But for how long can I?
Virtually every day is a fight for something or other. Whether it's arguing with the disgustingly unhelpful DWP, or trying (to no avail) to get funding for the music group I mentioned previously, to fighting for the kind of treatment my son needs, it's all a fight.
I wonder how long will I have to keep fighting, because right now I really don't think I've got anything left. It's just so hard always being up against it and having serious worries about money doesn't help. I've got to keep fighting for my son as there is no one else to but what about me? I'm supposed to do all this, with no real help, no money, and no real future.
Before I gave up work I was lucky enough to be earning good money and could afford what we wanted and needed, now I have to rely on the kindness of friends for any kind of joy in my life. That is what it is like being a carer in this day and age. We're expected to be doing all the work (and don't get me wrong - he's my son and I want to be there for him) and just get ignored by 'the system'.
Keep buggering on. Wonderful.
xxx
Wednesday, 23 February 2011
Saturday, 15 January 2011
Matched Funding
Yes, those two words rear their ugly head. For those who don't know exactly what it means basically it's a situation where the local authorities will provide money for an activity so long as that amount is matched by other parties (such as charities etc).
I went to a meeting at the local mental health unit on Friday about a music group. There is a small local studio and they run courses on music production and such like. Now we have knowledge of this studio as Jr attended a short course there last year and I can say, hand on heart, that all the people involved at the studio could not possibly have done a better job of making nervous people comfortable and happy. Frankly the care and love these 'amateurs' showed puts many people who actually work in mental health to shame but that's another issue.
So the situation is this – there is funding for a 6-8 week course if matching funding for another similar period can be arranged. This involves the people wanting to do the course applying for various funding and waiting to see what happens, all for a few extra weeks. Whilst there will no doubt be learning through this process the people involved are naturally wary of what they will have to do and rather frightened of getting it wrong. All this stress for 8 weeks extra.
We're not talking about a lot of money here (£100-£150 pw all in) and I think it would be fantastic if this group could be turned into a permanent thing as it will be of major help to all involved, so here is my idea...
Do you know anyone involved with music or anything related who might like to fund the group? I know times are very hard and there's not really much on offer in return regarding advertising or anything as the conditions of the people involved mean it would be rather private. I'm not to proud to beg for these guys and that is basically what this post is. Surely someone, somewhere would be willing and able to help these youngsters for such a comparatively paltry sum that could make such a difference. This is completely legitimate, and the group is being set up with the assistance of the local mental health unit and will be arranged in a legal and proper way. I'm no accountant but surely someone could do it in a 'tax efficient' way, at least you'd know that every penny was being used for a good cause. Or if anyone has any ideas of groups that might be approachable regarding this please make a comment to let me know.
Any help at all with this would be incredibly appreciated and make a genuine difference to some of the most vulnerable members of our society.
xxx
I went to a meeting at the local mental health unit on Friday about a music group. There is a small local studio and they run courses on music production and such like. Now we have knowledge of this studio as Jr attended a short course there last year and I can say, hand on heart, that all the people involved at the studio could not possibly have done a better job of making nervous people comfortable and happy. Frankly the care and love these 'amateurs' showed puts many people who actually work in mental health to shame but that's another issue.
So the situation is this – there is funding for a 6-8 week course if matching funding for another similar period can be arranged. This involves the people wanting to do the course applying for various funding and waiting to see what happens, all for a few extra weeks. Whilst there will no doubt be learning through this process the people involved are naturally wary of what they will have to do and rather frightened of getting it wrong. All this stress for 8 weeks extra.
We're not talking about a lot of money here (£100-£150 pw all in) and I think it would be fantastic if this group could be turned into a permanent thing as it will be of major help to all involved, so here is my idea...
Do you know anyone involved with music or anything related who might like to fund the group? I know times are very hard and there's not really much on offer in return regarding advertising or anything as the conditions of the people involved mean it would be rather private. I'm not to proud to beg for these guys and that is basically what this post is. Surely someone, somewhere would be willing and able to help these youngsters for such a comparatively paltry sum that could make such a difference. This is completely legitimate, and the group is being set up with the assistance of the local mental health unit and will be arranged in a legal and proper way. I'm no accountant but surely someone could do it in a 'tax efficient' way, at least you'd know that every penny was being used for a good cause. Or if anyone has any ideas of groups that might be approachable regarding this please make a comment to let me know.
Any help at all with this would be incredibly appreciated and make a genuine difference to some of the most vulnerable members of our society.
xxx
Thursday, 6 January 2011
Out With The New, In With The Old
Well we had our first meeting with the 'new' CPN yesterday. It was good to see someone we knew, and had confidence in and Jr was comfortable seeing someone he knew – so comfortable that he was sat waiting for him to arrive!
Sorry to any fans of misery out there but it all went rather well. We had a long chat about the sort of things that my son needs (and wants) to be doing and he left with a long list of things to get details on. We never expected him to come round here with a bunch of answers but we now have a base set of ideas that he's going to research and come back to us next week with solid ideas. Some of the ideas we had simply aren't possible but on the other hand he came up with some ideas that we'd never thought of and when he left both my son and I were very confident that we were going to be moving forward with this guy.
Despite the positivity I can't help feeling that my son has been held back because of this guy being replaced by an incompetent buffoon (and that's me being polite!) last spring just when he'd developed a relationship with my son but we've got to look forward now and get what we can.
One point I did make to him was that I would not ever accept a lack of funding as an excuse for my son missing out on something he needs. I was clear to him that I wasn't saying this in an adversarial way at all but that if Jr missed out on anything at all due to funding I would not only be straight round to my MP but I'd also have no problem kicking up a fuss in the local press and even going as far as instructing my solicitor to take action (fortunately for me he's an old friend of my late father so I know he'd help pro bono). I simply will not accept that funding can stop my son getting the help he needs – not on my watch!
So all in all a very positive meeting.
As an aside (and this may be of interest to some) Jr was talking about joining the library recently but actually going in is still a bit much for him. As I was collecting a book I'd ordered yesterday I asked if there was any way round that. I didn't expect anything but it turns out the WRVS run a scheme through libraries where they'll come round to 'housebound' people, sign them up and come round roughly monthly with whatever books they want. It appears that many libraries offer this service so maybe someone reading this may want to look into it if appropriate.
xxx
Sorry to any fans of misery out there but it all went rather well. We had a long chat about the sort of things that my son needs (and wants) to be doing and he left with a long list of things to get details on. We never expected him to come round here with a bunch of answers but we now have a base set of ideas that he's going to research and come back to us next week with solid ideas. Some of the ideas we had simply aren't possible but on the other hand he came up with some ideas that we'd never thought of and when he left both my son and I were very confident that we were going to be moving forward with this guy.
Despite the positivity I can't help feeling that my son has been held back because of this guy being replaced by an incompetent buffoon (and that's me being polite!) last spring just when he'd developed a relationship with my son but we've got to look forward now and get what we can.
One point I did make to him was that I would not ever accept a lack of funding as an excuse for my son missing out on something he needs. I was clear to him that I wasn't saying this in an adversarial way at all but that if Jr missed out on anything at all due to funding I would not only be straight round to my MP but I'd also have no problem kicking up a fuss in the local press and even going as far as instructing my solicitor to take action (fortunately for me he's an old friend of my late father so I know he'd help pro bono). I simply will not accept that funding can stop my son getting the help he needs – not on my watch!
So all in all a very positive meeting.
As an aside (and this may be of interest to some) Jr was talking about joining the library recently but actually going in is still a bit much for him. As I was collecting a book I'd ordered yesterday I asked if there was any way round that. I didn't expect anything but it turns out the WRVS run a scheme through libraries where they'll come round to 'housebound' people, sign them up and come round roughly monthly with whatever books they want. It appears that many libraries offer this service so maybe someone reading this may want to look into it if appropriate.
xxx
Tuesday, 4 January 2011
Meeting
Well I told you I was going to have the meeting with the head of 'Pathways Development' and it finally happened just before Christmas.
Turned out not to be just her, the (current) head of the local until was there as well but they do like to pair up on you so I wasn't that surprised. As an aside isn't it sad that I, and so many other 'service users', see the system that should be there helping us as adversarial?
We went into the meeting room and as soon as we sat down I got the letter they'd sent me out and passed it over to them, pausing, then asking them if they stood by the everything it said. They seemed a bit confused by not leading the meeting and by my question but glanced at the letter and said they did. That was exactly what I wanted to hear and it was game over for them.
I pointed out where they said he attended 'a' and 'b' on a weekly basis. I told them that for various reasons he hadn't been to either for nearly 2 months when the letter was written. How did they not know that? Then I pointed out how the letter said he was receiving regular appointments with a psychiatrist. I then said that whilst the one appointment he'd had with the psychiatrist in the whole year could pedantically be called regular it really didn't fit any accepted or acceptable meaning. I then sat back and said 'Now do you understand why I'm so pissed off?' and all she could say was yes.
We got into the nuts and bolts and it turns out the CPN that we had to ask to leave because she was so incapable of listening no longer works there. Neither does the Assistant Manager I dealt with and was so disappointed with previously. Interesting.
Anyway, it was agreed that his old CPN (who we had been very happy with) would start seeing Jr again, with a view to taking him out more. I then asked whether there was any progress on a music group (my son is extremely talented in that direction) and they said there was one coming up but they didn't know if there were any places left. I asked why Jr wasn't already on the list and was told they didn't know he liked music! Rather strange as it was something I had mentioned at every single meeting I've ever had with them!!! I pointed this out as a perfect example of why the service was so pathetic and they couldn't really disagree at all. (We got a letter a couple of days later to confirm he was on the list).
So all in all it went rather as we had hoped, but why on earth do I have to go through this time after time?
xxx
Turned out not to be just her, the (current) head of the local until was there as well but they do like to pair up on you so I wasn't that surprised. As an aside isn't it sad that I, and so many other 'service users', see the system that should be there helping us as adversarial?
We went into the meeting room and as soon as we sat down I got the letter they'd sent me out and passed it over to them, pausing, then asking them if they stood by the everything it said. They seemed a bit confused by not leading the meeting and by my question but glanced at the letter and said they did. That was exactly what I wanted to hear and it was game over for them.
I pointed out where they said he attended 'a' and 'b' on a weekly basis. I told them that for various reasons he hadn't been to either for nearly 2 months when the letter was written. How did they not know that? Then I pointed out how the letter said he was receiving regular appointments with a psychiatrist. I then said that whilst the one appointment he'd had with the psychiatrist in the whole year could pedantically be called regular it really didn't fit any accepted or acceptable meaning. I then sat back and said 'Now do you understand why I'm so pissed off?' and all she could say was yes.
We got into the nuts and bolts and it turns out the CPN that we had to ask to leave because she was so incapable of listening no longer works there. Neither does the Assistant Manager I dealt with and was so disappointed with previously. Interesting.
Anyway, it was agreed that his old CPN (who we had been very happy with) would start seeing Jr again, with a view to taking him out more. I then asked whether there was any progress on a music group (my son is extremely talented in that direction) and they said there was one coming up but they didn't know if there were any places left. I asked why Jr wasn't already on the list and was told they didn't know he liked music! Rather strange as it was something I had mentioned at every single meeting I've ever had with them!!! I pointed this out as a perfect example of why the service was so pathetic and they couldn't really disagree at all. (We got a letter a couple of days later to confirm he was on the list).
So all in all it went rather as we had hoped, but why on earth do I have to go through this time after time?
xxx
Sunday, 26 December 2010
Best Christmas Present Ever
Christmas is hard.
My son has a problem with being given gifts as it makes him feel very uncomfortable but as a parent you can't not give gifts! The way I've got round that is rather than giving them to him I leave them outside his room and tell him they're there so he can take them in when he feels comfortable.
I did that yesterday, and a few minutes later sent him a text saying that if he was peckish it might be an idea to have a look. I also said that I knew how hard it was for him and that he didn't have to acknowledge the presents or anything.
A little later I got a text back. It said "I do know it's hard for you as well. Thank you."
I can imagine how difficult even sending me that text was for him and, frankly, I had a lump in my throat when I read it. For me that was the best present ever.
xxx
My son has a problem with being given gifts as it makes him feel very uncomfortable but as a parent you can't not give gifts! The way I've got round that is rather than giving them to him I leave them outside his room and tell him they're there so he can take them in when he feels comfortable.
I did that yesterday, and a few minutes later sent him a text saying that if he was peckish it might be an idea to have a look. I also said that I knew how hard it was for him and that he didn't have to acknowledge the presents or anything.
A little later I got a text back. It said "I do know it's hard for you as well. Thank you."
I can imagine how difficult even sending me that text was for him and, frankly, I had a lump in my throat when I read it. For me that was the best present ever.
xxx
Monday, 29 November 2010
Bullshit
I'm sorry about the title, but I'm afraid it's as polite as I could make it today as I'm absolutely livid!
We finally received a letter about my son's DLA and he has been put on the lowest possible rates. The reasons for this are that their judgement is full of lies about him, downgrading his problems. I won't go into detail about too much but (for instance) he is apparently not at risk of self harming even though he barely has an inch of his body not covered in scars. It's complete and utter bullshit. I've phoned up, and despite having been told a few times that I could speak for him apparently everything I was told previously was (surprise surprise) bullshit. Now there are more hoops to jump through before we can even appeal the decision and it could take months. During that time I'm still not entitled to any benefits. As I said, bullshit.
Second was that I finally got a letter from the Pathways Manager that I saw at the carers day. In her defence the letter appears to have been in the post a while (dated 27/10) but there are a few points. Firstly she specifically promised me a personal meeting rather than a letter, and then there's the content of the letter. Basically she's contacted the local unit and they've just looked at their files without actually checking anything. They say he's seeing a psychologist weekly (at the time the letter was sent he hadn't seen her for 6/7 weeks due to her having an operation) and also that he's attending somewhere else weekly; somewhere that he hadn't been able to go to for over two months. Bullshit. Absolute complete and utter bullshit, and a complete dereliction of their duty of care. The letter also says he's having regular appointments with a psychiatrist – personally I don't feel that having one appointment this year is in any way regular. I've been on the phone to her PA and by chance she's in our town tomorrow so we have an appointment; I feel she won't thank her PA for booking that one!
To be honest I'm absolutely sick of this. The way we've been treated is an absolute disgrace. I honestly feel they rely on you being worn down and giving up, but there is absolutely no way that is going to happen. If needs be I'm quite willing to go back to see my MP, GP, and even my solicitor as this is just not on. It's been incredibly stressful for me, and something that I know my son simply couldn't deal with. In fact just the worry of the letter from the DLA and the lack of money has made him quite anxious over the weekend because whilst he knows he needs help with things he at least doesn't want to be a financial 'burden' as well.
Bullshit.
xxx
We finally received a letter about my son's DLA and he has been put on the lowest possible rates. The reasons for this are that their judgement is full of lies about him, downgrading his problems. I won't go into detail about too much but (for instance) he is apparently not at risk of self harming even though he barely has an inch of his body not covered in scars. It's complete and utter bullshit. I've phoned up, and despite having been told a few times that I could speak for him apparently everything I was told previously was (surprise surprise) bullshit. Now there are more hoops to jump through before we can even appeal the decision and it could take months. During that time I'm still not entitled to any benefits. As I said, bullshit.
Second was that I finally got a letter from the Pathways Manager that I saw at the carers day. In her defence the letter appears to have been in the post a while (dated 27/10) but there are a few points. Firstly she specifically promised me a personal meeting rather than a letter, and then there's the content of the letter. Basically she's contacted the local unit and they've just looked at their files without actually checking anything. They say he's seeing a psychologist weekly (at the time the letter was sent he hadn't seen her for 6/7 weeks due to her having an operation) and also that he's attending somewhere else weekly; somewhere that he hadn't been able to go to for over two months. Bullshit. Absolute complete and utter bullshit, and a complete dereliction of their duty of care. The letter also says he's having regular appointments with a psychiatrist – personally I don't feel that having one appointment this year is in any way regular. I've been on the phone to her PA and by chance she's in our town tomorrow so we have an appointment; I feel she won't thank her PA for booking that one!
To be honest I'm absolutely sick of this. The way we've been treated is an absolute disgrace. I honestly feel they rely on you being worn down and giving up, but there is absolutely no way that is going to happen. If needs be I'm quite willing to go back to see my MP, GP, and even my solicitor as this is just not on. It's been incredibly stressful for me, and something that I know my son simply couldn't deal with. In fact just the worry of the letter from the DLA and the lack of money has made him quite anxious over the weekend because whilst he knows he needs help with things he at least doesn't want to be a financial 'burden' as well.
Bullshit.
xxx
Wednesday, 24 November 2010
Panic
About 11:30 last night there was a frantic knocking on my bedroom door, accompanied by my son calling me urgently.
I panicked. I assumed the worst. It's what you do, frankly.
I called him straight in, fearing what was going to come next.
“Have you got a spare notepad”.
???
Phew.
He was in the middle of doing something, needed to make some notes, and his notepad was full.
All was good, but the shock still stopped me sleeping for most of last night.
That is what it's like, being on edge the whole time, waiting for a disaster because you know that no matter how well things are going right now there is one coming up sooner or later.
It didn't happen last night, but I know it will.
xxx
I panicked. I assumed the worst. It's what you do, frankly.
I called him straight in, fearing what was going to come next.
“Have you got a spare notepad”.
???
Phew.
He was in the middle of doing something, needed to make some notes, and his notepad was full.
All was good, but the shock still stopped me sleeping for most of last night.
That is what it's like, being on edge the whole time, waiting for a disaster because you know that no matter how well things are going right now there is one coming up sooner or later.
It didn't happen last night, but I know it will.
xxx
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