Still Waiting

With increasing frequency I have been asked the question "When are you having the surgery?"  Originally I would reply with an optimistic "in a month or two hopefully," but now I am considering responding with "When Hell freezes over and the Gods tear the sky asunder."

My patience is starting to wear thin.  Looking back when I started this blog, it was over two years ago.  Two.  Fracking.  Years.  And I have only recently made progress so far because it was I who did the incessant phone calling, chasing up letters, appointments, and waiting lists.  It was I who decided to make the enquiry about changing hospitals to speed up the process - no one mentioned to me it might be quicker until I joined a rehab unit and one of the nurses casually mentioned it.  I only changed as a last resort - a big decision since I had been with my original hospital since I was 17, and was like stepping into the unknown.

It is the constant phoning that is testing my patience.  I have said before, both places probably think I am a crazy stalker patient, but if I wasn't so persistent, I would have never found out that I was never put on the waiting list for a Baclofen trial, that the letter mysteriously went walkies in the post.  Don't get me wrong, the NHS is a brilliant thing to have, considering the fortunes I would have to spend in a system like the US, but good grief do they make you work for it.

My family and now fiancé are frustrated too - my mum and fiancé have been to most of my consultations, trials, appointments, etc.  He has put up with moving around finding The Perfect Place suitable for when the pump finally happens, supporting me when I went part-time at Uni, thinking that This Would Be The Year.  Thinking about it, everything has been in preparation for it, including the acceptance of the changes it will bring.  But stretching out the waiting process is horrible, bearing in mind my phenol injections have worn off, I am on no kind of medication, and my increasing tetchiness must make me a pain to live with.

So, this week, again I will be ringing up just to get a hint of a date, as I am just not going to assume "things will happen."

Rant over, but it felt GOOD.  Now when I go home I will probably vent further anger shooting some Banshees in Mass Effect 3.

Ouch! Messageboard Update

The BBC has decided to grace us with an update about the closure of the Ouch! board, and try and allay our fears:

More absolute tosh

...We did consider the impact on users before making the final decision, though these types of editorial decisions are not subject to the public sector equality duty.

Safety and privacy have proven to be big talking topics over the last couple of years in social media circles and many empowering improvements have been made as a result. If you've been scared away in the past, it might be worth taking a new look.

I highly doubt they did "consider" how it would affect us, as no one was asked as far as I'm aware! Also, the way the blog talks down to us about social networking sites not being the big bad wolf users fear is, to be blunt, a load of crap.

What they obviously have not taken into account is mental health issues - what the BBC see as not a big issue - just find a new place! - could be for some people, very destabilising. To put it figuratively, imagine the Ouch! board is a big security blanket, one that makes us feel secure and safe in the knowledge that we can post bluntly and openly about what is up with us. Using Facebook for this exposes your personal identity to anybody else using the group, or anyone who cares to find out. Additionally, you can not make accounts under a false name - at risk of being banned.

The BBC are essentially taking that security blanket, ripping it to shreds, and throwing us a manky, threadbare rag.

BBC closing Ouch! Messageboard

So, the BBC has come to the decision to close the Ouch! messageboard. For those of you who know what this is, you are probably really pissed off right now, and for those who don't know - it is the only section of the BBC where peopleof all disabilities can come together and talk about life, the universe and everything. For others it is the only communication they get with the outside world, and a place where people can talk anonymously without being judged.

Yet the BBC feel that the concept of such a messageboard is antiquated and not worth their resources:

What a load of pish

The web and BBC Online have changed a lot over the last decade and we believe it's now time to close the Ouch! messageboard. You regularly tell us that our current service doesn't always deliver the kind of interaction and relationships you want and, indeed, the BBC realises there are now many more effective ways to involve its audience. Social networking is immensely enabling and has outclassed what we can provide in terms of specialisms, privacy and personal connections for this community. Plus it brings great control: you are able to block unwanted users and manage your personal interactions more immediately and effectively.

Ian Hunter, Managing editor of BBC Online, recently wrote a blog entry about the BBC's approach to messageboards and social media explaining how we intend to move forward. Ouch! will continue to be a place where you can feedback on disability matters alongside the content on our blog, via Facebook and Twitter.

Hmmm, funny, I don't remember anyone being consulted about this. Messageboards and social networking sites are completely different things with totally different ways of communicating, lacking the anonymity that people get from a board. Plus many Ouch! users find Facebook an intimidating place and are uncomfortable with the idea of posting on such a site.

But, fear not, fellow Ouch! user, we can we have a month to adjust to this change and "pop along" to this thing called Facebook and acquaint ourselves with it, as told in possibly the most patronising part of the blog post:

The messageboard will close on Wednesday 6 July. That gives us almost a month to help you find each other again. In the final week, we will see how this process has gone and help out if need be.

We have our own Ouch! Facebook page and we encourage you to pop along there now and 'like' us; a quick and easy way of staying in touch with your online friends. When the board has closed, you can continue to comment on our blog with your messageboard login.

I don't know if this is just me, but it almost feels like we are children they are chiding along gently, like a parent persuading their kid "don't worry about moving, I'm sure you'll stay in touch!"

Pfft. This move will only break up a well established community and alienate long time users.

So, if you care about the Ouch! board, or simply want to help us stop the closure of it, please go to the petition here and sign your support.

Thank you.