Getting involved!

The National Hep C Network website is up and running, and feedback so far has been very positive.

It's a tricky balance between having plenty of information available and not duplicating what everyone else has on their website - plus making sure that people are directed towards good quality and reliable sources of information. I hope we've got the balance about right and that in turn, those agencies to whom we have made referrals will put links to our sites on their own pages.

Where I think we benefit, as an organisation, is that we have links across the country. Having mapped all our contacts, we have general coverage across the UK - with the exception of Northern Ireland, and this has to be one of our great strengths.

The tendency to focus everything on London has once again been highlighted this week - this time through the response to gun crime. My area, Nottingham, has been considered the gun-crime capital of theUK for some time now, and there has been widespread criticism of the police from Government level - however, 3 shootings in London and extra police are out on the streets, ministers and politicians are considering it a serious issue and there are talks about legal changes. About time. Those of us who live outside the capital have felt like second-class citizens for some time in most aspects of Government - it's sickening!

Anyway, back to Hep C. Anita Roddick has this week informed the press that she has Hep C. Congratulations to her for her courage. Let's hope other high profile people follow her initiative. Not only that, she has been very outspoken in her criticism of national policy - her comments echo those of so many of us who have worked in the awareness field, and I feel that now is the time to stop appeasing and trying to effect change through diplomacy, but to accept that confrontation and harsh criticism may be more effective. To put it another way, the most effective way to deal with politicians is to hit where it hurts - by losing them votes - or by encouraging them to act to keep votes. An interesting foot note to this is that I was invited, in my capacity as Chair of the National Hep C Network, to represent patients in discussions about developing awareness. So far, no reference whatsoever has been made to this role, and my views have not been sought at all - though my opinions are well known. It makes me feel like a very second class patient!

And throughout this week, I have been extremely busy - work, of course, has been a major time consumer - meetings, tutorials, marking, preparation etc etc. And sandwiched amongst all this, phone calls to patients, friends, consultants, nurses, MPs, pharmaceutical companies etc - not to mention the e-mailing on a daily basis.

Maybe most important have been two meetings - firstly with Addaction UK, where we are setting up training for a group of professionals, which will be disseminated around the UK during the course of the year. The second meeting was at the University, with the health faculty. It is the second meeting of a group designed to bring together services and service users and the training establishments, with the aim of bringing real life, first hand patient experience into health professional training. This has enormous potential for the future, and seems to be just at the point of taking off.

Alongside all this have been the post-treatment side effects which have become an ongoing part of life. I simply fall asleep! I tend to do a couple of hours work, or keep going as long as necessary, and then simply cannot stay awake. I wake up an hour or two later unrefreshed, irritable, light-headed and utterly shattered. My knees are painful, I keep getting itchy spots, and right now have a rather sore swelling on my left eyelid! Still - never mind - better than carrying around the virus. Vicki blames all this on me over-doing things. Being female, she's almost certainly right. Being male, of course, I don't listen!

Take care all