Sometimes, it all gets a bit too much…

We had our Trustees’ meeting yesterday. Here’s a reminder of what they look like.

Ever wondered what trustees have to do? Well, we are all volunteers, we meet four times a year and have designated tasks to perform in between those times, such as fundraising (Jenny Hastings is in charge of all our running events for example), finance, marketing, publicity and governance.

Governance is incredibly important, because if we don’t get it right we can be closed down by the Charity Commission (as a large charity was in 2016), so we follow the commission’s Governance Code.

In short, as Trustees we must ensure that the charity’s aims are fulfilled. These are:

  • provide information and support to people affected by ICP
  • raise awareness of ICP
  • promote and fund research into ICP

and our objectives, as stated in the Constitution, are:

5. The Charity’s object (the Object) is the relief of sickness and preservation of good health among women affected by the liver condition of pregnancy called intrahepatic cholestasis of pregnancy (ICP) also known as obstetric cholestasis (OC), in particular but not exclusively by:

  1. providing information and support to such women and their families;
  2. advancing education for the public benefit of the condition;
  3. promoting, supporting and raising funds for research into the condition, the useful results of which will be disseminated for the public benefit.

Sounds simple doesn’t it? But have you ever thought about just how much hard work and money it will take to fulfil those aims? Especially when you add in our vision

  • That every ICP baby is born safely.

Start thinking about how you would do this…

We are trying to do it by making sure we are at conferences where we can get to speak to hundreds of midwives; collaborating with other pregnancy charities so that they know about us and can signpost women to us for information and support; getting me bookings so that I can go and speak to midwives and doctors about ICP (my next gig is January when I can be sure my hip is well recovered); writing articles for the media; and persuading well-known faces to champion us so that they too can raise our profile and reach more pregnancy women who don’t know that itching can sometimes be a problem for their unborn baby (now there’s a teaser for you – watch this space for some exciting news about a new Patron).

But OF COURSE we can’t do it without you, our supporters, and OF COURSE we can’t do it without money. We need that financial support – I am not busting my arse trying to raise £60k before I am 60 for the thrill of it. And trust me, it ain’t thrilling. It’s stressful and bloody demoralising when I see how little I am raising at the moment. Check out the total here – not great is it?

So in the meeting yesterday as we looked at our bank balance (approx £22,000) the age-old refrain came up about why our lovely Facebook members and followers (over 6,000) aren’t supporting us as much as we would hope.

We wondered:

  • Do they simply come to us and ask questions, have their babies and then go away and forget us before they think about donating – we understand that when you’re pregnant and trying to achieve a safe outcome for your baby, donating is probably the last thing on your mind.
  • Do they feel that £2 either as one-off donation or a regular monthly amount is too little (it isn’t, honest!).
  • What are we doing wrong that stops people donating?

I get that our financial climate isn’t great. I really get that. I get that some families are struggling simply to survive. But… statistically this won’t apply to everyone who follows us and even those who cannot afford to donate can help us by sharing our Facebook posts with their friends and family and encouraging them to support us.

IMG-20170114-WA0000BUT it’s not all doom and gloom.  We had a great year last year – have a look at our Trustees Annual Report (the baby on the cover and to the left of this text is Zac, who was born before 34 weeks because his mum had very severe ICP), but we are under pressure not only to keep it going, but to raise more money if we are to get those aims fulfilled sooner rather than later.

So a massive THANK YOU! to everyone who has supported our work; from those of you who give regularly to those of you (including our Little Itches) who have climbed mountains, competed in running events, held Afternoon Tea for ICP, donated money rather than having birthday or Christening presents, collected donations for us instead of funeral flowers (which blew me away) or simply recommended us to your workplace (we had £10,000 from The Wilmington Trust this time last year because an anonymous employee recommended us, and although I passed on my thanks I really wish I could have thanked them in person!).

We know of two recent stillbirths because of ICP and we don’t want there to be any more – but we know there will be. Please help us stamp out stillbirth because of ICP by donating to me (where it will all go to research) or here and if you’d like to win an iPhone8 have a look here!

You can also help by sharing our work with your friends and family or by letting me know what YOU would be doing to get the money in by commenting on this blog post or writing to me at

20150228_084221.jpgSorry for the rant – sometimes, it just all gets a bit too much…

But you know I will keep going!

Jen x



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