The fact that so much of the research may lead nowhere or may take a long time to get anywhere and be too late for the children in need of treatments now, makes it a more challenging proposal.
Persuading people to give money to support research is a little more difficult than selling the idea of donating to the hospital itself or of contributing to the purchase of machinery that can help save lives in the short term. The fact that so much of the research may lead nowhere or may take a long time to get anywhere and be too late for the children in need of treatments now, makes it a more challenging proposal. But one of the arguments that emerged which I found most interesting was how today's research can make a marked difference to the outcomes of today's patients through the culture of research that it generates around the patient, characterised by such things as a better frame of mind and work practices among the healthcare staff, greater availability of treatments through trials, and a wider range of information available through the research network. As neonatologist Colm O'Donnell told me:
'Surely to stay on top of developments in your specialty you have to be involved in the science that backs up what you do and drives on what to do, and refines care and improves it.'
Returning to the document itself, the finished product, as printed by the Children's Medical & Research Foundation (CMRF), is very different from the final draft that I submitted, and given the many people and consequent layers of communication involved, and the changes in personnel since the brief was first outlined, I suppose that's to be expected; but it is a little frustrating and disappointing to put so much work and heart into something only to see 'the client' (if it only it was so coherent) alter it. However, as long as the document helps to raise lots of money to support the research being done I'm OK with it, and from a Penhire perspective I'm pleased that at the first review stage the Board of the CMRF, which included Maeve Donovan, was very happy with, even excited by, the draft presented.
Here are some of the elements that I developed for the document, some of which are gone, some of which remain: