Monday, 17 October 2011

In Sickness and in Sickness

We've been under this mental health unit for two and a half years now.

The unit psychiatrist has been on long term sick for most of that time and still is – no return date.

The CPN has been on the sick for around a month now after many short spells and is now on long term sick with no return date.

Unit manageress (who is supposed to be our contact there and is the third manageress since we've been here) – now on long term sick with no return date.

I have no idea what health problems any of these people have and am not in any way suggesting any of them are anything but genuinely sick, but how on earth can they provide continuity of care under these circumstances?

We are now in a situation where there is no one at all working at the unit who has the slightest first hand knowledge of my son. We have no appointments for when the therapy he's been having with his CPN will continue. We have no real contact at the mental health unit, and no idea as to when this situation will change.

We are basically on our own until goodness only knows when.



Wednesday, 12 October 2011

Duty of Care?

Really? Anyone? Working in mental health with the slightest inclination to provide a service? If there are, I'd love for some of them to come and work at Jr's unit because the sheer incompetence and lack of interest is staggering.

Four weeks ago we got a call to cancel an appointment he had with his CPN because the bloke was off sick. Fair enough, people get sick. It takes a long long time for Jr to build up any trust with people and to be fair this guy is (was?) proper so when I was asked if we wanted someone else to do the appointment we decided it would be at best pointless and at worse counter-productive. I did ask whether the sickness would be long or short term and was told they would know more after the weekend. Fair enough, so I asked her (the unit manageress no less) to call me after the weekend and keep us informed as to what was happening, which she promised faithfully to do.

This afternoon I got a call from her assistant (apparently the manageress is now on long term sick leave). Not about what was happening with the CPN, but asking why Jr hadn't been able to attend his music therapy for the last few weeks. Pardon? Yes, she said, he hasn't been for the last 3 weeks so they were wondering why. Except he has been going, every single week. There was a small incident 3 weeks ago where he had to leave after a short time because he didn't feel comfortable but the youth workers at the studio (nothing to do with mental health – straight youth workers) had worked out what the problem was and managed to solve it superbly and he hasn't missed another minute of a session at all. But, apparently the 'liason' from the unit had been down there every week and had noted Jr wasn't attending at all. Now before you think it might be easy to miss someone being there, firstly surely that would be hugely incompetent, but more importantly the sessions are run in a very small room so it would be pretty much impossible to miss someone sat there. Also Jr doesn't go for a break at all so he's always sat at his terminal working away. Shocking, absolutely shocking.

So after explaining that to her I asked about the CPN and why we hadn't heard what was happening. Now I could have phoned up and chased it but Jr was happy to let it ride and see how long it would take them to get back to us (as he didn't want to start with another person) so we waited. She was a bit surprised that no one had got back to us (we weren't) and said he was off for at least another 2 weeks when they'd know more. Obviously I have no idea what his reason for being of sick is and have no interest in speculating but the effect is that Jr isn't getting the treatment he so badly needs and no one can tell us what is happening. For someone who suffers from extreme paranoia it is so obviously wrong that he's just been left to his own devises yet again, with no real back-up plan.

She said she'd get back to me. I didn't hold my breath but amazingly 10 minutes later the liason called me to say that she had been to the sessions the last couple of weeks and that Jr hadn't. Obviously I pointed out that having taken him there, waited until he felt comfortable, and then gone back to collect him at the end of the sessions I knew for certain that he had been. She then told me he'd probably left the building without me knowing! Well firstly if you're going to put on someone's notes that they're not attending maybe it would be a good idea to check if he was really not there (even if he had popped out for a few minutes), but secondly and more importantly we're talking about someone so frightened by life that they can't come downstairs in their own house if the front door is open or if anyone is there. Am I supposed to believe for a second that this person would leave the building and wonder around town (the studio is pretty much slap bang in the centre of the town next to the market) alone? On market day? Come of it. More to the point I see the brilliant guy who is running the course at the end of each session and he always tells me how my son has been (because, to put it bluntly, he actually cares) so I know 100% that he's been there.

I'm sorry to those who find this blog pretty much unrelentingly negative, but that is what it's like dealing with Jr's mental health unit. If it wasn't so bloody serious I'd call them a joke.


Friday, 30 September 2011

Let Them Eat Cake

With the news that £250million has miraculously been found for bins to be emptied on a weekly basis there's been a thing going round twitter about what the money could be better spent on and I pointed out that it would provide a year's worth of weekly music therapy for 500,000 disabled people such as my son.

Music therapy is probably the oldest form of therapy there is, from the first time a caveman started banging bones on rocks no doubt. It's also recognised as one of the best therapies there is as many find it easier to communicate through mediums such as this, not to mention the basic fact that it gets people together. Surely more important than a weekly bin collection you might think?

Well not for some.

One reply I got was that the person wanted their bins collected weekly and people could just listen to the radio.

This is the world we're living in. A world where people simply don't care about anything other than their own comfy lives in suburbia.

And people wonder why I get angry!


Wednesday, 14 September 2011

I'm a Benefit Scrounger...

...and so is my son. I've read and heard plenty recently that proves it beyond any shadow of a doubt. The proof we're benefit scroungers – well it seems the only proof needed is that we claim benefits!

Is that fair? Of course it's bloody not, but it's the way people are being trained to think about people on benefits due to the drip drip of lies (mainly from or led by HM Government) in the press.

Take my situation. I left school on a Thursday in 1984 and started work the next Tuesday; it was Easter weekend after all! I hadn't had much choice about it as although I was doing my 'A' levels my family couldn't really afford to support me at the time and my potential income was needed. Not a problem, I found a job fairly easily and was lucky enough to find it to not only be a fairly good job, but one I also enjoyed greatly. In fact I far preferred it to school and threw myself into it.

Over the next 20 years or so I worked at a few different places. Again I was lucky that I enjoyed every job and as I found doing nothing incredibly boring I worked hard. And I was good at it, good enough to regularly get promoted and also to be head hunted a couple of times. I was also lucky enough to be comparatively well paid for what I was doing, certainly well paid enough to have decent savings and to have bought a house. Basically, I played the game as we were told to play it.

In all that time I only had one experience of benefits. A firm I was working for went bankrupt and having nothing lined up (to say it happened rather suddenly is an understatement) so I trotted off to the local DHSS as it seemed the logical thing to do. I walked in on a Friday and filled all the forms and what have you. On the Saturday I got another job through a friend so on the Monday I signed off again.

Then my son got ill and I gave up work to look after him. That was 7 or 8 years ago. I never even thought of claiming benefits as, to be frank, I had savings and didn't need anything extra to get by. I did sign on at the local job centre, but that was simply for the age old (and now pretty useless to be honest) tradition of getting your stamps. I made my situation clear and was clear I wasn't applying for benefits or looking for work but after a while it became such a chore, and as I found a pointless one, that I stopped bothering.

Last year I started to claim carers benefit as the savings were gone and I needed something to support me. I've documented elsewhere on this blog the problems I had but in my 40s I was receiving benefits for the first time. And despite paying a lot of taxes for many years (never begrudged) and using up my own savings to look after Jr (which again I have no problem with) I get told I'm now a benefit scrounger purely because I happen to be claiming some much needed benefit at this point in time. The rather obvious fact that if I wasn't here he'd have to be in full time care at a far greater cost makes no difference to me being seen by some as a scrounger.

That is how ridiculous the situation is becoming. I'd say it's fairly obvious from the above that I'm no kind of scrounger and simply someone who need the state to fulfil it's duty of care to those in need. I don't even want to be on benefits – nothing would give me greater pleasure than to be out working every day but I simply can't in my situation. Simply by claiming I'm perceived by many as a scrounger.

So I've made my case. I think any benefits I receive are wholly justified and I think it's grossly unfair with my history to call me any kind of scrounger.

But...should any of that matter? Should the fact I've 'paid in' for most of my life separate me in perception from people in other situations? Would it be right to call my son a scrounger as he has never been able to work at all? Or if my son had a different condition that had presented when he was a baby and I'd had to give up work after only a few years should that make people view me any different?

Of course not. I've waffled on a bit about my history, not to big myself up at all but to make the point that people in need of benefits are not scroungers, regardless of their history. People with disabilities NEED help, and need more help than most people. People without work (and let's be honest there ain't a lot of it around these days) need money to get by. Carers such as myself need financial help. The benefit system isn't (and should never be) about getting out what you've put in, it should be getting out what you can't get for yourself and therefore need to get by.

Obviously there are some people 'swinging the lead' out there, only a fool would deny that. They annoy me as much as they annoy the most rabid Tory but they are by any measure a tiny minority and it's incredibly unfair, not to mention offensive, that people are now being branded scroungers and demonised purely on the basis of them receiving benefits without any regards to the facts of their situation.


Thursday, 25 August 2011


If you've read this blog before you'll know about the trouble we've had trying to get funding for a music group and the ridiculous amount of time it's taken to organise.

Well I went to a meeting about it this morning. From the very first meeting it's been stressed to the two people from the MHU that are liasing that it HAD to be in the afternoon as many of those on the course take rather heavy medication that makes mornings very difficult, my son especially.

So what happened this morning – well the two idiots smugly told us that THEY had arranged everything and that the course would start in the second week of September – at 10:30am!

How the hell is 10:30 in the afternoon? What world do these fools live in? When I said that was a ridiculous time as it had been agreed from day 1 that it had to be in the afternoon for people to benefit from it I was told that they'd 'forgotten' and then told that they had tried to get it in the afternoon.

Why try to get in the afternoon if they'd forgotten it had to be in the afternoon? Another bloody lie. Or that should be yet another bloody lie. I'm no idiot and can follow a conversation and am sick to death of this crap.

Worst of all I've just had to tell Jr the time for it. He's been seriously looking forward to this for most of the year and now is completely crest fallen and frankly I'm wondering when I'll get a decent night's sleep again because this is a big set back for him.

Thanks a lot to the idiots who frankly don't give a toss and are more interested in getting a photo taken at the first session so they can, no doubt, get their stupid faces in the paper. Well I really hope there is a journalist there because I will be talking to them, and if not I will certainly be contacting the paper after the photo of the smug is published to tell them what really happened because no doubt they'll try to make this out as some great success for the unit when it's US that have done nearly all the work and US that (as always) end up getting ignored.

Yes, I'm livid.


Tuesday, 12 July 2011

Moving the Invisible.

We're moving again.

Not too far, just somewhere in the same town. When we moved back a couple of years ago where we were staying was only temporary but the lack of treatment Jr received meant he didn't feel ready to move on for a long time but he does now.

You wouldn't think it would be too hard to find someone willing to rent us a place as we have cash for the deposit and first couple of months rent and we've got absolutely perfect references from our two previous landlords. But it is.

You'd think there's be people, baring in mind Jr's condition, able to offer help finding somewhere. Well the local council could only offer us places that would, frankly, scare the life out of Jr. Don't take this the wrong way, we're not being snobby or anything, but his phobias mean a lot of things scare him so a loud, somewhat violent, estate is out of the question.

Then we tried the local YES (Youth Enquiry Service). With Jr fitting comfortably into their age remit I thought if I went down and explained the situation they may be able to advise me. Did they heckers like! The bloke I saw was just plain ignorant and at first refused to help at all because Jr had me to look after him. Even though I explained his mental conditions the prat said that he would only offer any advise if Jr came in on his own and wanted a place on his own. Er, excuse me you pillock, if I wasn't caring for him he would be in a bloody residential home. OK, I was far more polite than that but my thoughts were far less polite. Finally, like getting blood out of a stone, he gave me a phone number. Turned out to be a 'deposit guarantee scheme', which as we have a deposit was no help.

I phoned various other organisations but there was always some excuse as to why they couldn't help, or on occasion helpful people who simply couldn't help. You may be wondering why I haven't mentioned the local MHU (actually if you've read this blog before you probably aren't). Well I started there and believe it or not the ONLY help they could offer was to give me the number of the local council's benefit advise line. Really, an MHU that provides NO help or advise with housing?

Yeah, sod it, we're on our own again. Off down the High Street.

As (at least in part) the rent will be paid by housing benefits that shuts many doors. The outdated (and now technically incorrect) mantra of 'No DSS' is alive and well in this town. Even a cast iron guarantor doesn't seem to make a difference to most agencies, and we need to go through an agency rather than a private landlord because of the extra security that gives Jr.. Finally we found one (agent) who was willing to be helpful and willing to put our case to owners but she advised that having 'a job' would make it so much easier.

OK, lesson learnt. I have a friend who runs a business who has been kind enough to provide me with a letter saying I'm starting work there soon so we can just bluff it and the landlord need never know. A bit naughty but you do what you must.

We are the invisible people. We are the ones that people want to shove in a corner and forget about. We're not looking to live in luxury in a 5 bed detached on housing benefit, merely a simple 2 bed flat in a not horrendous area. In fact the places we've been looking at actually come in comfortably under the new benefit cap, even in this affluent area.

Thankfully the agent we're dealing with now has taken the trouble to find out exactly what we need. That in itself is difficult as (for instance) we went to see one place yesterday that on paper could have been perfect, but when we got there I noticed something abstract that would have made it a very difficult place for Jr to live. Despite my reasons probably sounding strange to the lady, she accepted it immediately and even suggested another property we were planning to see would probably fail for the same reason. In fact I've nothing but praise for this young lady who seems to be willing to spend an absolutely inordinate amount of time getting round our situation and hopefully in a couple of weeks we'll be on the move.

But, why should something so simple be so difficult for one so vulnerable? Yet again I'm sickened by the uncaring attitude we have to face. One agent, although they certainly didn't say it in so many words, made it fairly obvious that Jr being handicapped meant we wouldn't be renting from them. As soon as I mentioned who/why the second person renting would be his attitude changed completely and it was obvious the way it was going.

We just want somewhere basic to live. Is that too much?

As always one thought burns in my mind. Jr has me to take the stress and sort this out, but what about all those with no one effective to do that for them?


Tuesday, 24 May 2011

Living with Schizophrenia

As today is National Schizophrenia Awareness Day I thought I'd talk about the effect my son's schizophrenia has had on my life, what with this being a blog about being a carer..

Before his diagnosis I was in a well paid job (I was on 6 months unpaid leave at the time to look after my recently widowed Mother), working long hours but enjoying my career greatly. I owned my own house (although I was living at the other end of the country and renting it out) and had good savings. I'd always intended that when he took his gap year before university I was going to move back to Spain and buy an interest in a business over there. Everything was going great and my whole life was planned out.

The last 8 years or so have ended those plans. I had to give up on any idea of work to look after him and with that went (over time) the savings. Then I had to sell the house, luckily at a time when the property market was in a good enough state for me to make a decent profit on what I owed mortgage wise. I never claimed any benefits as firstly I doubt I'd have been entitled to them with my savings at the time but more importantly because I always thought we would 'get through it'. I don't mean that my son would be cured or anything silly, but that there would be the care available to him to enable him to live a reasonably normal life for himself. This simply hasn't happened and if anything the lack of available care has made his condition worse through inaction.

Now I'm skint. Don't get me wrong, I don't begrudge using my own money to look after my son in any way but the fact is that I have spent a large amount of money to be able to give him the care he needs. I won't talk about the problems I've had getting benefits as I've covered that elsewhere but the rubbish we've had to go through has been disgraceful.

Of course, whilst money is important there are far more things that have changed for me.

I guess one of the biggest changes is where I live. From a beautiful cottage in a tiny hamlet to having to live with relatives. Being Spanish living with family is a lot more normal than maybe it is to English people but it's still restrictive and at the end of the day you're still living in someone else's house. We've been here 2 years and probably 80% of my possessions are still boxed up from the move.

Then there is money. From being in a position where I didn't really have to think before spending money (although fortunately I've never been a spendthrift type of person) now every single penny counts. From little things like not buying newspapers and instead reading them on-line, to having to buy the cheapest of everything available, to not buying stuff I probably need as I just can't afford it, money is something that I have to think about almost every single day. It's just another worry to add to the pile.

Friends? Well I'm lucky that so many of my friends are incredibly understanding and put up with me having a good old moan without complaint, but there's only so many times you can be invited to something and have to say no before people start inviting you less. I try to get out a couple of times a week but sometimes that has to be cancelled at the last minute. My son tends to be able to cope far better if he knows I'm going out well in advance, and generally for these 'pre-booked' nights I'm OK, but the 'Come over, it's a lovely day and we're having a barbecue' invites almost always have to be turned down. I do feel far more isolated now than I ever have in my life and often feel quite lonely.

Health? As a carer you're so wound up in the person you care for that your own health takes a back seat. I always used to generally be in great health but now it's one thing after another. Nothing major, but colds and stuff like that are regular visitors to my body. Then there's the mental side of health and in common with many carers I suffer from depression. As much as I adore my son and am more than happy to look after him, it is bloody depressing day after day after day.

Transport? Well my son's paranoia means walking anywhere is a no go. He just can't cope with it. Every trip out to appointments etc requires transport and as my car gave up the ghost last year that means either relying on the kindness of people lending me a car, or of arranging a taxi. Even then sometimes there will be something about the driver which brings on his paranoia and they have to be sent away and another booked, and obviously that ends up costing more. Everything is so much more expensive when you're dealing with someone's phobias and paranoias.

Moaning? Oh do I moan these days! I was always a happy-go-lucky type person who never let things get to me but these days I always seem angry. Often it's down to my caring role as there simply isn't the service and support out there that there should be and I seem to have to fight everyday to get what my son needs, but I have noticed a change in my general demeanour (related to the depression as well I guess) in so much as almost every little thing makes me angry. I'm not talking about a violent type of anger, just a festering feeling that never seems to leave me. On the other hand I have to almost fake positivity in front of my son.

The future? What future? I have enough trouble getting through each day so thoughts of the future just don't happen. Day by day, that's the only way I know to get on with things and it's probably a mantra to many carers. In fact the only thoughts I really give the future is worrying about what would happen to my son if I wasn't around. How would he survive? Would he be able to cope with being in residential care that he'd need with all his phobias? I doubt it and it's something that occurs to me every single time I feel at all under the weather, which seems to happen more and more.

And then there is the abuse that I mentioned in my last posting, ironically then given voice by someone in the comments. 'Stop bleeding the state dry' type comments are all too common, as are various types of 'street abuse'. It's a fact of life these days and has got far worse with the vilification of the disabled (and by association carers) that is all to prevalent these days. Yes we both get benefits these days, but we need them and if society is really judged by how it looks after it's weakest and most vulnerable people surely it is right that we receive them at a level that enables us to live a basic life. So many things cost more if you're caring for someone because of what you need. I've mentioned transport but food is another problem. My son has long had phobic problems with food so the actual food, and it's preparation, is very important. Not only that but sometimes no matter how much care has been taken something will happen to put him off that meal but he still needs to eat so a meal is wasted. In fact it's got to the stage where I will often cook for him first so I can eat it if he can't rather than have to spend more.

But the biggest, hardest thing is the constant worry. How will he be today? What will I need to do to help him today? Can I help him today? And worst of all, as suicide is not at all uncommon and he has indeed tried a couple of times, there's the constant worry that maybe today is the day he won't wake up. Every single day hearing him move around for the first time sends a wave of relief through me.

Obviously everyone that suffers from schizophrenia is different (in much the same way that two people can get the same cold but suffer to completely different levels) but what I've written is the reality that I face with how my son's condition presents. I absolutely adore my son, but it's not easy looking after him and being there for him. Having said that I wouldn't have it any other way.


Tuesday, 10 May 2011

He Doesn't Look Disabled.

And there is the crux of the problem with many disabilities – unless people can see something obvious (like a wheelchair for instance) then people don't accept it.

My son is 22. He's over 6 foot tall and dresses in combats and hoody type clothes. If you saw him walking down the street you'd probably imagine him to be just another moody youngster, and you may even be worried by his appearance. But inside there is someone suffering from very difficult to deal with conditions and someone who is constantly terrified by the simplest of things. Someone who suffers from something called selective mutism and so can't actually talk to people. Someone who might even appear arrogant in his lack of communication with the world, but simply can't. Someone for whom actually going outside to walk anywhere is a stressful and difficult thing to achieve.

Of course there are many other disabilities where the people can converse but due to their condition may wrongly appear 'a bit simple'. Normally they are far from simple, they merely think about things and process information in a slightly different way that YOU don't understand. There are so many different 'hidden' disabilities that present in so many different ways, and there are probably people suffering from all of these walking down your street, anonymously, but waiting to be in some way abused.

I've mentioned before how my mother has been working in centres for people with mental disabilities for many years so being around people who are different is something I got used to but when it's your own flesh and blood it's different. You see you have to deal with the comments and insults. I grew up well aware of people's intolerance and could give so many examples but one sticks in the mind more than most. One of my mother's trainees (the term used then) had very little experience of going out so part of my mother's job was to help him get into the habit. He found it very difficult and especially found making choices in shops difficult. I clearly remember going out to town with them (as I often did) and we were in a newsagents. He wanted a chocolate bar but was having trouble deciding between two. This was a real dilemma for him but rather than just being patient the shop keeper started getting angry and told him in no uncertain terms to hurry up. It's true that we'd been stood in front of the chocolates for a few minutes but on the flip side it's also true that we were the only people in the shop the whole time so we weren't holding anyone up or anything. Well my mother's trainee got very stressed and we had to leave the shop, followed by a torrent of abuse. It was months before he could go to the shops again.

I was amazed and shocked by what happened and was even more shocked that my mother said it happened quite often.

These days, on the rare occasions my son goes out, I see it all the time. The tutting, the comments that we're not supposed to hear, the looks. All of them in effect saying he's being ignorant. And all of them fully understood by my son, each one making it more and more difficult for him.

Next time someone doesn't react exactly the way you expect them to don't automatically think they're being ignorant. Don't get me wrong, there are a lot of ignorant people around but there are also one hell of a lot of people that need that little extra help and understanding. Don't assume, but please do bear in mind that the person you're dealing with may just be wired differently and think differently.

And always remember that it's only because they are the minority that the way you think is considered normal.


Tuesday, 19 April 2011

Just Another Day

Just thought it might be interesting to write up a random day and what I do.

7am Wake up. When I say wake up it's actually the forth time of the night but time to get up.

8am Had breakfast and a shower. Jr still asleep so have a mooch through the newspapers online.

9am Jr still asleep so a cup of tea and decide to catch up on some paperwork.

10am Give Jr a knock as he has a drop-in group at 11am. He comes downstairs 10 minutes later asking what time we're leaving. He looks pretty zonked and I know he's having terrible trouble with his sleeping patterns right now. A few minutes later he's back and says he can't manage it today which is no surprise.

11am Jr asleep again. Need to nip down to the local shop for a couple of bits and pieces but decide to put it off a little to give him a chance to either wake up or be 'well asleep'.

Mid-day Friend has just phoned to invite me to dinner tonight but with Jr being a bit at sea sleep wise it's going to be impossible so I sadly decline. Luckily my friends are not only used to that, they're also understanding. That's important.

1pm Been to shop for bits and pieces and switch on telly for news. Jr still asleep.

2pm Had some lunch after news and now doing some washing. Jr still asleep.

3pm Bored. Can't be bothered to watch telly and not in the mood for reading. Decide it's time to sort summer/winter clothes out. Jr still asleep.

4pm Clothes sorted and Jr still asleep. Switch telly on – Noel Edmunds. Switch telly off. Spend some time looking at things I can't afford on ebay.

5pm Hear Jr stirring upstairs. Start on dinner, or for Jr breakfast.

6pm Dinner ready so call Jr and he comes down for it a few minutes later. Muffled thanks and he takes it back to his room.

7pm Plates just come down so doing washing up. At least he's eating ok this week.

8pm No doubt Jr is by now engrossed in an online game in his room. I'm bored again. Also wondering when he'll be going to sleep tonight.

9pm Watching DVD. Pause it to make cuppa and whilst I'm in the kitchen Jr comes down and asks if there's enough water in the kettle for him to have coffee. There is so he goes back upstairs and brings down his mug and coffee. We kind of chat for a minute but he's a bit tetchy so I go back to the front room and leave my tea to brew. A few minutes later he brings the made cuppa through to me which, as it turns out, is the highlight of my day. I thanks him, and he almost smiles.

10pm Feeling tired but can't go to bed yet so put some music on.

11pm Jr has just come down and isn't feeling too well. It's going to be a long night.

Mid-might I can still hear noises from Jr's room so I knock and ask if he's ok. He says he is.

1am Jr is pretty settled now and I go to bed. Don't sleep.

2am Still awake. On edge. Going to be one of those nights.

3am Looking at rubbish on youtube. Jr still awake.

4am Bump into Jr again in kitchen and he says going to sleep now. I go back to bed but still can't sleep.

5am Knackered. Awake. Gently knock Jr's door but no reply so he must be asleep now.

6am Sleeping fitfully. Maybe 20-30 minutes at a time before waking up with a start.

7am Knackered but wide awake. Another day. And people think this life is easy?


Wednesday, 6 April 2011

Good Week

They do happen – not that often but...

Firstly my son's benefits. 1 week short of a year his DLA is finally more or less sorted. The appeal has gone through and the care component has been rightly put back up to the top rate, although we will be appealing the mobility section as they have, with no reasoning, left that at the minimum rate. The care component is the more important of the two but after all the trouble they've caused for us I won't give up until we get every damned penny that he's entitled to. Before I gave up work to look after him I was pretty much always on a high tax rate and I also didn't claim (for myself) for the first few years as I had ample savings so whilst I don't think that entitles us to anything extra it bloody annoys me that after trying to do things the right way we've had to go through hell to get anything.

Also we found out about a pop-in centre in a local church hall for mental health service users. Last Thursday we went for the first time and frankly I wasn't hopeful that he would want to go again. It's virtually impossible to tell what he's thinking when we're out as his mutism and social phobias make him seem totally locked into himself, even though he is actually incredibly attentive to what's happening. He can communicate with me when we're out, but it's only really basic and through tiny, almost imperceptible hand movements. Anyway, we stayed about half an hour whilst I chatted with the woman that ran the group and then left as I didn't want to be there two long and for him to get stressed. When we got back to the car I asked him if I'd got anything I had said on his behalf wrong (a check we go through after every appointment as whilst I can answer most questions regarding him I do like to make sure that I haven't got anything wrong) and he said there wasn't. I then asked him what he thought of going again and was pleasantly shocked when he said he'd be willing to go again. Little things like this will be so important to him as every step to be able to cope with society face on is a massive step for him. Hopefully this could be a start (yet again).

So all in all a good week!


Thursday, 24 March 2011


(This was my third attempt at writing this piece – and the first time I managed it without it being mainly profane!)

DWP apparently stands for the Department of Works and Pensions. I think it stands for something completely different and far less polite.

When I was a teenager I was in a few bands. None worth remembering to be honest, but in addition to that I used to write lyrics for quite a few local bands of the time as I found it extremely easy to write the story people wanted to put to their tunes. One song I wrote was called 'The Quisling Clinic' and was about someone visiting the (then) DHSS and there was a part in it where the person asked 'What truth' and the interviewer answered 'Our truth'. Dealing with the DWP made me think of those lyrics for the first time in 20-odd years.

Now if you've been following you know the hellish time we're having getting my son his rightful DLA but I want to talk about two specific attempts to get information from them which (I think) show what a heartless and absolutely useless service they offer.

As nothing was happening I phoned up for an update. Now legally I'm allowed to handle all my son's affairs and the DWP have all the paperwork they need to prove this. So I phoned up and was asked various security questions. One of those questions was how much DLA does my son receive and as I couldn't remember the exact amount to the penny I told them it was minimum rate on both components. As this is a set rate the person I spoke to was fine with that and after only half an hour I was finally put through to a supervisor who was willing to actually explain what was happening – being told initially that the appeal would take up to three months wasn't an answer as far as I was concerned. Now to be fair to the supervisor I spoke to he was actually being quite helpful...until the line went dead. So I phoned up again. I got asked the same questions and gave the same answers. Not good enough I was told – they wanted not only the exact amount but the last time it was paid into my son's account. Now as my son had had a rough night and was asleep I didn't want to wake him to get the paperwork and I explained that. I was told they wouldn't proceed until I gave the exact amount – minimum rate (a set amount as I've said) wasn't good enough and again I was asked exactly how much and in frustration said 'As little as you can get away with'. Now I should stress I was polite the whole time, I did not even come close to being abusive or rude and the most I could be accused of was sarcasm. 'If you are not going to help I'm going to stop this call' I was told. If I'm not going to be helpful!!! I then demanded to talk to someone else (I'd already explained how I'd been cut off) and was told that my attitude was wrong and they hung up on me. Absolutely disgraceful but by no means uncommon attitude from a department that is obviously not fit for purpose. By now I was extremely angry and not in the mood to go through there rubbish again so I left it.

A couple of days later I got a couple of forms from them. Rather confusingly one asked for specific permission to contact someone regarding the claim and the second a rather airy-fairy permission to contact anyone form. These two forms together made absolutely no sense, and also the letter was very unclear about whether I or my son should sign them. Back on the phone to the DWP and, with barely any security questions being asked, I had the forms explained to me. When I say explained I mean I was told I just had to sign them and send them back. I asked again for an explanation as to the contradictory nature of the two forms and was told that's how it's done. Well I'm sorry but I would have to explain to my son what was going on and you can't tell someone who suffers from paranoia 'that's how it's done'. Finally I was put through to a supervisor who asked me to hold on while he looked through the file, and after having me on hold for a couple of minutes he came back on and asked to call me back. To be frank I wasn't hopeful but he did indeed phone back around 10 minutes later and I was told that the forms had been sent in error and that there was no need to return them, despite what I'd been previously told. I managed to find out that the appeal was on hold already the previous time I'd called (for these not needed forms) but even worse than that was the fact that the claim was on hold for nearly two weeks before they sent the forms to me! Has to go through the process I was told. What utter...well I'm trying to do this without swearing so add your own favourite swear word there. So the claim was restarted and they wrote to my son's psychiatrist to verify my reasons for the appeal. This letter has just been received (10 days after that conversation) and, thanks to me tipping the psychiatrist off that the form was urgent I know it's gone straight back to them backing absolutely everything I said and basically ridiculing their reasons for only paying minimum rate to my son.

We're nearly at the one year stage from the first application for DLA being sent and it's still not been sorted. DWP? As I said to me it stands for something very different.


Wednesday, 23 February 2011

Keep Buggering On

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.


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.


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.


Tuesday, 4 January 2011


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?