Archive for the ‘phd’ Category

Today is Rare Disease Day, where people living with rare diseases are promoting their experiences through social media and other forms of networking. Though this is a bit of a break from my usual academic blogging, I hope that readers will understand why I’m writing this.

I live with a 1 in a million diagnosis, falling ill when I was just 22. The name is cerebral or central nervous system vasculitis, which when it springs from nowhere – as in my case – rather than as a result of another disease has an incidence of about 1 case per million people per year. Yes I’m special! Mmmm. This disease has impacted on my abilities to be an academic, forcing me to leave one full-time science PhD and later study part-time as a historian, to PhD level (completed – yay!). And it means I can’t work in academia in a paid capacity, due to my MS-like symptoms and living with what is a progressive disease. But I try to be as productive as I can. To read more about my medical story see here, and to read more about how I’ve coped as an academic see here.

But in this post I wanted to reflect more on some issues that living with a rare disease causes, rather than something more commonly found like cancer or arthritis. These range from diagnosis, through ongoing treatment and medical research, support from the social care system, and varied degrees of understanding from family, friends and colleagues.

Firstly if you have a rare disease, getting the correct diagnosis – which can be life-saving – can be very difficult. General practitioners tend to assume a more common disease form is taking place. Even at hospital level this idea can persist. I was initially misdiagnosed with ME, which at the time (and to be honest still is the case) had no viable treatment. But my symptoms changed over the following years, looking more and more like multiple sclerosis. And progressing. It was very hard to get the GPs to take me seriously. It was only after 12 hours of unstoppable vomiting for no reason – one of my early symptoms – and a GP having to give me a midnight injection in the derriere that he referred me to hospital, extremely concerned. Even at hospital the consultant assumed my ME diagnosis was right. I had to argue with them – hard given how ill I was – why I thought it was wrong, and why more tests were needed. I was right. I had a very aggressive life-threatening disease. One shocked consultant, me just relieved that a proper diagnosis had been made, and treatment could finally start.

But then there are problems too. if you have a very rare disease it’s unlikely to get much medical research, so new treatments may not be discovered, or may not be assessed to be cost worthy and suitable for your disease. With more common forms of vasculitis – the disease I have – there is more medical research happening, particularly into those forms of the disease that are ANCA-associated. For these forms of vasculitis new treatments are developed, and approved on the NHS. But for much rarer forms like my primary cerebral vasculitis the number of patient cases around the world – and in any country – is so small that it isn’t possible to do traditional medical research trials. So my form remains largely unresearched, and there aren’t the trials and resulting scientific evidence to lead to approval for treatment with new drugs discovered for other forms of vasculitis. For example Rituximab is an extremely expensive life-saving treatment approved for ANCA forms of vasculitis. There is not scientific evidence for Rituximab in the rarer non-ANCA forms like mine, and as a result it is rarely approved by health authorities in the UK.

With such a rare diagnosis support at general practitioner level and nurse level can be a problem. They’ve probably rarely encountered any vasculitis cases, which is rare enough, let alone my specific form. I have an excellent GP who has treated me since 2004 (I fell ill in 1994), but it can be difficult to get appointments with him. Because of him being away from the surgery on one day combined with the health centre appointment system stopping named appointments on certain days it would be vastly easier for me to get an appointment with any doctor, particularly a locum, but unless they’re “my” doctor they wouldn’t know what to do with my case. I’m on an incredible cocktail of drugs as well as having something rare and exotic wrong with me, and continuity of care is important. Even with nurses who administer my monthly (and for many years weekly) blood tests things have been a little difficult, with nurses not understanding why certain tests are needed, and not initially taking my word for it. But we got there in the end. Incredibly even at hospital level there are problems if you have to see another consultant unfamiliar with a rare disease and case. My consultant since 1996 recently retired, and I was very concerned that I would be put in a general clinic where I would have to tell my medical story every time, and even after that the medic on the day wouldn’t be confident what to do. Fortunately I was passed to another consultant who was my “backup” for years. He’s young, and hopefully not retiring or moving anytime soon!

It might be expected that a medical professional should know about a rare disease, though they rarely do. But it can be harder for non-medics. This causes problems for example for people applying for benefits through the benefits system. But even with family, friends and colleagues there can be misunderstandings. My disease is largely invisible. I only use a wheelchair rarely, though I have at least one stick (and sometimes two) permanently. People often only see me for the short periods I can go outside to an event, and don’t realise how much it takes out of me, and how much I need to rest before and after events. Also because I manage to do things people can underestimate how badly I am affected. I’m particularly minded of the notorious experience of dealing with a neurologist, who because I had completed a PhD couldn’t grasp that I could have cognitive problems. I completed that PhD towards the end in 1 hour chunks, spread throughout the week, up to 5 hours total time a week if I could manage it. After each hour I would be very wobbly, couldn’t control my limbs, just from the brain concentration I’d been doing, and it might be a couple of days before I could do anything PhD-y again. Yet he thought I was fine, on the basis of a short consultation, and because I had that PhD.

Fortunately both my history PhD supervisors were hugely supportive. They quickly grasped that they didn’t need to understand the medical side of things, they just had to know how I was affected, and let me take control of my studies. I’ve also had wonderful support from the department since completing the PhD, giving me an ongoing honorary research fellowship. And conference organisers are typically very helpful if I have to use my wheelchair, letting my husband accompany me at no registration cost, to assist me.

I don’t know the numbers, but there are probably a lot more people living with rare diseases out there than people think. I’d like to think that the situation will improve for them. But it’s going to take a bit of a sea-change in attitudes, both among the general public, and among the medical profession.

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Next Tuesday, 31st March 2015, it will be five years exactly since I passed my PhD viva. It’s quite a big anniversary, worth celebrating, and I thought I’d look back on how things have gone since then.

It was my second go at a PhD, this time studying history, part-time. In the 1990s I was a full-time science PhD student, but had to leave that after a progressive neurological illness started at age 22, and my funding council wouldn’t support a switch to part-time study. I’ve blogged before about how much of a challenge it was to try for a PhD again after walking away from the first one. There were advantages though: the first go gave me skills and experiences which helped make me a more efficient PhD student the second time around. But I still never really thought I’d complete it, if I thought about it at all. But I crossed fingers and did my best!

My viva was arranged for the end of March, just five weeks or so after my thesis had been submitted. Unfortunately I developed shingles in the run-up to the viva: an agonising recurrence of the chickenpox virus, a consequence of the high-dose chemotherapy and steroid drugs suppressing my immune system so much. It certainly made preparing for the viva a challenge. But maybe it helped me not get too anxious about things.

On the Wednesday of my viva Scotland was blanketed with heavy snow. Luckily both my examiners got to Dundee: the external coming from Edinburgh, the internal digging out his car in south Fife! I didn’t sleep at all the night before, but I got about four hours sleep that morning, before my husband took me in to the university, and helped me get to the venue – I had to use my manual wheelchair that day, and a suitably accessible venue had been arranged. The examiners had also agreed to restrict my viva to an hour because of my disease which means that I get very brain tired very quickly if things go much over that.

I was told that I’d passed with minor corrections as soon as the viva started, which removed the tension a lot. I remember the next hour as a relaxed friendly chat about my research. Both examiners had lots of questions, and even the third academic present, a Dundee lecturer who was acting as chair or convener of the viva, had questions too, which was nice. It was really enjoyable to be able to chat to people who had engaged with my research so closely. I also took the chance to ask their advice about good publishing strategies. After an hour the chair wheeled me out of the room, to rejoin my waiting husband, and we went off to celebrate.

I’m unable to work in academia because of my severely disabling progressing neurological disease, so have ploughed a different path as an academic. It may be worth reflecting here briefly on what it means if going for a PhD, whether or not pursuing a conventional academic path. Firstly and most straightforwardly passing a PhD is validation of your PhD research and thesis, and the many years spent working on it. It is also a mark of your acceptance into the academic community as a fully fledged academic, capable of formulating and completing large research projects. Extremely important, I think, is the huge confidence boost passing a PhD can give you. There’s very much a feeling of “I can do that!” And for me personally it also saw the achievement of a long-term goal, and helping to put to bed the hurt of having to leave a science PhD after my illness struck at just 22.

I asked for an honorary research fellowship from my department shortly after finishing the PhD, after realising that because of university libraries increasingly switching to staff/student-only electronic subscriptions to academic journals rather than print, which aren’t available to other library members including graduate members like me, I would struggle to access the journals I needed to keep up with current research and thinking. This would be a problem as I aimed to publish my own research in academic journals. Fortunately the fellowship was granted, and has been renewed each year since. This helps me enormously, but Dundee University’s history division also gets some credit whenever I have another academic publication with my affiliation noted. I also take an active part in Dundee’s history research seminars, when I’m strong enough to come in.

Publishing academic journal papers has been an important activity for me since my viva. Soon after the viva I met with my PhD supervisor Charles McKean. He was keen for me to aim at very ambitious journals, which was scary, and hasn’t been completely successful, though I think it was worth trying for. But I’ve had a fair number of journal papers accepted post viva, some of which have gone into print since, others are shortly to go into print. I’m also developing four more papers at the moment, and am increasingly moving into new research, some following on from my PhD topic directly, others more marginally connected. As a historian it’s normal to be sole author of your academic papers. This is very different from science, where papers typically have multiple authors, often a very long list of names. So I have all the responsibility of doing my own research, and the writing, submitting to editors, dealing with peer review (ouch!) and any rejection or revise and resubmit offer, and proofreading prior to final publication. One of my post viva publications, in Scottish Historical Review, had to be proofread in Ninewells hospital during a high dose chemotherapy infusion. The editor had hoped to get the proofs to me days sooner, but as it turned out it was a case of my dealing with them on the day in hospital, single handed, literally, with the other hand hooked up to the toxic chemotherapy infusion, or not be able to do the proofs in time, given how sick and tired I would be post chemo. Not a great memory! But I did it, and I’m particularly proud of that paper, that comes from my PhD research. I really enjoy the academic publishing process, and it seems to be something that I’m good at.

I’ve also been giving conference papers since passing my PhD. On the downside I usually have to pay the costs of attending and travelling myself. And since I usually need to use my wheelchair there, and need help, my husband has to come too. But we usually pick events that give us a chance to visit somewhere we want to go to for a little break. I have to rest a lot after travelling, and can usually only attend part of any multi day conferences, but my husband has a good time exploring the relevant cities while I sleep, with camera in hand. Attending conferences isn’t easy for me, but it keeps me part of the academic community, and I enjoy the challenge of giving papers. I’ve attended four conferences in the last five years, and spoke at three of those. I was invited to give a talk at a conference for archivists, fortunately held here in Dundee. I was speaking as a disabled user of archives, sharing my experiences with them re access, getting support from archivists etc. Then I presented a paper about my taught MPhil dissertation research into Melrose regality court. This was presented at the Economic & Social History Society of Scotland annual conference in Inverness. Inverness is lovely and Leakey’s Bookshop is a must see! I attended, but didn’t speak at, the SHARP (Society for the History of Authorship, Reading and Publishing) 2012 conference in Dublin. It was fantastic to see the city because my great granny was born there. And then in 2014 I went to the annual SHARP conference again, this time in Antwerp – which I have long wanted to go to (oh but the cobbles!) – and gave a paper on TV series Doctor Who and its fanzines. Talk about moving out of my comfort zone as an 18th / early 19th century book/reading historian! But it was fun, and just the sort of thing my PhD gave me the confidence to tackle, and the talk attracted a huge audience – nearly 70 (most panels there were getting 20 or so people), with some having to stand or sit on the floor – who seemed to enjoy it. I will also be giving another talk in a couple of months at a book history conference in St Andrews.

I don’t know how long I can keep doing these journal papers and conference talks. My disease is progressive, even though it’s playing a bit more nicely at the moment, after the summer 2012 high dose chemotherapy infusions in hospital. I have significant dementia-like problems with memory and concentration. I also have to sleep for vast amounts of time, up to 18 hours every day in worst patches. Ironically given that my PhD researched historic reading habits I have enormous difficulty reading now due to the brain damage – thank goodness for my Kindle! And I have to do academic work in scattered short bursts, often a few minutes and no more than an hour at a time. But I do plan to keep going for as long as I can. I may not be employed in a paid academic post, but as I’ve said I’m ploughing my own path, and enjoying it.

Meanwhile next Tuesday is a time for celebrating again. I think I’ll get me a half bottle of Moët et Chandon champagne – my favourite – and some cake. Yum!

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Another day, another post looking back on my PhD days. I’ve been getting a little exasperated in the last few days, reading comments by full-time PhD students who are bemoaning their funding running out at the end of the third year, for both financial reasons and lack of time to complete. But this is the situation that many part-timers are in all the way through their degrees, especially humanities students, where funding is much scarcer than for science students.

Unlike full-time students part-time PhD students don’t have the luxury of being able to work full-time at a PhD, and instead have to squeeze it in at weekends and evenings as they can, around any job and for example family commitments. It’s difficult, it requires a lot of guts and determination. Some fall by the wayside, but many do complete. And I don’t think full-timers really appreciate just what part-timers go through.

I’ve been both a full-time and part-time PhD student. Part-time was much much harder. It required guts, sticking power, and sheer determination to complete. But the sense of self-reward at the end was huge.

I just wish some full-timers would stop moaning about their funding running out, and think about other options. Get a job if you can, and switch to part-time study for the rest – it can be done!

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I’ve been a PhD student twice. Initially I was a full-time computer science PhD student. I had to leave that, after falling ill with what would turn out to be an aggressive progressive neurological disease. Years later, after retraining as a historian (picking up both bachelors and masters degrees), I had a second go, part-time this time. I’ve just been reflecting on lessons I learned from the first time, in a post on a postgraduate forum where I’m a member. And I thought it might be worth reposting them here.

The second time around I didn’t do the standard spend a whole year (or equivalent if studying part-time) doing your literature survey, which I think is a complete waste of time, though I appreciate it can be a way of easing new students into the process gradually. When I fell ill during my first PhD, during that first full-time year, having followed the traditional timetable meant that I made very little progress before it was too late. I wasn’t going to make that mistake again. Second time around I did my literature survey and chapter in 3 months, even though part-time, and then got on with the research phase of my PhD.

A big advantage of being a PhD student the second time was that I knew the PhD degree processes much better. Even though I’d had to leave my science PhD before I got too far into things myself I still knew the general processes involved, I’d watched fellow students in my department go through them and had learned from their experiences. This meant that in go #2 I was a much more efficient PhD student than the first time, and very much took control of my PhD. That proved to be particularly important when my original history PhD supervisor moved 500 miles away to Oxford, and initially supervised me long-distance, but then I switched to a new supervisor, and had to negotiate how best to deal with him.

On the downside, writing did not go smoothly time #2. In my case I’d switched to a radically different subject area, albeit picking up those other two degrees first. But I struggled to find my writing voice in my history PhD, and at one point had to restart the writing completely. With hindsight it’s just as well I saved time earlier in the process, because I needed it later! But I did complete within the six years allowed me as a part-time student, even though for much of that time I was managing on no more than 5 hours total a week as my illness worsened. I didn’t need to ask for extensions, and passed my viva easily.

I don’t think I would have completed the second PhD so smoothly if it hadn’t been for the hard lessons I learned the first time.

To read more about my experiences as a disabled PhD student see here.

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I read a blog post today about self-funded PhDs, which was really interesting. It was written by someone who is working part-time to support their PhD, which I think, if I’ve read it correctly, is studied full-time. That takes a lot of guts. Much more common, certainly in the humanities, is self-funding for part-time PhD students.

I was a PhD student twice. Initially I was a full-time science PhD student when I fell ill in 1994, with what would turn out later – once eventually diagnosed – to be a very aggressive progressive neurological disease. I had to drop out, and although I considered self-funding it was not financially an option. There were other reasons that would have stopped me completing that PhD anyway.

Seven years later I started a self-funded humanities PhD, having picked up, in the meantime, a bachelors and masters degrees in history, both studied part-time. I expected to self-fund throughout. My husband was working, so I did not need to support myself financially. And I was studying the second PhD part-time, which made a big difference to the fees due, and the workload.

Much to my surprise I won funding from the second year onwards from AHRC who were willing – unlike my previous funding council EPSRC – to support part-time study. This was a particular surprise because I’d had to declare my past research council funding, but that was not counted against me. And, most significantly of all, when I applied, only 1 in 5 applicants to AHRC for PhD funding were successful. I was very very lucky.

There’s a perception among some in the sciences that self-funded PhD students are failures. It’s certainly true that – at least for full-timers – PhD funding is much easier to get in the sciences. There’s much more science money out there, people with lower quality earlier degrees can get funding for their PhDs. In humanities there is virtually no funding available for PhD students. Even what there is is only available for the very very best, and out of those only the very luckiest. This has led to a different economic situation among humanities PhD students, where it’s particularly common for people to self-fund part-time study alongside a full-time job. Or, more typically, a slightly less than full-time job, so they have the time available to put in the study required. Indeed in some humanities departments there are more part-time self-funded students like this than full-time funded ones.

What I’m less sure about is what the prospects for employment in academia are for people who self-funded throughout their PhDs. I could easily see some academics not being so impressed that the student, unsurprisingly, could not get some of the very limited funding. On the other side though I suspect that many academics would consider the bigger picture, and would assess for example the student’s publication record and teaching experience. For the latter part-timers can be at a disadvantage, with some departments more likely to offer teaching opportunities to full-time funded students, not least because they can be more visible on-campus. But if a part-time student is determined, and makes the right enquiries, they can get the good opportunities too.

Of course even funding can vary in how full it is. When I won my funding from AHRC part-time award holders just had their fees paid, and no allowance for living expenses. We also didn’t receive the same support for attending conferences and other things as full-timers. Over the following years the situation improved. I know, for example, that my original PhD supervisor, who later moved from Dundee to Oxford, was pushing for part-time PhD-ers to get the same support as full-timers from AHRC. And we eventually got it, including a living expenses allowance, which is only fair, given how often even part-time students have to reduce their working hours, and thus earning potential, to fit in a PhD.

What I’m sure about is that if I hadn’t won funding I would have carried on with my humanities PhD, part-time, self-funding, and I’m confident that I would have finished, and would have been doing exactly what I’m doing now, as an independent academic researcher, publishing my research in academic journals and doing new fun research. And I have the utmost respect for others doing their PhDs by self-funding, whether they are full-time students, or part-time ones. It can be difficult, but also rewarding.

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