A small victory

After the week from hell, the last week has been a little calmer and we've had one small victory. After being told we wouldn't get a direct payment to enable us to put the ramps in the new house and we'd have to go through the full 18-24month grant process, we told the OT from Social Services we were going to take our story to the papers, due to the complete ridiculousness of the situation. Seems it doesn't matter how much you try to help yourself and you only need a small helping hand there are so many barriers it's impossible. We've found out since there are more departments and assessments put in place to stop people getting what they're entitled, the cost of preventing us getting the ramps and wetrooms is probably more than the cost of getting them done!! Anyway, the threat of negative publicity had some affect because he rang back the next Monday and said he had secured temporary ramps for us and would deliver them that week - our small victory. That's where it ends though, nothing for the wetroom.

We had a meeting with our benefits advisor and now all our own money has gone Mark is entitled to another £35 per week, but that change in benefits opens the door for him to have Council Tax and some Mortgage interest paid so very helpful overall. Another small positive.

The Careers, still a massive pain in our life. We've sacked them from the night time calls and it's back to me again. We've had a meeting with our Social Worker to get the process underway to change to direct payments. That process allows us to have Marks care money paid into an account set up by him and employ our own care. The waiting list for yet another assessment for that is 3 months, then some months before it's actually set up. We think this yet another massively time consuming and frustrating process will be better in the long run to help Mark back to a more independent life. We're also going to try and change our Care company because we can't stand another possible 6 months of the rubbish care he's receiving. The Social Worker is so disgusted with their standard of business she's going to try and get them off the Social Services register. It's hard enough when your life has been dumped on its head but having to put up with all just makes each day more stressful.

Mark had a morning out to his possible new place of work but apart from that he's continues to decline. He's spending the majority of each day in bed now due to increasing pain and as you can imagine his mental state is beginning to also deteriorate as a consequence. We're still waiting for an apptn with the Surgeon in Leeds and had decided to take that into our own hands as well and speak to his secretary and find out how long that's likely to take. If it's weeks we're going to try and see him privately. We have the money in Marks Trust which has been earmarked for all sorts of things for him when we move, but his quality of life is so bad now it's pointless having it in the bank but being almost completely bed bound.

The house purchase processes are moving on but still don't have any idea of a moving date. Being confined to home is beginning to frustrate both of us, we need to move on.