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
Monday 29 November 2010
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
Monday 22 November 2010
"A Schizophrenic Has..."
Let me ask two related questions. Have you ever heard from any media source a story of 'a schizophrenic' killing themselves? Have you ever heard from any media source a story of 'a schizophrenic' killing or trying to kill someone? I'd venture that the vast majority of people would answer no, and then yes. That really annoys me for two reasons.
Firstly it's the way the perpetrator is reduced to a condition. Headlines tend to lead with 'A schizophrenic...' and it's normally not until after you've heard about the crime that you learn anything more, even the name, of the person. Let me put it this way – with virtually any other medical condition (which is exactly what schizophrenia is) you'd only find out about it after a few paragraphs. Now I'm not naïve, I realise that one of the reasons is it's an attention grabber but have a second to think of the way other 'groups' of people are often treated the same. I don't want to widen this into things I have no first hand knowledge of as that's not the point of this blog but to pick two examples that simply don't apply to me how about Muslims and Lesbians. Respectfully, I can easily imagine either word pre-ceeding 'has murdered' or something similar in a headline and it's prejudice pure and simple . Some might prefer to call it stigma against mental health sufferers but I see it as something more than that.
Getting back specifically to schizophrenia there's another dimension in that there must always be an enquiry, and it is bound to be used by the newspapers as a feeding frenzy. These things don't happen quickly, and added to the time (and consequently press exposure) that the crime takes to come to court often one crime can be a regular news item for a whole year. Frankly this breeds prejudice and fear (again there are parallels elsewhere) by not only worrying people about the 'group' but also how they are being 'controlled'. Ask anyone about schizophrenia and it's unlikely they'll be able to talk for long without mentioning violence. Not deliberately or through malice, merely through perception.
Secondly is how rare it actually is. Originally this was going to be a piece about suicide as that is a real and serious concern with schizophrenia, but I seem to have taken a diversion. They are also just normal people with a medical condition who, as normal people do, get angry about things and maybe lose their temper sometimes. Sometimes people lose their tempers and go too far in some way. The truth though is that perception is generally wrong when based on drip-drip reporting.
When my son was first diagnosed his doctor at the YPU spent some time with myself and his Mother to have a chat about any general things about the condition we'd like to know (he'd done the same with our son on his own which was how my son wanted it). One of the questions we asked was, due no doubt to our perception at the time, was about violence. He showed us a set of Home Office figures which showed that, in every category of violence against the person, people with schizophrenia committed way below the average of those crimes. He also showed figures that schizophrenics were far far more likely than average to commit suicide.
That's the truth of the matter, rather than the perception.
xxx
ps – I haven't been able to post recently as I've been rather diverted by something unconnected with this blog but I'm absolutely not abandoning it in any way. I very much doubt it could ever be a daily blog but I aim to put at least two posts up a week, most weeks. Thank you for taking the trouble to read this far.
Firstly it's the way the perpetrator is reduced to a condition. Headlines tend to lead with 'A schizophrenic...' and it's normally not until after you've heard about the crime that you learn anything more, even the name, of the person. Let me put it this way – with virtually any other medical condition (which is exactly what schizophrenia is) you'd only find out about it after a few paragraphs. Now I'm not naïve, I realise that one of the reasons is it's an attention grabber but have a second to think of the way other 'groups' of people are often treated the same. I don't want to widen this into things I have no first hand knowledge of as that's not the point of this blog but to pick two examples that simply don't apply to me how about Muslims and Lesbians. Respectfully, I can easily imagine either word pre-ceeding 'has murdered' or something similar in a headline and it's prejudice pure and simple . Some might prefer to call it stigma against mental health sufferers but I see it as something more than that.
Getting back specifically to schizophrenia there's another dimension in that there must always be an enquiry, and it is bound to be used by the newspapers as a feeding frenzy. These things don't happen quickly, and added to the time (and consequently press exposure) that the crime takes to come to court often one crime can be a regular news item for a whole year. Frankly this breeds prejudice and fear (again there are parallels elsewhere) by not only worrying people about the 'group' but also how they are being 'controlled'. Ask anyone about schizophrenia and it's unlikely they'll be able to talk for long without mentioning violence. Not deliberately or through malice, merely through perception.
Secondly is how rare it actually is. Originally this was going to be a piece about suicide as that is a real and serious concern with schizophrenia, but I seem to have taken a diversion. They are also just normal people with a medical condition who, as normal people do, get angry about things and maybe lose their temper sometimes. Sometimes people lose their tempers and go too far in some way. The truth though is that perception is generally wrong when based on drip-drip reporting.
When my son was first diagnosed his doctor at the YPU spent some time with myself and his Mother to have a chat about any general things about the condition we'd like to know (he'd done the same with our son on his own which was how my son wanted it). One of the questions we asked was, due no doubt to our perception at the time, was about violence. He showed us a set of Home Office figures which showed that, in every category of violence against the person, people with schizophrenia committed way below the average of those crimes. He also showed figures that schizophrenics were far far more likely than average to commit suicide.
That's the truth of the matter, rather than the perception.
xxx
ps – I haven't been able to post recently as I've been rather diverted by something unconnected with this blog but I'm absolutely not abandoning it in any way. I very much doubt it could ever be a daily blog but I aim to put at least two posts up a week, most weeks. Thank you for taking the trouble to read this far.
Friday 5 November 2010
I'm Lucky
Whilst the subject of this blog generally leads to rather depressing posts please make no mistake that I feel very lucky.
I adore my son and adore being a father. OK, it's hard sometimes but that's what being a parent is and I think it's just basic nature to want to look after my son. Despite his problems he is an amazing, articulate and intelligent person who I am incredibly proud of.
I'm lucky enough to have some of the best and truest friends anyone could ask for. I know that when I'm down there are a few people that not only understand what I'm going through but are always willing to listen to my moans. Absolutely priceless.
On the subject of friends I'm also lucky that when I moved back here I, quite by chance, hooked up with a load of people I've known virtually since childhood. My local pub is more a social club than a pub and not only is there always a friendly welcome but also it's an escape if I want it to be.
My Mum. OK, she's pretty clueless when it comes to looking after my son but she is always willing to help and genuinely tries her best.
Me. I'm strong. I was brought up to be strong and cope with whatever came along and couldn't do it if I was any different. I know, from things I've been through in my life, that I can cope with pretty much anything.
Little things. I've always appreciated the little things in life as they are what makes it matter. This has meant that I've always been able to appreciate and praise any little thing my son achieves. Sometimes he just looks at me as if to say 'yeah but that's nothing' but I know he appreciates the backing.
The internet. Seems silly to mention but the amount of information (after ignoring rubbish sites!) available is amazing. Not only that but it helps connect with other people that might be going through similar things.
For all those reasons, and many more, I genuinely feel lucky.
xxx
I adore my son and adore being a father. OK, it's hard sometimes but that's what being a parent is and I think it's just basic nature to want to look after my son. Despite his problems he is an amazing, articulate and intelligent person who I am incredibly proud of.
I'm lucky enough to have some of the best and truest friends anyone could ask for. I know that when I'm down there are a few people that not only understand what I'm going through but are always willing to listen to my moans. Absolutely priceless.
On the subject of friends I'm also lucky that when I moved back here I, quite by chance, hooked up with a load of people I've known virtually since childhood. My local pub is more a social club than a pub and not only is there always a friendly welcome but also it's an escape if I want it to be.
My Mum. OK, she's pretty clueless when it comes to looking after my son but she is always willing to help and genuinely tries her best.
Me. I'm strong. I was brought up to be strong and cope with whatever came along and couldn't do it if I was any different. I know, from things I've been through in my life, that I can cope with pretty much anything.
Little things. I've always appreciated the little things in life as they are what makes it matter. This has meant that I've always been able to appreciate and praise any little thing my son achieves. Sometimes he just looks at me as if to say 'yeah but that's nothing' but I know he appreciates the backing.
The internet. Seems silly to mention but the amount of information (after ignoring rubbish sites!) available is amazing. Not only that but it helps connect with other people that might be going through similar things.
For all those reasons, and many more, I genuinely feel lucky.
xxx
Monday 1 November 2010
Peace and Quiet
Last Tuesday was absolute bliss.
Last week we went up North again so Jr could see his mother as she hasn't been down once since we moved last year. Drove up Monday and after a couple of hours round at hers to make sure he was settled I went to stay with a dear friend for a few days.
She had to go to work on Tuesday and originally I thought her elder daughter was going to be in but she went out for the day as well. 10 am and the house was empty. Silent. I had a day and absolutely nothing to do or to worry about.
Then my friend called – she'd left something at home she needed and could I get it sent over in a taxi. Well as it wasn't far I jumped in the car, dropped it off and headed back. 10:45 and I was back in the empty house having a cuppa. I just sat there for a while enjoying the absolute silence and then made some lunch. After lunch I took a stroll to the local shop, bought a paper, and spent the afternoon slouched on the sofa reading it from cover to cover. I genuinely can't remember the last time I was able to do that and such a simple pleasure gave me so much joy. I even did the soduko, and I'm not really into puzzles.
Around 4:30 the door went and my friend was back, with her younger child who she'd picked up from nursery. Elder daughter turned up half an hour later and we had a lovely evening but nothing could take away from the joy of solitude I'd felt earlier.
It probably seems silly to most people, taking so much joy from something so little, but it's such a rare occurrence for a carer that it really is something to savour. Respite care works for some but with Jr's trust issues it's a non-starter but I didn't even worry about Jr as I know that as his mother finds it difficult to deal with him when he has problems she would call me at the first sign of any problems (of which there weren't at all).
My friend noticed how relaxed I was and commented on it in the evening. She even offered to take the kids out the next day to give me another day's peace and quiet but I didn't want to get too used to it; anyway they're an adorable family and spending time with them is always a pleasure.
xxx
Last week we went up North again so Jr could see his mother as she hasn't been down once since we moved last year. Drove up Monday and after a couple of hours round at hers to make sure he was settled I went to stay with a dear friend for a few days.
She had to go to work on Tuesday and originally I thought her elder daughter was going to be in but she went out for the day as well. 10 am and the house was empty. Silent. I had a day and absolutely nothing to do or to worry about.
Then my friend called – she'd left something at home she needed and could I get it sent over in a taxi. Well as it wasn't far I jumped in the car, dropped it off and headed back. 10:45 and I was back in the empty house having a cuppa. I just sat there for a while enjoying the absolute silence and then made some lunch. After lunch I took a stroll to the local shop, bought a paper, and spent the afternoon slouched on the sofa reading it from cover to cover. I genuinely can't remember the last time I was able to do that and such a simple pleasure gave me so much joy. I even did the soduko, and I'm not really into puzzles.
Around 4:30 the door went and my friend was back, with her younger child who she'd picked up from nursery. Elder daughter turned up half an hour later and we had a lovely evening but nothing could take away from the joy of solitude I'd felt earlier.
It probably seems silly to most people, taking so much joy from something so little, but it's such a rare occurrence for a carer that it really is something to savour. Respite care works for some but with Jr's trust issues it's a non-starter but I didn't even worry about Jr as I know that as his mother finds it difficult to deal with him when he has problems she would call me at the first sign of any problems (of which there weren't at all).
My friend noticed how relaxed I was and commented on it in the evening. She even offered to take the kids out the next day to give me another day's peace and quiet but I didn't want to get too used to it; anyway they're an adorable family and spending time with them is always a pleasure.
xxx
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