Thursday, 21 October 2010


Just a short post to explain the lack of posts recently (and next week).

Sadly, the weekend before last, a very dear friend of mine died of liver cancer. It wasn't unexpected, but it was sudden. He'd gone into a care home for the weekend to get used to it before moving in shortly, but got worse very quickly and passed a day later.

I haven't really felt like posting, partly because what I have to post about is generally on the depressing side, so have been somewhat avoiding this site. Also there is a slight amount of guilt that I wasn't one of those who was able to rush over there to see him one last time. He really was a special person.

We're burying him tomorrow, then my son and I are going away to his Mum's for a week, so normal service should be resumed after that.


Monday, 18 October 2010


Haven't been able to write much recently but here's a quick update on a couple of things.

Benefits - still waiting. We've had another letter saying it's being processed so I phoned up to find out what was happening. I spoke to three different people and the best they could tell me was that it was being processed and they should make a decision 'within a week'. Hmmm.

As for my mini-revolution and the promises to get back to me within a week - well I'm not at all shocked that she hasn't got back to me. I tried to contact her today but she's 'not in today'. Hmmm.

Something slightly positive to end. We got a bill through on Saturday that said because of the benefits my son was receiving (!) he had to pay towards care he wasn't receiving. That was actually sorted out in one phone call. I;m still in a state of shock over that.


Monday, 11 October 2010


Last week I went to a 'Friends and Family Information Day' arranged by the local Mental Health Trust (or whatever it's called this week). I didn't really know what to expect but thought it could well be worth going to. As I had borrowed a car to get there I was asked to give someone a lift, which was no problem, and at 8:30 I was wondering around a strange road looking for her house. Fortunately she found me and off we set.

The first thing that struck me, both on the way and when we got there, was just how much carers want and need to talk about things. From stranger to knowing whole family details took on average a minute or two and I guess we spend so much time isolated that when we are in a group there's a freedom and understanding you don't really get from friends no matter how they try.

It all started off quite well – they had a couple of opening pieces and then a group thing where we talked about what made us anxious and how we coped. These were then collated and it's fair to say most tables came up with almost exactly the same things as our worries are pretty universal. Unfortunately before anything could come out of this they moved on quickly to a speech by the Chair of the local trust. You know the sort of thing, we're wonderful and we try hard. He said he was new and there to learn but it was all basically self congratulatory clap trap.

Then there was supposed to be a piece entitled 'Opportunities and Challenges Facing the Directorate' given by the Director of Operations. He couldn't attend (never explained) so his deputy gave the speech and again we were being told how wonderful they are. When she started telling us about all the services available I was shocked to hear her say that all units had OT's as I've been told everytime I've said my son needs one that there aren't any at my local Unit. I pointed this out and was told I was wrong! I then pointed out that if she believed that I could be back in an hour with letters from that Unit saying they had no OT's on staff and couldn't provide my son with one. At that point someone else pointed out that they couldn't get an OT at their Unit either and other people started pointing out other things she'd said that simply weren't true. In some ways I felt a bit sorry for the lady being dropped in it like that at short notice but out of around 50 people in the room more than half were pointing out the lack of services she had said were available.

To be honest the whole day stank. The lady 'running' the day stopped the questions and wanted to move on as there was no time in the schedule for questions at all. Frankly the whole attitude of the day was 'We're here to tell you', not to listen. How on earth can you arrange something like that and not imagine that the carers are going to ask questions? Ridiculous.

Well everyone's dander was up and when we broke for lunch shortly after she and the Chair were pretty much surrounded. She promised to look into all our cases individually and get back to us. 'Would you prefer a letter or email?' she asked and I said that I wanted her to meet me face to face and everyone else agreed they wanted the same. Revolution!

The afternoon followed much the same style in so much as we were being talked at and a lot of people spent more time outside talking amongst themselves which was far more productive. The stand in lady (who has the rather meaningless title of 'Access and Recreational Pathways Manager') spent most of the afternoon in hiding and despite them saying all day that the session had to finish at 3:30 it didn't as the Chair decided he wanted to make another speech. It was slightly different to his other speech in so much as he claimed he had learnt a lot but looking at him it really seemed like nothing more that empty words, especially when he started talking about the challenges facing HIM form the upcoming 20% cuts to services. I asked (over him) what about the challenges facing us but despite this getting a round of applause he skirted over it for some more self congratulation.

These are the sort of people, and the sort of attitudes, that we have to deal with every single day and it's an absolute disgrace.


Wednesday, 6 October 2010

Benefits - an update

I talked the other week about how my son's benefits had been stopped for no reason and we were having to re-apply, so I thought it time to do an update.

This claim was supposed to be treated as urgent since my son is currently receiving no benefits at all. This claim was received by them in August, so there's been plenty of time to sort it out in my opinion.

In this time he has received two letters saying the claim is being processed. I've just got off the phone trying to find out exactly what is holding it up and they said they're still collating details. When I asked what exactly that meant I was told that was what was happening. Not much of an answer really, and after some pushing it appears they're waiting on a letter from his psychologist. I checked with them and, although the psychologist is off this week, her secretary told me that two copies had been sent and they had confirmed receipt of the second copy to her. Rather kindly she agreed to fax a copy directly to them if I got a number.

Back on hold, and when I got through to someone and explained the situation they told me they didn't accept fax copies. I pointed out that this was wrong as they had previously asked me to fax them some details and, after talking to someone else, she provided a fax number. I asked about the missing letter and, despite admitting they had confirmed receipt, she said it appeared to have been lost. I asked why, if they'd lost the letter that was holding things up, had they not tried to do something about it and was told that's not how they work. To be fair she was actually quite helpful and promised she'd look out for the fax personally but frankly I've little faith at all.

But here's hoping.


Tuesday, 5 October 2010

Feeling awkward

Last Thursday was a bit strange for me.

I play for the pool team at my local and during the season we have matches every Thursday evening. Last week we were playing at home and when their team arrived I was thrown.

In my post about good people the other day I mentioned the local service provider that my son has been going to and how brilliant they've been – when the other team arrived the main guy that had helped so brilliantly there was on their team.

Now he is a genuinely personable guy and we've had plenty of short friendly chats 'at work' but this was the first time in all these years that I'd bumped into anyone connected to my son's care in civvy street and it threw me. Now I should say that my friends that I play with all know my situation to some degree or another so there wouldn't have been any problem with saying this is so-and-so that helps Jr but I didn't. I don't really know why but it was a very strange feeling having two parts of my life that are normally separate collide like that. Another thing that had crossed my mind was that maybe he didn't talk too much about what he did to team mates and would it be awkward for him. We exchanged pleasantries and that but nothing more really and I think in a way I was worried about discussing anything much to do with Jr behind his back so to speak.

Even stranger was when I came to play my singles match. I couldn't concentrate properly as every time I started to line a shot he seemed to be sat in my eye-line. All very strange.

As it happened I won my singles and played in the last doubles with the score at 4-4. You can guess who was on the other pair, can't you. Funnily enough I found playing directly against him far easier – and at the back of my mind I could imagine the stick my son would give me if I had to tell him who had beaten me – and we won the game and the match. They left shortly after and as we all shook hands we kind of nodded to each other in the way you do when something has been unsaid.

After he'd gone I felt so damn silly.

The thing is though that as a carer there are different sides to your life and sometimes your sanity needs you to keep them separate. My weekly pool matches are 'my time' and somewhere I can forget about my real life. I'm not in any way a withdrawn person (for instance I'm normally the first one to go in when we play away) but this time I was rather. In a way I feel a bit ashamed about how I was as the guy has been so helpful but we're going in there today (if Jr is up to it) so I'll have a quick word with him.