Campaigning Mode

by | 13 Jul 2014

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.

www.thepursuitofmotherhood.com

8 Comments

  1. Lesley Pyne

    Congratulationz Jessica. I’m so pleased you’e on the INUK Board. Having done it myself as a reprendntative for MoreToLife I know what great work they do & how much theu need people like yourself to raise the profile.
    I agree that Drs need more info (plus bout MTL) & if there’s anything I can do to help you please let me know.
    Lesley x

    Reply
    • thepursuitofmotherhood

      Thanks for the encouragement Lesley. Proud to be following in your footsteps. You have paved the way in your support for childless women and I hope together we can do even more. I’ll definitely keep you posted on progress. Jessica x

      Reply
  2. Beth Beamer

    One word to describe you Jess: inspirational.

    X

    Reply
    • thepursuitofmotherhood

      Ah thank you – but there’s much much much more work to do before I can really claim that.

      Reply
  3. kiftsgate

    I agree, very inspirational. I think it’s fantastic that you’re campaigning! Keep us updated. x

    Reply
    • thepursuitofmotherhood

      Thank you too and I definitely will. Your Fertility Proust Questionnaire is now live!!! Jessica

      Reply
  4. jnorland

    Campaigning issues . . . Don’t know enough about the issue to say. I do know that a friend who was counselled for infertility was very grateful that from Day 1, her doctor said, ‘you may want to start thinking about adoption / surrogacy early, because the time, energy, and money you would invest in numerous cycles of IVF are a finite resource — and adoption can take years to arrange.’ (i.e., the doctor was advocating limiting IVF and considering other options early.) I don’t know what kind of counselling couples receive in the UK, but perhaps mandatory counselling about the range of family-creating options out there, if it isn’t provided?

    Reply
    • thepursuitofmotherhood

      In my opinion that’s brilliant advice from a doctor and I think mandatory counselling at the beginning of the process to talk couples through all the options would be a great idea. I know it’s hard for couples to contemplate the other options when they’re desperate for their own biological baby but I have found it even harder to start all over again on a new process after so many years of IVF disappointment. A way of navigating through that would be really helpful. Jessica x

      Reply

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