National Fertility Awareness Week #IVFGoldStandard why it matters to you and me

Today Fertility Network are talking about #IVFGoldStandard, they will be releasing data on Fertility Fairness’ 2017 NHS IVF funding data: revealing the best and worst places to live in the UK and campaigning for #IVFGoldStandard everywhere. 

I write this post with a heavy heart because where I live we have no funding and we are failing on the IVF Gold Standard. This means that anyone who wants to go through the doors of Bourn Hall, the founding place of pioneering IVF and infertility treatment must pay thousands of pounds per cycle to do so. If you're a reader of this blog, then you'll know that my husband and I spoke out in the local press about this. Below is the letter we wrote in the weeks leading up to the decision by the CCG in Cambridgeshire to end #IVFGoldStandard and access to IVF treatment in our area. For obvious reasons it makes me upset for you and me, but also because I have been lucky to have lived in a city, Cambridge, that is at the forefront of science and medicine with the incredible University Hospital, Addenbrookes, less than a mile from my home and now it's become exclusive to those who earn a lot in what has to be the more expensive place to live in the South East outside central London. Treatments for infertility are complex. It's important to find the causes of infertility to understand options and give resolutions, be that female infertility or male infertility. 


Dear MP (copied to our local paper, the Cambridge News)
We are writing from your constituency to bring to your attention that MPs will be debating the decommissioning of in vitro fertilisation and other NHS fertility services on Thursday 19 January at 1.30pm.
As survivor of 6 rounds of IVF, of which one cycle was funded by the NHS and a tax paying resident of our country, we would like to request that our views are represented and ask if you will be attending this debate, particularly as Cambridge IVF and Bourn Hall, pioneers of IVF falls in your constituency, not to mention Addenbrookes of course.
It is very easy perhaps to be distanced from this and we are concerned that MPs hear from those of us who have gone through treatment. There is an assumption that IVF is a luxury and this has been said to me many times. That children are not essential for living. For us, a luxury is a holiday, a nice meal out or a concert. Luxury is not handing over the best part of my bank balance, raging headaches from hormone treatment, bruised skin from 120 injections or spending two weeks panic stricken waiting for a positive pregnancy test that may never come. Children are not essential we agree, but solutions to painful infertility problems and the option to be try to be a parent are an ethical right and surely have been since IVF was created. It should not be set by demographics nor income, and goes against the principles of Bevan and the foundation of the NHS as ‘medical care free at point-of-need to all Britons’. 
We began our investigations some 15 years ago. The NHS concluded that we needed ICSI. Except our PCT didn’t offer it at the time. To be told this is devastating. It’s dangling carrots to donkeys in the most tragic of circumstances. We scrapped together what we could, cancelled holidays and stopped anything but the most essential repairs to our house, living with temperamental heating in the depths of winter and missing tiles on the roof. My husband worked every weekend to the detriment of his health. All this to pay for our private treatment. Left alone to do injections and attend the appointments by myself was incredibly isolating. In the research for a design piece about childlessness, Walk In Our Shoes, we have heard from couples who have taken second and third jobs to afford private IVF which puts fragile mental and physical health under tremendous strain, this in addition to relationships already rocked by the thought of what may or may not happen. This is the bleak reality that faces men and women if they are denied NHS support. 
The repercussions to my mental health were to hard to articulate but it’s fair to say that I agree with the American Psychological Association’s survey which concluded that 50% of women who had gone through IVF suffered PTSD on a level that could be compared to soldiers who had fought in battle. In cutting IVF, we are certain that the strain on mental health services will only increase as people try to accept a life they were not ready to face. And adoption is not the answer - it’s a very different route to having children that bears little relation to IVF and has it’s own set of criteria including being 'over' infertility if such a thing was possible.
Infertility has no boundaries. It doesn’t care about bank balances, cares not a jot about where we live, if we have jobs and hasn’t heard of postcodes. It’s cruel and tempestuous unknown that we fear MPs and the NHS believe can be tamed by being ignored. Yet ignoring it is doing a huge disservice to the one in ten couples who will summon up the courage (and gods, that takes guts), to see their GP. It’ll let down the one in four who find themselves as we did, desperate to at least give it go. 
If you or your partner had an illness (and WHO defines infertility as a disease), and you discovered that your local CCG had scrapped the funding required to ensure you could get care and the only way you would receive treatment is by paying up to £12,000, or moving to an area that does offer the care on the nhs, what would you do?  Could you do it? 
Rather than think of the cost saving, think about the amazing opportunity that IVF gives, it’s not measurable in monetary terms just as it can’t be compared to adoption or surrogacy. It strikes us that the NHS is struggling under the weight of obesity, 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. Is it really ethically right to put a price on childlessness?