperm donor and was having problems with the choice . Other than that I struggled through two years of grief, pain financial hardship and an inability to known when and how to say enough was enough. Fortunately I conceived on that final treatment. I wish I had been encouraged to do more talking about what I was going through and how I was coping. I told very few people other than close family and one friend abou my treatment so had to put on a brave face when each attempt failed. I went to work having just had treatment for hyperstimulation because I was too scared to stop. Fortunately, I have a wonderful son and am eternally grateful to the clinic for encouraging me to persevere. However, I am resilient although I still think about the process with horror. There are many who not so resilient and I can imagine many relationships suffer as a result
Comment (User:120925 - 09/05/2018)
I completely agree with Anthony's article, there definitely needs to be more support for those going through fertility treatment (and even before that point). Having struggled to conceive myself, and going through ICSI and multiple frozen transfers to have my son, I understand the heartbreaking impact of struggling to conceive and the negative thoughts and emotions that come with it. I retrained as a life coach after having my son, and now work specifically with people going through fertility problems, and I see the difference it can make to their journey having the emotional support that they need. I also run support groups, which offer much needed peer support and are another service I believe that clinics should offer. I am working to increase the level of emotional support that patients receive, and believe that mandatory counselling sessions would be a huge step forward in providing that support. I really hope that the HFEA are able to move someway towards doing this.
Comment (User:121547 - 09/05/2018)
Thank you Anthony for your article and for raising the profile of emotional support and the part counsellors can have in working therapeutically to alleviate distress The majority of people have described the experience of having assisted reproduction treatment as one of the most shattering they have had to face. The experience of depression and anxiety is common at over 50% with the likelihood that many will have the adjustment of unsuccessful treatment and potential childlessness leading to a traumatising experience. I am excited and optimistic that emotional support is now firmly on the agenda at the Human Fertilisation and Embryology Authority but I make a passionate plea that licensed clinics should 'provide' not just 'offer' counselling. Counselling should be available before, during and after all treatments and we should stop the one session rule that applies in some places. Our patients deserve more than one session and as professionals therapists we need to unite promote the benefits and challenge clinics to change.
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