12 December 2016
ByAppeared in BioNews 881
By the far the most sobering experience of my life so far was learning that I am unable naturally to make my wife pregnant. This knowledge has led me to dark thoughts on a daily basis: anger, guilt, isolation, jealousy, emasculation and some feelings I would rather not put down on paper.
When I sought solace, I was shocked to experience hurtful pockets of ambivalence that made me scurry quickly back to my little world of silence and loneliness.
These feelings were exacerbated each time we received a 'curveball' – from regular joyful announcements of happy news to seeing a negative pregnancy test result after a cycle of IVF treatment. Then came the last and biggest curveball – learning just before treatment that our NHS-funded IVF allocation had been slashed from NICE's recommended three cycles down to just one, apparently at the wishes of our local community via public consultation.
This news, and the realisation that our single cycle might not work, made us far more emotionally dependent on that reduced entitlement. Our anxiety and mental health plummeted towards uncharted depths of sadness, and it was at this point that the thought was firmly planted in my mind: 'When this is all over, I am going to do something about it.'
You'd be forgiven for wondering why we didn't know about this consultation. Despite us being 'in the system' when it was launched, closed and the announcement made about the reduced service, nothing came through our letterbox. At no point during this time were we alerted to the consultation by our GP or anyone at the Luton & Dunstable Fertility Clinic.
Sadly, our first and only cycle of treatment on the NHS ended with a negative result. While we had tried to prepare ourselves to treat it as a learning experience for future cycles, the negative result triggered further sadness and feelings of dark isolation. Knowing that private funding was the only option for us was yet another trigger for further deterioration in our mental health. But our primal drive to become parents nudged us on towards a second cycle of treatment.
During that second cycle we learned of a new consultation about to close – this one to totally remove NHS-funded treatment in all areas of Bedfordshire except for Luton (see BioNews 847). Even though NHS treatment was no longer on the table for us, we took major exception to this announcement. The curveballs we had experienced were galling enough, but had we been in the system only to be told that the single cycle on which we were pinning so much hope was to be snatched away from us, I honestly can't imagine how we would have coped.
With this in mind I decided that, as soon as we had completed embryo transfer, I was going for this with all the drive and tenacity I could conjure up during such a challenging time. Up to this point, I had never heard of Clinical Commissioning Group (CCGs), and it was only after a lot of research that I learned more about the process of decommissioning public health services.
Why did no-one in Bedfordshire speak out about the last consultation? Surely this silence made NHS IVF treatment the low-hanging fruit for budget cuts. Then I remembered how earlier I'd scurried back to my own world of loneliness and emasculation…
With zero lobbying experience, a natural aversion to limelight, and no prior interest in social media, I knew I was about to venture far from my comfort zone. I reached out to local and national TV news and radio stations to raise the profile of the intended decision, and promised to answer all the questions they could throw at me, no matter how personal.
I started to receive requests for interviews as soon as the consultation closed. Before each interview I had sleepless nights thinking through answers to every tough question I could imagine. Luckily for me, two of the earlier interviews were supported by Sarah Norcross. Knowing this and hearing her contributions gave me a much-needed injection of confidence to get through, and each subsequent interview became a little easier.
I also took advice and talking points from two great charities: Fertility Network UK and Fertility Fairness, and wrote to our local MP, Andrew Selous, who, along with those charities, proved to be a formidable partner in the effort to reverse the intended decision. (What a sad state of affairs that there needs to be a charity called Fertility Fairness?)
One thing that came as a really hurtful shock to me during this process was that there are vocal people out there with strong opinions against the provision of NHS-funded IVF treatment – despite many, if not all of them, having their own naturally conceived children. Learning this added fuel to my fire.
I will never know if any of the emails I sent to each of the voting panel members at Bedfordshire CCG, or the direct questions I asked them at their AGM (annual general meeting), made any difference. I will never know if the TV or radio interviews I scraped through by the skin of my teeth were seen or heard by the CCG or if they had any influence at all, but I'm pleased to say that in the end the campaign was successful (see BioNews 879).
This is not the end – NHS funding for fertility treatment is under threat across England. If you believe, as I do, that this is unjust, I would urge you to get involved with campaigning on a local and national level. Write to your MP and urge them to attend and speak at the Backbench Business Committee debate in parliament on 19 January 2017 on this topic. If people like you and me don't speak up, then many more infertile people will suffer.