We have achieved so much as a charity. For example:
- Did you know that, when we started what was to become ICP Support, no women were being diagnosed with the condition intrahepatic cholestasis of pregnancy (ICP)? Now, nearly all UK health professionals know that itching in pregnancy is something that needs to be investigated.
- Did you know that we had no drug to treat the condition back in 1991? As a result of women from this charity being prepared to help with research into drugs, we now have UDCA (urso), which may be much more protective for babies than was first thought.
- Did you know that this charity helped kick-start the first research into ICP in the UK?
- Did you know that we are associated with two major drug trials for ICP? These are PITCHES and a new trial – working name TURRIFC. And did you also know that ICP Support was involved in the design of these trials?
- Did you know that we provide 24/7 support to women who have ICP via our social media groups? We have supported thousands of people affected by the condition (we even have an Australian support line!).
- Did you know that we wrote a learning module on ICP for the Royal College of Midwives?
- Did you know that until September 2015, all of our charity’s’ work was being conducted by a tiny group of volunteers, some of them working every day of the week on ICP?
But did you also know that our presence as the UK’s leading charity for ICP isn’t guaranteed by any means?
We had a Trustees’ meeting on Saturday, and as well as the fun bit of catching up with the publicity about our new Patron, Helen George, and an article on ICP from the Mail on Sunday in Scotland featuring one of our lovely members, Libby McAdam, we also had a lengthy financial review to conduct. And that wasn’t such fun.
The bottom line is that we need to increase our income. Running the charity costs us £4000 a month, and sometimes we don’t achieve that. If we continue to have months like this we’ll need to pare back what we do, such as attending conferences, where we get to speak to hundreds of health professionals about the condition.
Cutting back would mean that we can’t implement our strategic plan, which includes:
- establishing a more accessible support line
- having regional representation, which will enable us to hold training days for health professionals that women with ICP would also be able to attend and meet each other at
- funding and influencing research into ICP
- continuing to raise awareness of the condition
Income has never been a problem before because people gave (and still continue to give) their time for free. For example, our website was originally designed at no cost to us, saving us thousands of pounds, but it’s so big now that we can’t maintain it free of charge.
And because we are doing more as a charity the administration has increased, so we need to employ staff to help run ICP Support. We only employ the equivalent of just under one full-time person at the moment. I get paid for two of those days, although I actually work the equivalent of four days a week. I genuinely don’t mind this because it all began as my baby, and I am prepared to do whatever it takes to keep us going.
But it isn’t my baby any more. It belongs to all of us, and when I eventually go (because that’s what good succession planning is all about) we wouldn’t stand a chance of employing a CEO who’d be happy to do much of the work for free! And if we want to grow and implement the things I mentioned earlier, then we will need more staff to do this (perhaps a professional fundraiser – I’d be keen to hear your thoughts on this).
For us, the key issue is that we can continue to offer support to people with ICP and to provide them with the correct information about the condition. It’s vital that we are here for you and your family in the future and to fund research because this condition doesn’t just stop at pregnancy.
Researchers now know that it carries future health implications, such as gallstones, Type 2 diabetes, cardiovascular problems and a (very small) increased risk of liver cancer. These risks apply not only to those of you who have ICP, but to your children too. Those of you who have girls may see your daughters developing the condition, while your sons may pass the genetic changes on to their children (we think I inherited my genetic changes from my dad). We also still don’t know all the possible implications of ICP, as researchers still need to better understand the condition.
To get some of the funding we need we can apply for grants for certain things (the regional presence that I wrote about, for example), but they are really hard to obtain – we’ve almost lost count of the applications that have come to nothing. Grant givers won’t cover core costs, such as administrative salaries, rent, telephone line, computers, public and liability insurance etc. We are allowed to top-slice a certain amount from a grant for admin costs, but that still won’t cover everything.
If you want to see what running a charity costs, have a look at our accounts (this year’s accounts will show a reduction in income as it stands at the moment). Better still, have a look at larger charities’ accounts using the Charity Commission search tool to see how much it costs them to run their organisations. You might be a little surprised. (Interestingly, not all charities publish their accounts on their websites as we do.)
It wasn’t an easy Trustees’ meeting. Deep in my heart this charity is still a little bit ‘my baby’, and I took our Treasurer’s concern that we may not be around in 12 months’ time very hard (which is why Founders have to ensure they have the right Trustees around them to tell it like it is!). Her words have stayed with me for the last 36 hours – hence me writing this at 4 a.m., when even the birds are still asleep. I think it’s important that we share all this with you, because despite our outward-facing appearance of being quite a large charity, we really are only teeny-tiny and we need help.
So please: if you, your family or a close friend has benefited from our charity – for example, if you’ve used our support line, asked questions in the Facebook groups or even private messaged me, think about supporting us financially. We are so very grateful to those of you who already do this, but we do need more of you to help sustain (and grow) our charity.
You can find out how to donate or raise funds here.
It’s 6 a.m. now and the birds are singing – it’s a lovely sound that always fills me with hope for the new day. Please help us to make sure that ICP Support is around for many more new days.