Berenice Smith, of Silverwood Close in Cambridge, went through six cycles of fertility treatment without being able to conceive. Health authorities in Cambridgeshire are considering plans to remove NHS funding for IVF treatments. Here, she tells her moving story about trying to have a child, and why being unable to do so can be so devastating.
There is a lot of debate in the press about the proposed cuts to funding for IVF treatment and with this, a lot of opinionating about its worthiness, often from those who have no experience of this.
One example is Philip Hodson who wrote in the News (August 9) of his pleasure that cuts were being made and attributing IVF to overpopulation. This is one of many views I have heard that lack research or evidence.
The connection between overpopulation and IVF is flimsy at best. Overpopulation is an issue with families across the world, along with adequate birth control.
IVF is still a developing area of medicine. With one in ten couples seeking answers to conception problems and one in four remaining involuntarily childless, IVF is far from a contributor to overpopulation. Some remain without children for life and I am one of these women.
National Institute for Health and Care Excellence (NICE) guidelines are given to clinical commissioning groups (CCGs) based on the available funding, as opposed to being an extra cost.
In January, MP Steve McCabe requested a parliamentary debate after being made aware of CCGs making up criteria that wasnt included in the NICE guidelines. CCGs sought to control costs by setting rules such as penalising a childless partner because the other partner had a child by another relationship.
Mr McCabe spoke about a shocking case in his constituency. A couple who were about to start IVF had a natural miscarriage after four years of trying to conceive. They were told they were no longer eligible because of the miscarriage.
To reiterate, NICE do not set these guidelines, CCGs are able to set their own which brings about the postcode lottery.
And what of the costs? Compared to campaigns and solutions offered to self-inflicted illnesses, IVF is low-cost.
Patients wanting help to have children are seen as demanding by Mr Hodson and other naysayers, yet the World Health Organisation terms infertility as a disease.
People should bear these points in mind regarding infertility and its treatment:
Why do I know this? For 15 years I sought to become a mother. Our doctor concluded that we needed ICSI, a similar treatment to IVF.
But Cambridgeshire CCG didnt offer it at the time. To be told this is devastating. To be told of a solution to a major health problem and then told it is not available is devastating.
We had to pay privately which had an affect on my marriage and the treatment cycles, of which I had six.
To give an idea of the time it takes to go through IVF or ICSI, an average cycle is about six weeks of injections/tablets and usually requires at least two surgical procedures, one of which is often under general anesthetic.
During the stimulation stage the patient will often be required to go to the hospital every other day for scans and then surgery. An average egg collection is eight eggs. Women naturally produce one or two. Many hospitals will aim for double this to increase their chances of success.
Over-stimulation can result in a life-threatening condition called ovarian hyperstimulation syndrome, which I experienced. All of this in the hope of producing a baby, that other people are able to do. This is not a luxury. No-one would ever want to go through this.
Added to this, I had to juggle the demands of working full-time, asking for time off and standing on a train to commute to work. I was left alone to do more than 120 injections myself over eight weeks as my husband worked overtime. Attending the appointments alone was incredibly isolating. And all because someone deemed NICE guidelines to be optional when funding was there.
Infertility has no boundaries. It doesnt care about bank balances, about where we live, if we have a job or not and hasnt heard of postcodes. And it can affect the elderly that Mr Hodson speaks of because those who are involuntarily childless also grow old, but we dont forget our losses.
I dont know where Mr Hodson expects us to disappear to. Its a cruel and tempestuous unknown that is easy to ignore. Yet ignoring it is doing a huge disservice to those who summon up the courage (and that takes guts) to see their GP.
It is very easy to sit at a keyboard, content with naturally conceived children or having chosen a childfree life, and assume that IVF is a luxury. For me, a luxury is a holiday, a nice meal out or a concert.
Luxury is not handing over the best part of my bank balance or spending two weeks waiting for a positive pregnancy test and the devastating aftermath when it doesnt work. One might say its not worth spending the money at all but to be denied pregnancy has bigger implications, not least to the children who may never be born.
Ignorance lets down the one in four who find themselves as we did, desperate to at least give it a go. Its not measurable in monetary terms.
Neither can those who are involuntarily childless just adopt as is often assumed. Adoption is an entirely different choice with other criteria that can cause huge turmoil for someone trying to come to terms with not having their own children.
If it were so easy, why doesnt every fertile couple take this route first? It strikes me that the NHS is struggling with obesity, drinking-related injuries, smokers yet to reform and those unable to judge when to see a pharmacist or A&E. Yet men and women who find themselves, through no fault of their own, unable to be parents are being made scapegoats.
The American Psychological Association concluded that 50 per cent of women who had gone through failed IVF suffered PTSD on a level that could be compared to soldiers who had fought in battle.
My mental health has suffered so much and continues to be challenged each day. To read ignorant comments makes me despair over the sheer idiocy that surrounds a subject that needs to be talked about.
IVF is the single most traumatic thing I have been through but it was the only choice we had. Although six cycles did not give us a child, we are adjusting to life without children and finding our place in society that seems so hopelessly judgmental.
I urge anyone feeling strongly enough to reach out and contact their MP and the Fertility Network UK, which is campaigning too. It takes courage but it can make a difference.
To find out more about Berenice's work to raise awareness about involuntary childlessness visit https://walkinourshoes.net/blog/2017/8/16/inspiration-joining-forces.
Read more here:
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