I was walking from East Acton to Queen Charlotte’s & Chelsea Hospital on Friday morning and started day-dreaming about what I would do if I won the Lottery. I do this quite a lot these days because funding for ICP is becoming harder to obtain, so my daydream always starts with me presenting my professor with a cheque for several million pounds. Of course, it would depend on what I won, but usually the amount I give her is not less than £5,000,000. The first time I imagined my Big Win I was a bit surprised to note that I thought of the research first, and then ICP Support and family and friends after that. I’m sure it doesn’t confirm my obsession with ICP. Absolutely not.
That Lottery win could fund so much: PhD students (approximately £120,000 for each one); ICP Support Research Midwife/Nurse; consumables for the research (just one Monica AN24 device for our BEATS study costs £3,000 and –80 °C freezers cost around £5,000); conferences to bring ICP researchers from all over the world together; a five-year project that follows the progress of children born to women who have ICP (rough calculation comes out at around £500,000); salaries for all the admin that has to be done (you have NO idea how much admin is involved in running research studies) – there is so much that could be done with it.
But. We all know the odds of me winning the Lottery are minuscule, so the strain of obtaining funding continues for my professor and Dr Peter Dixon, her senior scientist.
And that strain includes spending countless hours, weeks, months (as the kids say, I’m not even joking!), like so many other researchers, submitting grant applications for funding the research into ICP. As they do this, they know that they are competing with myriad VICs (Very Important Causes) and can only hope that their application will be successful. The disappointment when they are turned down is palpable amongst us in the research group, and I can’t imagine how Cath and Pete must feel. All that work – and whilst they are doing it (a lot of it in their spare time, because they still have their jobs to perform) time is ticking and funding is running out.
That walk led me to wondering how the public think research is funded. I may be wrong, but I wonder if people imagine that all medical research is funded by BIG Pharma – you know, those giant corporations like GlaxoSmithKline? Sorry to disappoint you, but it isn’t. If only… Instead, funding for Professor Williamson’s research and her team has come through various sources.
Put simply (and my apologies to those of you who know how this is done better than I do), the government funds research in two main ways: through the Medical Research Council (mainly science) and through the NIHR (the research arm of the NHS). Some of the money that the NIHR is given is further distributed amongst local clinical research networks (LCRN) in England, who can then support Trusts conducting research. Hospitals within those Trusts who are conducting research then ‘bid’ for their share of the pot of money. This means that some of my funding from Imperial College London, and all of my research colleague Marta’s funding, comes from the LCRN. It pays for our salaries to recruit women to ICP research at Queen Charlotte’s & Chelsea. But make no mistake, we have to earn that money. We need to recruit sufficient women to my professor’s studies to be able to justify our salaries – if we don’t, funding for us can be withdrawn.
Funding comes from other sources. Through King’s College London (who also part-fund me), through other elements of the NIHR such as their BRC Centres and EME bids programme, and through charities. As I write this, Dr Dixon is preparing to take part in the Prudential RideLondon for a lovely charity, The Lauren Page Trust. They have supported the professor’s work over the years, as have Tommy’s and PSC Support. I know there are many other sources too, but these are just a few of them to show how the professor’s work is funded. And of course ICP Support has also funded her research!
But as Pete (Dr Dixon) once said, “Research costs”, and it’s just not easy to get funding these days with so many other VICs competing for the money. Charities are not a bottomless pit, and neither is the NIHR. I won’t rant about Brexit, but it has had a detrimental affect on the European source of funding that used to be available for the professor to bid for.
Why am I telling you all this? I’m not sure really. I guess I just wanted you to know why I am trying to raise £60,000 before my 60th birthday by sharing with you just how hard it is maintaining research into ICP and why it needs our support. I suppose I also hope that it might make you think about how you could help contribute to that support, either by donating to my efforts or through your own fundraising .
If I don’t make my target it won’t be the end of the world, but how amazing would it be if I did! I can guarantee that a minimum of 50% will go to research into ICP to help prevent ICP babies dying or having to go into special care like baby Albus (Albie) in the photo. He is the baby that was waiting to be born (as mentioned in my blog post the other week) and he’s here! But his older sister Ruby Rose was stillborn because of the complications of ICP and we want to stop this. Albie’s parents, Katie and James, have also fundraised for the charity and we are very grateful to them for this support.
We have pledged to support ALL quality research into ICP, not just Professor Williamson’s, so what you donate/raise will make a difference – it could be the difference of life.
I’m not even joking.