I’ve recently been asked to join the Board of Infertility Network UK (IN UK). They asked me to attend a ‘taster’ meeting in June where I tried them and they tried me. We liked each other and I’m delighted.
IN UK is the national charity for infertility. On limited resources it does incredible and important work. Yet, despite going through years of treatment and spending way too much time on google (what infertile hasn’t?), I only found out about the charity relatively recently. There’s no doubt that I was probably too busy searching for the multitude meanings for spotting. Nor did I want to accept that I could really be ‘infertile’. However, if I’d been diagnosed with Cancer, Diabetes or another high profile disease, the charities supporting these conditions would likely have been the first place I would have turned. I can’t help wondering (wishing) what would have happened if I’d found IN UK earlier.
In addition to joining IN UK, I have also been getting involved in the campaign ivfyes to end the postcode lottery of IVF on the National Health. Around a month ago, I helped organise a patient focus group for them to explore other ways that fertility treatment in the UK could and should be improved. One of the main messages of the meeting was that there just isn’t enough consolidated or consistent information available to couples about the causes, options or support available for people experiencing infertility. This starts with GPs who are too often clueless about what advice to give despite it being the second most common reason that women of childbearing age go to the doctor.
A week later at my first IN UK Board meeting, I brought this up and was surprised (and then shocked) to hear that a while ago they produced a leaflet which did exactly that but they have found it very difficult to get doctors and clinics to agree to take it. We have to change that. On their first visit everyone who goes to their GP or private clinic should be given a leaflet (or even an app?!) to help them navigate the years ahead including the support they can get through IN UK. Because for so many women it can be years before they get a diagnosis and treatment, let alone a baby. And some women don’t ever get that. With better and more accessible professional information, advice and guidance, IN UK will be able to support many more people. That’s got to be a good thing and certainly something I wish I’d had.
So for this week’s question: let me know if there’s anything else you think needs changing. I’m in campaigning mode.