Social Justice and Infertility a personal view

On 1st November 2017 I was delighted to be asked to speak on the panel at Fertility Network UK’ event at the Houses of Parliament:

I’m delighted to be on this panel because this was my world for nearly ten years.

I’m not a health specialist, I’m not a parliamentarian, although I am a founder-member and candidate of the Women’s Equality Party.

We are creating our new policy for Equal Health and Medical Research,

Which will be ratified by our party’s 65,000 members and supporters. That process hasn’t happened yet, so I need to be clear that I am here speaking personally.

speakers at the Politics of Fertility Debate

I’ve been involved in tackling social justice through arts for over 20 years and I never expected to find myself talking about social justice in such a forum as this.

Like most people I never expected that I’d have anything to do with IVF. I didn’t know the term recurrent miscarriage, or that after 7 pregnancy losses, I’d be referred for IVF – but I’d have to pay for it, 3 cycles all unsuccessful.*

Today people wanting to start a family have to overcome a series of obstacles: patchy and incomplete information, a work culture that still often resents pregnancy and parental leave, a gender pay gap that shows no signs of going away, the gig economy, the housing crisis – and that’s just for starters. Imagine you’ve negotiated all of those and decided you will try for a family and then here you are, confused, disappointed, possibly fearful being told by your GP that there is help but – oh dear – you don’t live where that help is prioritized. A relatively low investment from the NHS for a life-changing treatment is not available to you, unless you commit what is personally a staggering financial sum. For example: in Lewisham where I now live, where the average salary is £25,000 and rent is £12000 per annum, how are you going to find those thousands?

By ignoring the NICE recommendation and not adopting the Gold Standard, we are allowing an unjust and cruel entrenchment of inequality, that has wider consequences to the people it touches. I know from personal & peer experience that infertility is a disease  that keeps on giving long after the child-bearing window closes or the money runs out. Its associates: depression, relationship stress and breakdown, family tension, shame, guilt, grief, debt are unpredictable, intermittent and cumulative visitors: during bereavement, redundancy or when friends have children and then grandchildren. The damage can be chronic.


What kind of a society denies a treatment arbitrarily?

It’s not just about money, there’s a societal bias going on, there’s an attitude problem and we have to ask what the link is between that attitude and the fact that women’s health and support for medical research into women’s health, has been the poor relation in health  – since forever.

Don’t get me wrong- I know, as does everyone in this room and everyone who has experience of infertility and subfertility, that fertility is very much a man’s issue too.

But we also know how it gets reported in a media fixated on punishing women and manipulating their bodies, and we know from our experiences that women’s bodies and psyches are on the front line when it comes to treatment. And women themselves are blamed for delaying their fertility by the very establishments and structures that force them into that delay.

So what would I the layperson prescribe? I have 3 wishes and one vision:

  • The Gold Standard represents a small piece of certainty in an IVF landscape of shifting horizons and icebergs of disappointment. It doesn’t fix it for everyone but the notion of fairness it offers does help in coping with the aftermath.
  • Provision of 3 cycles on the NHS will open up a route to better tracking of people and their outcomes so that after-care improves: 7 lost pregnancies and 4 unsuccessful cycles and my partner has never been offered any follow up.
  • Thirdly, the fact of the Gold Standard would create a forum to establish leave of absence policies with employers and support schemes for self-employed people to cover time out for treatment and recovery.

The vision? The open acceptance of the Gold Standard will see infertility become a part of reproductive life so that as a society we needn’t maintain a taboo around it. We need to democratise treatment and open up the discussion about parenting in all its forms, so that the next generation is free to make informed choices abut how and when to have a family – if that’s what’s right for them.

* yesterday I said 4 cycles but I’ve realised based on the discussion that in fact it was 3 because of the definition and confusion around it ( 3 cycles with 4 or 5 rounds).

It was a very honest conversation and you can find out what discussion the event generated here.


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