Interesting blog and good link to a Hep C PSA

[Guest guest]

All the students have now left for their Christmas break, which thankfully means a rest from lecturing and a chance to get on with some of the more mundane, administrative aspects of the job.This week, the impact of post-treatment side effects has been very evident. Every night, I have simply fallen asleep on the sofa. It's not really a case of closing my eyes and dropping off, more a total inability to stay awake. Later, when we go up to bed, my legs feel like lead. For those few hours at the end of the day, it's like a return to treatment -though one of the not particularly bad days.As well as this, I get joint pains, abdominal pains and my digestive system is not as efficient as I would like it to be. My eyesight is awful. Looking at the computer monitor at work gives me headaches after about 10 minutes, and while my flat screen at home is better, too long and I begin to feel very light headed. Oh - and my left eye has swollen up and become painful.I also found myself feeling very low on a couple of occasions - no real reason for that - I just did, and then felt better later.All this has contributed to my decision not to return to work full-time just yet. Fact is, I still feel the need to recuperate, and it's hardly wise to work myself into the ground until I am back to full strength. I suspect this isn't helped by the vast majority of my working hours (according to my diary) involving more 'intense' work - school visits, lectures etc, when I would really prefer my duties to be altered to reflect some of my health needs.Whatever, sitting here now, looking back on the last term, I certainly have no sense of professional achievement - just a dull tiredness and frustration.Apart from all that, it's been a slightly busy week. Mainly for Vicki! She has organised the next meeting of the National Hep C Network Trustees for January, and is busy working on the conference in April. With luck, we will have all the details for that ready fairly soon, and can start inviting people. NHCN now has a bank account - just waiting on the paperwork - and the charity application will soon be in.After news reports yesterday(BBC News), it seems that plenty of awareness raising is needed. The number of Hep C diagnoses has actually fallen since last year. Why? Could there be a link with the crisis in health service funding? The answer is obviously 'yes'. I was told recently, from an extremely reliable source (a senior hepatologist), that the local PCT had requested that testing be avoided where possible, as the need to treat would be expensive. It's totally unacceptable - but herein lies the problem. As a long term illness, the buck can be passed, and the tab can be picked up, by future Governments. If, as is estimated, about 5,000 people reach end stage liver dsease by 2015, the cost at that point and beyond will become astronomical, with the need for transplants, cancer treatments etc. But why should this Government care? The next one can foot the bill.One factor which may help is that greater funding for the NHS awareness campaign is being considered. Maybe we will see billboard advertising and TV campaigns as other developed nations have had. For example, this one from the US, using the image of an oncoming train (click on link).However, what has been the real strength of the campaign to date? In my view, it has been the 'coming out' of many patients, including myself, and the mobilisation of those willing to be active and raise awareness of Hep C - many names spring to mind - all the hep c bloggers, Ron's forum, 's website, support group leaders, 's web page to name a few. That doesn't mention all the agencies working so hard to promote awareness, notably, the Hep C Trust.I can't help wondering if money might be better invested in these groups - the Trust working and lobbying at National level, and the National Hep C Network disseminating support and awareness at a local level.I suppose patient groups constitute something of a 'loose cannon', in that the information we make available is not necessarily information that the Department of Health would like to be shared. Nor can activities be controlled - provided they are lawful, any strategy is permissible.Plus, of course, some of the disinformation being perpetuated by the NHS campaign is actively alienating some patients, so that many who may have taken part are reluctant to (see last blog entry re sexual transmission, for example).Sadly, the Department of Health brief has missed the mark. Diagnosis is important, but prevention must become relevant at some point. Many people with Hep C actually contract the virus in their late teens/early 20s - so to tell people to 'Face your Past' in a rather accusatory manner is likely to seem irrelevant to them. Prevention should target students and young people - not those for whom it is too late. A simple way round this is to use wider screening as is available for many conditions, and refocus the campaign - at £13 for an antibody test, this is hardly expensive when compared to the potential cost of later liver transplants.Anyway - I'll just put my soapbox away under the sofa...More personally, again, an interesting change in me became apparent yesterday. Vicki cut her finger - not too badly, but a bit messy. For the last two years, I have shied away from blood - not out of any distaste or queasiness, but because of the fear that I might transmit my virus. This time, I was able to react quickly, help her out, apply first aid etc. Quite a relief to deal with these things confidently. Also shows how easy accidental transmission amongst the unwary (or undiagnosed) might be.Also, Vicki is getting increasingly involved in her work supporting those involved with domestic violence - more time on the on line support forum, training last week and starting work properly in early January. Great news!And now the final straight before Christmas. Shopping done, working out what we have forgotten, and waiting for our on line order to arrive. Oh - and visiting friends and family who we won't see on the big day.So - in theory a relaxing week. The reality .... well, we'll see!Take care all.

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