I want to post about a consequence of the Brexit result that many people won’t have thought of: the impact on treatment and support for rare diseases. Since 1994, since the age of 22, I have lived with cerebral vasculitis, a 1 in a million diagnosis, which causes day-to-day symptoms similar to multiple sclerosis, but with the added bonus that it could kill me in a flash. Other forms of vasculitis are less rare, but all are rare. Vasculitis = inflammation in the blood vessels. In my case in my brain. Vasculitis is very under-supported by health services worldwide, causing huge difficulties and delays in diagnosis and treatment, which often leads to death. In the UK cuts to funding have impacted on cross-border referrals for vasculitis patients in Wales, seeking to go to centres of excellence in England, to get diagnosis and/or better treatment and support. And likewise for Scottish patients. Equally many patients in England have a considerable financial outlay, for life, for prescriptions of steroids and chemotherapy drugs that keep them alive. For life. No they don’t get these for free. Charities like Vasculitis UK are working to improve things, but it is a very hard job. Much of their funding and research comes from Europe, both in terms of money, but also working with colleagues elsewhere, to uncover new treatments, and improve support for patients. It is very unclear how this is going to be affected. My friends who are actively involved in Vasculitis UK are very worried. Before any Brexit-er tells me it will be ok, there will be a way, that it isn’t directly EU, or that the UK will replace the funding: no, we don’t know what will happen. And for such a rare diagnosis it is hard enough to get support as it is. The relationship with Europe for vasculitis research and funding is important. And right now the people who are working to save lives are very very scared. This makes me sad 😦 And scared myself.
Posts Tagged ‘neurological disease’
As the month nearly comes to a close I’m winding up my AcWriMo activities. And as always around this time I thought I’d look back on how things went.
At the start of the month I had three goals outlined, all involving academic journal papers in various stages of development.
Two of these goals were fully or better accomplished. One was revising an accepted paper, which I turned around in the first week and emailed to the relevant editor. Another was starting to convert a conference paper from spoken talk with PowerPoint slides to a written version suitable for an academic journal paper. I set out only intending to start this process, the first draft of converting the spoken text to words, with much further development and enhancement required later. But as things turned out I went far beyond this, developing many sections of the paper more fully, and having it much closer to possible submission to a suitable academic journal.
The remaining goal was to finish developing an already mostly written academic paper, ready to send to a colleague to read through and give suggestions before I develop it further prior to submitting to a journal editor. This was the only goal not fully completed, although I managed to overcome a major impasse, working out a new strategy for approaching one of the main case studies in the paper, which I then largely wrote up. There are many sections still to be finished off and polished, and it’s not ready for that read through yet. But it is well advanced, and I should be able to get it ready to email off by Christmas, with hopefully the aim of submitting it to an academic journal paper sometime early in 2015.
All this was achieved against the backlog of struggling for much of the month with my neurological illness, more so than usual. There were several weeks when I could barely manage an hour of writing total. And then there were better weeks when I might manage 2-3 hours total if lucky, again done in 1 hour bursts.
The main strategy I found for keeping going when well enough was to think in terms of which goals I would target in specific weeks. So I had in mind key activities for the first week, and the second week, and so on. This broke down what might still have been quite a daunting task – three quite ambitious goals for the whole month for someone so very ill with so limited time – into more manageable chunks. And if I put in the time, even in isolated one hour chunks here and there, I could make slow but steady progress. Breaking it down into week by week goals also helped to keep the momentum going, and that I had to get on with things, lest time slip by and be lost. But I did have to rest when too ill.
Academic writing month can be a wonderful focused time, but for me the best thing about it is the good habits it can help to develop, which can be applied throughout the year. So the importance of making achievable goals and to-do lists, breaking down larger tasks into manageable chunks, and keeping going, even in small bursts, to make progress in spite of time and other limitations.
So I’m very glad I took part again. I look forward to taking part in 2015!
One thing I learned in my PhD is that it’s important to push yourself to try difficult things. It’s possible to get through an undergraduate degree by always playing it safe. Even a postgraduate Masters can be mostly completed in your comfort zone. But when you get to PhD level, it’s only by trying difficult things, and tackling them head on, that you get the best results.
I’ve been trying to apply that since completing my PhD in 2010. For example today I submitted a proposal for a colloquium on library history research to be held in London in early 2015. It would be much easier for me not to go. I have a severely disabling neurological disease, and travelling all the way there, even giving a talk locally, would be very difficult. But I know that I can contribute a lot to the meeting, and so I sent in a proposal. And if I managed to attend the meeting and present my paper I’d get a huge sense of personal achievement.
Likewise the other day I put in a proposal for a conference to be held at Inverness in a few months time. Ok Inverness is not as far away from me as London, but it would still be quite a trauchle (good Scots word – think ‘struggle’) for me to get there. But again I think I can contribute a lot to the conference, it would be nice to get the research from my Masters dissertation ‘out there’, and it may help to see it eventually in print form in an academic journal.
This is also why I’ve been pushing to get my research published in journal articles. Again this is a difficult thing for me to tackle. My progressive neurological disease causes significant cognitive problems, such as considerable difficulty reading, concentrating, general confusion and dementia-like memory problems. So preparing journal papers, and dealing with revise and resubmit for example isn’t easy. But I do it because it’s challenging and rewarding, and seeing my research in print is ever so satisfying. I currently have two papers accepted by journals and awaiting publication, another one being considered by an editor, and another one where I was offered revise and resubmit, and will be doing that. For the same reason I aim at ambitious journals. I have time, hopefully, and would rather wait and work to see my paper published somewhere really good, than go for an easier, safer, less satisfying result.
Of course doing all this requires confidence. But generally that’s something that grows during the PhD process, and culminates in the successful passing of a viva. And then as you get first one paper accepted and published, and then another (I’ve had five single author history journal papers accepted so far) the confidence grows even further. So it’s an ongoing process.
So try the hard things folks. Don’t play it safe. And see where it takes you. Even if, like me, you are outside conventional academia, and ploughing your own path.