The Good. No one is under any illusion as to how I feel about dealing with the Department of Works and Pensions who are responsible for managing the benefits system, my frustrations and wrath have been plastered all over this blog on more than one occasion. We were told that the next stage, after they acknowledge our change of circumstances would be that we would have to account for where our money had gone since we sold our last house and buying this one. In our case that was a period of 7 years!! I have to admit I have been in a bit of a panic about it, mainly because I had no idea how we were going to do it.
We had a call from the benefits office where our 3rd attempt at registering our change of circumstances has been FINALLY acknowledged to say they had it and would be in assessing the application. No time scale given. We got another call last week and I expected them to say we were moving into the next stage ie accounting for the last 7 years spending, when she said "we've assessed your application, registered your change of circumstances and there's nothing else you need to do". Well it's not often I'm left speechless as most of you will attest to, but I was speechless. I stood there with my mouth open when Mark told me. When I got over the shock, both of the news and being rendered speechless, I just felt huge relief, that's it now, we don't have to fight the system any longer. It takes affect immediately, it's only an extra £5.00 per week but it allows us to apply to help with housing costs which will go towards paying the mortgage, that reduction goes straight to utilities bills so now I know we can keep our heads above water. It is a real load off.
The Bad. The surgeon in Birmingham got the information about the fixture in Marks back last October. We knew it would be a while before it actually happened because of the general waiting lists in the NHS, we weren't prepared for the news we got today though.
The last two weeks Mark has been ringing to find out what's happening and so far we've not been able to get any information. Mr Flints secretary has had problems getting the Theatre Mgr to get back with a date when the tools would be ready along with theatre time and a bed. The call today told us the Theatre Mgr said he can get the tools from two different places - that's it. Not that he's ordered them and allocated Theatre time, just that he can get them. It turns out we're NOT EVEN ON A WAITING LIST!! Mr Flints secretary is going to talk to him about getting us on the operating list which we thought we were already on. Mark is so frustrated, his pain levels continue to slowly get worse and now we find we're no further on.
The downright ugly. The cat had diarrhea last week and chose my bed!!
January 21, 2013
January 10, 2013
Well it's taken nearly all day but this is what I've finally found out ...... someone who shall remain nameless and not responsible for their actions or the distress they've created, sent a memo from the Dept of Work and Pensions to our local council to say Marks benefit has been terminated, they then write to us and tell us our council tax rebates have been cancelled. I ring the council office and say as far as I am aware nothing has been cancelled ...... they tell me according to their records Marks benefit is terminated as from December 17th and therefore it voids the council tax rebate, that's all they can tell me.
I ring our local Job Centre Plus who are our first port of call with anything benefit related, explain the situation, they look at their records and tell me the same thing, his benefit has been terminated, no further explanation. If we want to find out any more they will email the processing department at the Dept of Works and Pensions and someone will ring me back.
Amazingly they did so, an hour ago, to say to me that the benefit had not been terminated, the next payment will go in as normal and there was no good reason why anyone should be telling me any different. I should ring them back and tell them to check the internal system and they would see that was the case. It struck me at this point that not one of these different departments was going to talk to each other, I had to do their communications for them!!
I ring the local council back again and tell them the benefit hasn't been cancelled and they should check on their internal system and it would confirm their actions were incorrect. The person I'm speaking too doesn't have the authority to view this system and has to get someone else to do it, they'll ring me back. An hour later they do. They tell me my information is correct, the benefit hasn't been terminated and they shouldn't have sent out their letter. They'll correct their mistake straight away. I ask can I have the name of the person who sent the memo and I'm told I can't, it's automatically generated.
So in short, I'm dealing with a government department for Marks benefit that doesn't have a physical address, is manned by un named people, who are not accountable for any of their actions and who I cannot ring because they don't provide a telephone number. If I want to speak to someone I have to ring my local job centre, they send an email to said dept and someone may or may not ring me back.
I despair at what this country is coming too.
I ring our local Job Centre Plus who are our first port of call with anything benefit related, explain the situation, they look at their records and tell me the same thing, his benefit has been terminated, no further explanation. If we want to find out any more they will email the processing department at the Dept of Works and Pensions and someone will ring me back.
Amazingly they did so, an hour ago, to say to me that the benefit had not been terminated, the next payment will go in as normal and there was no good reason why anyone should be telling me any different. I should ring them back and tell them to check the internal system and they would see that was the case. It struck me at this point that not one of these different departments was going to talk to each other, I had to do their communications for them!!
I ring the local council back again and tell them the benefit hasn't been cancelled and they should check on their internal system and it would confirm their actions were incorrect. The person I'm speaking too doesn't have the authority to view this system and has to get someone else to do it, they'll ring me back. An hour later they do. They tell me my information is correct, the benefit hasn't been terminated and they shouldn't have sent out their letter. They'll correct their mistake straight away. I ask can I have the name of the person who sent the memo and I'm told I can't, it's automatically generated.
So in short, I'm dealing with a government department for Marks benefit that doesn't have a physical address, is manned by un named people, who are not accountable for any of their actions and who I cannot ring because they don't provide a telephone number. If I want to speak to someone I have to ring my local job centre, they send an email to said dept and someone may or may not ring me back.
I despair at what this country is coming too.
I better tell you about Mark now hadn't I, he's in bed again today, in too much pain to get up. He was going to go out with a friend today, however, about 9ish last night he suddenly shouted me and said he had to get out of his wheelchair and into bed, he was in agony. The weird thing is, it comes on so suddenly and for no apparent reason that we can work out. So another night of no sleep and morphine every couple of hours. He spoke to the consultants secretary, or rather her stand in because the secretary is off ill, and we're waiting for a call back with some sort of time slot for his operation. Hoping it won't be more than another couple of months.
The other day was a farce .....
Mark got up with about the normal amount of pain and decided to go out to his friends who owns a garage. He likes it there as you can all imagine and it keeps him stimulated (read awake!!) because there's stuff going on. Anyway, I got him in his car, disassembled his wheelchair and packed it in the boot. Mark turned the key ..... A BIG FAT NOTHING!! Blue language coming from inside the car, I got wheelchair out of the boot, put it back together, got Mark out of the car, he made me find tools so between us we could take the fixture on top of the battery and see what was going on, found a loose connection .... between us put it all back together again (him getting frustrated because I'm a rubbish mechanic (but the best one he has on hand!). During this I can smell Mark and it's not good, took him back inside, found carers had dressed him with a dirty bum and dirty underpants, (me swearing now) so I undress him, wash him, dress him again ....... sounds easy when I write it like that doesn't it?? Feed him lunch, put him back in his car, take wheelchair apart, pack it into boot again and see him off. Knackered then, spent the rest of the day with my head in a book denying the rest of the world existed!!
December 31, 2012
On the Eve of 2012
Twas the week before Xmas and Mark is in bed poorly again, this time with a chest infection. They take chest infections of tetraplegics very seriously because they don't have the use of abdominal or chest muscles to enable them to cough or blow their nose, so it was a week of antibiotics for Mark and a week in bed again.
He managed to get up on the 23rd for a couple of hours, then again on the 24th, looking a bit better and we managed to get out to the movies, then back to bed for him again a couple hours after we get home. Up for a few hours on Xmas day but back to bed just as xmas dinner was ready to dish up ....... turn xmas dinner down and hope he can get back up in a while to eat. Up again in about 30 mins and we eat, he's back in bed by about 9ish. Boxing day and the next day he's still in bed with pain, up for a few hours on the 28th but not for long and not looking at all well, even though he was looking forward to friends staying overnight. Not up at all on the 29th apart to go to the bathroom and have a shower in the evening. Yesterday, 30th, he was up long enough to have lunch with friends then back to bed. So that 10 days is a glimpse of what the past month has been like, when you add them up, the days in bed seriously outnumber the days up it seems and it's slowly getting worse.
Looking back over the last year, and to be honest, it seems to have flown, but I guess that's because I for one, have been so busy and haven't stopped working on the house and trying to get it a nice place to live. I think I've achieved that now, it hasn't been easy but when friends come now and see that it's nearly finished and what a transformation we've achieved, I feel quite proud of what I've managed ..... however, it's constantly overshadowed by Mark's slow decline as the year has moved on. We try to keep positive and looking forward to after he has his next operation hoping life will improve for him then. It can't come quickly enough for both of us. Although it's New Year Eve, I can't see that the early part of the New Year is going to be any better for him. It's heartbreaking. We were told it takes 2 years before you really move on with your life after such a trauma but when is that 2 years going to start?? Seems like it won't be until after his next operation whenever that might be. Constantly we feel like life, whatever shape that might take, is on hold, it has to get better soon surely.
We had to go through the process of filling in his benefit forms AGAIN and this time I posted them registered, costing nearly £7!! Our benefits rights officer has written a long letter of complaint about the way we've been treated.... do you think that will have ANY affect at all??? Can't see it myself.
I want to say a great big thanks for everyone's support over the last year, believe me I wouldn't make it through without you ...... so we're wishing you all a very Happy New Year and hope the coming year brings you all everything you wish for x.
He managed to get up on the 23rd for a couple of hours, then again on the 24th, looking a bit better and we managed to get out to the movies, then back to bed for him again a couple hours after we get home. Up for a few hours on Xmas day but back to bed just as xmas dinner was ready to dish up ....... turn xmas dinner down and hope he can get back up in a while to eat. Up again in about 30 mins and we eat, he's back in bed by about 9ish. Boxing day and the next day he's still in bed with pain, up for a few hours on the 28th but not for long and not looking at all well, even though he was looking forward to friends staying overnight. Not up at all on the 29th apart to go to the bathroom and have a shower in the evening. Yesterday, 30th, he was up long enough to have lunch with friends then back to bed. So that 10 days is a glimpse of what the past month has been like, when you add them up, the days in bed seriously outnumber the days up it seems and it's slowly getting worse.
Looking back over the last year, and to be honest, it seems to have flown, but I guess that's because I for one, have been so busy and haven't stopped working on the house and trying to get it a nice place to live. I think I've achieved that now, it hasn't been easy but when friends come now and see that it's nearly finished and what a transformation we've achieved, I feel quite proud of what I've managed ..... however, it's constantly overshadowed by Mark's slow decline as the year has moved on. We try to keep positive and looking forward to after he has his next operation hoping life will improve for him then. It can't come quickly enough for both of us. Although it's New Year Eve, I can't see that the early part of the New Year is going to be any better for him. It's heartbreaking. We were told it takes 2 years before you really move on with your life after such a trauma but when is that 2 years going to start?? Seems like it won't be until after his next operation whenever that might be. Constantly we feel like life, whatever shape that might take, is on hold, it has to get better soon surely.
We had to go through the process of filling in his benefit forms AGAIN and this time I posted them registered, costing nearly £7!! Our benefits rights officer has written a long letter of complaint about the way we've been treated.... do you think that will have ANY affect at all??? Can't see it myself.
I want to say a great big thanks for everyone's support over the last year, believe me I wouldn't make it through without you ...... so we're wishing you all a very Happy New Year and hope the coming year brings you all everything you wish for x.
December 11, 2012
How outrageous is this .....
You may or may not remember when Mark was in BRI hospital last we had real problems in that his consultant at Pinderfields was convinced all his pain problems were in his head and he needed psychological counselling. That idea was planted in the head of the consultant at BRI and he asked Mark if he was willing to speak to the psychologist. Although this was frustrating because we had been fighting this with our Pinderfields consultant for some time and that was why he was not willing to refer Mark for a second medical assessment. Anyway Mark agreed to speak to the psychologist and had a long session with her on his own and then a second session with us both there. She wrote a report and her opinion was that Mark's pain was not in his head and that in her professional opinion he should be seeking a second medical assessment. That report was sent to his consultant at Pinderfields and following that he agreed to refer Mark to Mr Flint in Birmingham. That has progressed in that Mr Flint is willing to operate but it will be months until that happens. So far so good. A struggle to get that far but we made it.
A couple of weeks ago Mark gets a call from his local Doctor (remember the psychological report was written in March of this year) because the Doctor had had a letter from Mark's consultant at Pinderfields, a letter that was badly written and confusing but the gist of it was that he was strongly suggesting Mark seek psychological help for his pain management. The Doctor was confused because a copy of the report was in his notes and he wanted to discuss with Mark how his situation may have changed since the report and how he wanted to proceed from here. To say Mark was confused was an understatement. He calmly went through the story with the Doctor again and between them they agreed to ignore the letter. I was outraged. How dare that b****y consultant start interfering again with the same argument that had already been discarded by the very expert he had insisted Mark speak to. What was the point of the damned report if he wasn't going to take any notice of it. It seems that although he wanted the psychology assessment he had no intention of taking any notice of it because it didn't back up what he wanted to hear. I was spitting tacks and said I thought Mark should email him and ask him what right he had to start demanding his local Doctor recommend him for more assessments. He hasn't even seen Mark since he came out of hospital, what an unprofessional way to deal with a patient. I have absolutely no faith in this guy and I think we should report his behaviour and insist on being moved to another consultant. Unfortunately I don't think after all the battles we've fought I have the energy to do anything about it right now.
To top that lot off we've just found out that the paperwork we handed in and got a receipt for to get Marks benefits changed can't be found anywhere in the system and we have to start again ..... aaaaarrrrrrgggggghhhhh!!!!!!
A couple of weeks ago Mark gets a call from his local Doctor (remember the psychological report was written in March of this year) because the Doctor had had a letter from Mark's consultant at Pinderfields, a letter that was badly written and confusing but the gist of it was that he was strongly suggesting Mark seek psychological help for his pain management. The Doctor was confused because a copy of the report was in his notes and he wanted to discuss with Mark how his situation may have changed since the report and how he wanted to proceed from here. To say Mark was confused was an understatement. He calmly went through the story with the Doctor again and between them they agreed to ignore the letter. I was outraged. How dare that b****y consultant start interfering again with the same argument that had already been discarded by the very expert he had insisted Mark speak to. What was the point of the damned report if he wasn't going to take any notice of it. It seems that although he wanted the psychology assessment he had no intention of taking any notice of it because it didn't back up what he wanted to hear. I was spitting tacks and said I thought Mark should email him and ask him what right he had to start demanding his local Doctor recommend him for more assessments. He hasn't even seen Mark since he came out of hospital, what an unprofessional way to deal with a patient. I have absolutely no faith in this guy and I think we should report his behaviour and insist on being moved to another consultant. Unfortunately I don't think after all the battles we've fought I have the energy to do anything about it right now.
To top that lot off we've just found out that the paperwork we handed in and got a receipt for to get Marks benefits changed can't be found anywhere in the system and we have to start again ..... aaaaarrrrrrgggggghhhhh!!!!!!
November 26, 2012
How is day to day life shaping up?
It took Mark a week to get over his torture in hospital, and torture is really the only way to describe what he went through. It became clear just how much it took out of him by how long it took him to get back to normal, well as normal as he gets! I did think after the first night home he was OK but as the days went on and he could hardly stay awake day and night and didn't get out of bed for days I had to revise my view.
He's OK now but it took him a week to get over it and now to be perfectly honest there's not a lot of excitement in the Wycherley household. Some might say that after the last 18 months that's a good thing and in lots of ways it is. However, as we try and create some normality along with that comes the boredom that can be everyday life if it's severely restricted. And restricted it is. We were watching telly last night and the advert for the new Bond movie came on. Not for the first time I said to Mark I would really like to go see that, the answer, a non committal yea. The problem is, it's such a major expedition to go anywhere and do anything, we never know if we can actually go until it comes time to leave and whether we leave depends on how Mark is feeling at the time. The number of times we plan to do something then cancel it again because he either can't get out of bed or is in too much pain I've lost track of.
So in addition to keeping busy trying to get through the decorating, I'm also using time to help a friend who has a crazy plan. Some of you know Les Carvall and most of those who do will be familiar with his crazy plan, those of you who don't, he and three of his buddies, all in their 70's are going to drive around the world to raise money for charity. I've been dusting off my computer skills - they have been even more rusty than I thought - and have helped him put a new website together ... www.heavencanwaitimbusy.com ... a blog ... and a facebook page. I need some LIKES on the facebook page so if you have a minute to spare click on it and click LIKE for me .... TA. If I get some likes it will start to make all the work feel worthwhile. (Thanks for Les Waddy for pointing me in the right direction with Facebook when I had a complete brain fade).
Next installment on THE CAT .... the cat decided he would speak to me on a 'barely need to, to get fed' basis and this went on for a few weeks. He goes out at night, I've got to say I feel a bit mean putting him out when the weather is foul, but he's always done it so we've carried on. When he came in in the morning he went straight to his bowl, ate, leged it back to his sanctuary, the bedroom where first lived and stayed there till evening when he wanted to be fed again. So one day to shut him out of that bedroom and see if he would become part of our gang - why bother I hear you shout, he's a cat and doesn't care about your gang!! Well you were all wrong ... more next week.
He's OK now but it took him a week to get over it and now to be perfectly honest there's not a lot of excitement in the Wycherley household. Some might say that after the last 18 months that's a good thing and in lots of ways it is. However, as we try and create some normality along with that comes the boredom that can be everyday life if it's severely restricted. And restricted it is. We were watching telly last night and the advert for the new Bond movie came on. Not for the first time I said to Mark I would really like to go see that, the answer, a non committal yea. The problem is, it's such a major expedition to go anywhere and do anything, we never know if we can actually go until it comes time to leave and whether we leave depends on how Mark is feeling at the time. The number of times we plan to do something then cancel it again because he either can't get out of bed or is in too much pain I've lost track of.
So in addition to keeping busy trying to get through the decorating, I'm also using time to help a friend who has a crazy plan. Some of you know Les Carvall and most of those who do will be familiar with his crazy plan, those of you who don't, he and three of his buddies, all in their 70's are going to drive around the world to raise money for charity. I've been dusting off my computer skills - they have been even more rusty than I thought - and have helped him put a new website together ... www.heavencanwaitimbusy.com ... a blog ... and a facebook page. I need some LIKES on the facebook page so if you have a minute to spare click on it and click LIKE for me .... TA. If I get some likes it will start to make all the work feel worthwhile. (Thanks for Les Waddy for pointing me in the right direction with Facebook when I had a complete brain fade).
Next installment on THE CAT .... the cat decided he would speak to me on a 'barely need to, to get fed' basis and this went on for a few weeks. He goes out at night, I've got to say I feel a bit mean putting him out when the weather is foul, but he's always done it so we've carried on. When he came in in the morning he went straight to his bowl, ate, leged it back to his sanctuary, the bedroom where first lived and stayed there till evening when he wanted to be fed again. So one day to shut him out of that bedroom and see if he would become part of our gang - why bother I hear you shout, he's a cat and doesn't care about your gang!! Well you were all wrong ... more next week.
November 15, 2012
Marks holds the record .....
..... for needing the most 'clean you out fluid' of anyone they've dealt with so far in BRI. And even then he still wasn't completely cleared out. What a claim to fame!!
He was supposed to have a colonoscopy - camera job - but he missed his slot because they couldn't get him cleaned out in time so they decided to do a CTC instead. According to one of the nurses, it's a better and safer proceedure, and you don't have to be completely empty to do it. The result is a 3D rendering of the intestines but they don't use it as a matter of course because it's too expensive. So a 24 hour stay turned into a 48 hour stay and NO food all that time. The other downside of all this flushing liquid was that his drugs were also being flushed out too quickly, he was almost on withdrawal, having little or no benefit from them. Not a pleasant experience for the poor bloke.
He's home tonight and although he's worn out with having so little sleep over the last 48 hours doesn't look too much worse for the experience. You would think he should look a little thinner but sadly no.
The cat is beginning to join our gang. When he first came to live with us, about 5 months ago, he disappeared under the bed in the room Mike and Eve were in and didn't come out for about a fortnight. Over the next couple of weeks he slowly began to sleep on the bed rather than under it and after a month had his food moved to the kitchen. He had nothing to do with anyone really other than Mike and Eve, but when they left he decided he better start talking to me as I was the only one left who would feed him .... more about him next time if there isn't anything more interesting to chat about.
He was supposed to have a colonoscopy - camera job - but he missed his slot because they couldn't get him cleaned out in time so they decided to do a CTC instead. According to one of the nurses, it's a better and safer proceedure, and you don't have to be completely empty to do it. The result is a 3D rendering of the intestines but they don't use it as a matter of course because it's too expensive. So a 24 hour stay turned into a 48 hour stay and NO food all that time. The other downside of all this flushing liquid was that his drugs were also being flushed out too quickly, he was almost on withdrawal, having little or no benefit from them. Not a pleasant experience for the poor bloke.
He's home tonight and although he's worn out with having so little sleep over the last 48 hours doesn't look too much worse for the experience. You would think he should look a little thinner but sadly no.
The cat is beginning to join our gang. When he first came to live with us, about 5 months ago, he disappeared under the bed in the room Mike and Eve were in and didn't come out for about a fortnight. Over the next couple of weeks he slowly began to sleep on the bed rather than under it and after a month had his food moved to the kitchen. He had nothing to do with anyone really other than Mike and Eve, but when they left he decided he better start talking to me as I was the only one left who would feed him .... more about him next time if there isn't anything more interesting to chat about.
November 11, 2012
Another three days in bed
I don't know where Mark picks these things up from, but I think he's had another bug. Came home from his friends on Thursday night, went straight to bed and had been there until today (Sunday). Apart from the severe pain he normally has, he's felt completely worn out and slept continually. Oh well, he'll be rested up for his next stay in hospital, this Tuesday. Only an overnight this time. They did a blood test ages ago and he was severely anemic so they put him on iron tablets and folic acid, like he's not taking enough drugs already!! They also booked him in for a colonoscopy to make sure he's not bleeding internally. It never ends for the poor guy. And that's why he's going into hospital this Tuesday.
Apart from that there's not much going on in our lives, I'm STILL painting, every time I think I can see the light at the end of the tunnel, I see loads more, it's never ending!!
The cat is fine, by the way, he does have a name it's Bods, short for Boddingtons. He still doesn't have a care in the world. He's started following me round the house in the mornings after he has come in and had his breakfast, shouting at me. What he's got to shout about heaven only knows!!
Apart from that there's not much going on in our lives, I'm STILL painting, every time I think I can see the light at the end of the tunnel, I see loads more, it's never ending!!
The cat is fine, by the way, he does have a name it's Bods, short for Boddingtons. He still doesn't have a care in the world. He's started following me round the house in the mornings after he has come in and had his breakfast, shouting at me. What he's got to shout about heaven only knows!!
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