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Feather

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Re: Kitkat's KK Blog

Post by Feather on Sun 19 Feb 2012 - 20:44

As you say--what a woman! It must be good to know she's rooting for you. I've forgotten who she is. Is she at that place where you go once a month?
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Re: Kitkat's KK Blog

Post by Kitkat on Sun 19 Feb 2012 - 20:53

Feather wrote:As you say--what a woman! It must be good to know she's rooting for you. I've forgotten who she is.

She's the lady in my "synchronicity story", posted a bit back in this thread.


Is she at that place where you go once a month?
Maggie's Cancer Centre? No, I've had to miss out of those meetings for a while now - since the back got worse ... hell of a journey to get there ... can't join in with the exercise session ... I do miss them.
They are actually based at Charing Cross Hospital where I have my appointment with the neurosurgeon on 2nd March, so hopefully will get a chance to pop in while there and have a chat and a cuppa with them after I've seen the consultant.
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Re: Kitkat's KK Blog

Post by Kitkat on Sun 19 Feb 2012 - 21:06

Coincidentally, in the News today:

http://www.bbc.co.uk/news/uk-politics-17087724

New disability tests 'must prove fair and accurate'

The government must ensure new welfare assessments planned for disabled people are "accurate and fair" before they are rolled out nationally, MPs have said.

The Work and Pensions Select Committee said the tests for the new Personal Independence Payment, coming in from 2013, could cut funds people relied on.

The assessments risk being too narrow and missing wider factors, the MPs say.

The government says "a new face-to-face assessment and regular reviews" will ensure "the right levels of support".

The committee said there were "high levels of anxiety" among claimants of Disability Living Allowance (DLA), about its replacement with the new PIP benefit for those of working age.
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Re: Kitkat's KK Blog

Post by Kitkat on Tue 28 Feb 2012 - 12:00

Soooo much pain today. I can barely sit on the chair here. Want to go and lie down and rest from the hurt but lying down is worse. Cat knows there is something wrong, won't leave my side for a second and keeps staring at me with that soppy look - as if to say "I wish I could do something to make it all better". Can't stop myself from outbursts of crying. I feel so terribly alone and abandoned in my plight. Seems there is no end to this and I can't look any further than the in-between moments of solace when the painkillers kick in.
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Re: Kitkat's KK Blog

Post by Feather on Wed 29 Feb 2012 - 9:38

It saddens me to hear that you are still suffering such awful pain, kk. I know the "alone" feeling well but isn't Viv in touch with you on a regular basis? If I lived in London instead of so far away, I would try my best to help you. I know that's easy to say but I mean every word of it. When and what is the next stage of your treatment? It's high time they took away that pain. The NHS must be in a shocking state for you to be waiting so very long for relief. You have the patience of a saint,kk. xxx


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Re: Kitkat's KK Blog

Post by Kitkat on Wed 29 Feb 2012 - 11:11

I meant as far as professionals and services etc are concerned (the system). Yes, my friend Viv's help is priceless - she insists on being with me for hospital visits etc and helps greatly with other things. My friend John also - chauffering me around and 'pestering' Angie to hurry things up with negotiations with the various authorities etc. I got a call from him yesterday asking if I'd heard anything from Angie. I haven't done since my meeting with her last Wednesday. I have asked her to copy any progress to me by email (my preferred way of communication, as means I can keep copies of progress for the record). John was annoyed because they had apparently made arrangements for her to go round to his place on Sunday, he was cooking. She never turned up and he's heard nothing from her since, despite phoning several times and leaving messages (her phone is just going straight to voicemail).
I reminded him that she is not long out of hospital herself (after a life-threatening ordeal - with the blood transfusion and all that). Look how she was emailing me from her hospital bed (!) 11.30 at night - telling me not to worry about the setback with the 'Assessment' and that room is open for further negotiation etc. All that was at the weekend and when I saw her on the Wednesday she was whizzing around helping people, taking and making numerous phone-calls etc. The other guy that she saw that day now has all his problems solved (due to her). I did mention to her that day how tired she seemed (exhausted even) and that she should take care to give some time to looking after herself at this time, instead of worrying about looking after other people's needs all the time.
I emailed her after John's call, to ask if everything is okay with her and asked that she gets the chance to give either one of us a shout (phone or email) just to let us know that she is okay, and also to remind her that there are many around who care and prepared to offer help to her in any way they can - me being top of the list there. Neither of us have heard anything back.

She did say that when(IF) the face-to-face DLA assessment is arranged, i.e. someone come to my home to do the assessment properly and see what my immediate needs are - that she could be in attendance also if I have wheelchair access here. That would be an enormous help, and I did tell her that shouldn't be a problem as I live on the ground floor. However, when I came home I realised that although on the ground floor, that's not really the case. There is a little step up onto the path as you come in the gate, then another step up onto the porch. There is access around the side to get to the back door but a sort of a rise (not exactly a step) there also coming in the door. Viv was around here on Sunday, and suggested that perhaps some kind of block of wood ramp or something similar could be sorted to overcome that problem. Also, Viv has requested that she be there at any Assessment.

The long-awaited Neurosurgeon consultant appointment is on Friday (2nd March). It's at Charing Cross Hospital - where the Maggies Cancer Care place is located, so I hope to pop in there afterwards for a cup of coffee and a chat. Not been able to make the last few monthly meet-ups there with the various survival groups. I do miss those meetings.
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Re: Kitkat's KK Blog

Post by Kitkat on Fri 2 Mar 2012 - 9:32

The 'big day' today :!: Thought this day would never arrive ... THE neurosurgery appointment.
Still no word from Angie ... so much for the arranged transport to the hospital Rolling Eyes ... but what the heck ... it's actually a good day today. Actually, the last few days haven't been so bad at all, not racked with pain trying to get out of bed or anything like that. In fact, at the moment wouldn't even know anything was wrong - apart from when I go to cough mebbe or take a really deep breath ... times like that the pain hits. Not sure why, but I'm actually quite nervous about today. Viv's coming over this morning, she's coming with me to the hospital. I'll be driving up there. Appointment's at 1.30, but I'll be leaving here about noon, what with the Friday London traffic etc.
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Re: Kitkat's KK Blog

Post by Feather on Fri 2 Mar 2012 - 13:26

You will be at the hospital now, kk. Thank goodness for Viv, eh? Moral support makes such a difference to how you feel, I'm sure.
I'm waiting to hear how you get on. Whatever the outcome, I hope they are able to help you. Do you have to wait yet again for results?


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Re: Kitkat's KK Blog

Post by Kitkat on Fri 2 Mar 2012 - 19:25

Only just back in the door from hospital now. Been a horrendous day right from the start.
Haven't the heart to go into it all just now. Details later. Prescribed morphine tablets now.
Viv's in the kitchen making tea. Soap sandwich in a few mins (Corrie-Eastenders-Corrie again).
Laters ..............
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Re: Kitkat's KK Blog

Post by Feather on Fri 2 Mar 2012 - 21:18

Be very careful with those morphine tablets, kk. I'm shocked you were given them. They can be dangerous. I hope they're not a high strength.


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Re: Kitkat's KK Blog

Post by Kitkat on Fri 2 Mar 2012 - 23:05

When I read your post, Feather, I went to check on the dosage (had already taken 2 of them together with 2 others prescribed - got the prescription from the Pharmacy at the hospital before I left there. You know how you wait ages in these places for your prescription to be given - have to pull a number like in the DSS office and wait till your number comes up. Well from before I even left the house this morning I had these awful gripping vice-like pains. I know what triggered it - washed my hair this morning - usually have to pick a pain-free time to do that, it's a huge job these days especially as my hair is really long now, down almost to my waist, so it's quite a long time bending over the bath using the shower head. Anyway, that was absolutely no problem for me this morning and I was actually thinking I'm having a good day today. No problem getting out of bed either. BUT - although no problem while actually washing my hair, it's afterwards that it affected me. Just before Viv arrived I was screaming out with the pain and struggling trying to get up from where I had sat down just for a moment. The stick wasn't near to hand, and even if it was wouldn't have helped, it was one of those situations where I just had to bear it until it went away. Couldn't move. That was me set for the day. Drove up to Charing Cross and had a dreadful time trying to get out of the car, same problem, then bit of a walk into the hospital. Turned out all appointments delayed for one hour (some kind of emergency at the hospital). Had to stand up for the whole of that wait because if I sat down would have the same problem getting up again. Pain was fierce all the time, slightest little twitch and the grips would come again. Was long time in with the consultant also. The prescription was for different painkillers altogether to take now. 3 different items: Tramadol, Diclofenac and Morphine (just one week's supply of this - and ONLY when absolutely NEEDED). When went to get the prescription from the Pharmacy, I couldn't even answer the questions that she was asking (and the explanations of what they were etc), the pains were so severe while standing there. Said whatever they are I need to take some right NOW. So she got me some water and took the tablets out for me to take - said take 2 of these and 2 of these.
(Sorry if rambling a bit ... blame the tablets, lol)
Anyway, when I read your post, I thought OMG, the pharmacist gave me 2 of these morphine tablets to take... went to check the dosage level - only to find that the Morphine is actually in the form of an oral solution, not tablets - was the 3rd item on the prescription, and not what I had taken at the hospital. Two 5ml spoonfuls every 4 hours when required.

The neurosurgeon had given me a quickie sort of examination (just while sitting), hit me with a hammer in a few places etc, reflexes and such. The nerves are not affected at all. Saw the photos from the MRI scans and she went through it all with me. Not discitus - some other name, begins with 'M'. to do with disc space and muscle pressure or something. Surgery would be an absolutely, totally last resort. What I have to do for the immediate is physiotherapy and pain management at the pain management clinic. But that has to be arranged through my GP. Not her department. I am actually discharged from there for now. Will only be seeing her again if the other proposed treatment/therapy doesn't work - as she said, last resort. She will be doing a full report - which will be sent to my GP (probably about 1 to 2 weeks' time).
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Re: Kitkat's KK Blog

Post by Feather on Sat 3 Mar 2012 - 11:07

OMG, kk, what a day you had! What can I say? It's hard to see a bright side when you are in such pain, but there is a bright side--it's NOT cancer. Keep dwelling on that and try to look forward to the time when the agony has been sorted. I have heard of this condition before. I think it's quite common actually. My son Leigh's partner's brother had 2 operations for it. The 1st one wasn't a success but the 2nd one was. I think what gives the pain is that the cushioning between the discs has become depleted and you have bone rubbing against bone. The reason an operation is the last resort is that the problem is so near the spinal cord, that the slightest mistake could leave the patient worse off than before. Still, there are hundreds of these ops being done all the time. There must be as people get older with all the health concerns that accompany the passage of time. Ooops!!--I don't mean you are old, kk, but time marches on for us all.
I hope the phisiotherapy helps the pain so that the quality of your life improves dramatically but, if not, then an op should do the trick.
My thoughts are with you, kk.xxx.


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Re: Kitkat's KK Blog

Post by Kitkat on Sat 3 Mar 2012 - 12:04

Yes, it has now been officially confirmed that this problem is not connected to any cancer spread. Some consolation I guess. She mentioned severe bruising and pressure, depleted something or other, and this is what's causing the pain. Disc degeneration was mentioned also. I was so relieved to hear that surgery is not in the offing, but on the other hand there doesn't seem to be anything definite on offer to "fix" the problem, just as I see it indefinite measures to "ease" it.
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Re: Kitkat's KK Blog

Post by Jamboree on Wed 7 Mar 2012 - 8:40

Only just read your story here Kitkat. pale

You deserve a bit of a break. Hope you get it soon. I love you
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Re: Kitkat's KK Blog

Post by Kitkat on Wed 7 Mar 2012 - 13:07

I do agree, Jamboree sunny ... but not holding my breath.

I did as suggested last Friday when I phoned for appt with my GP (and the earliest appt was 20th March - which incidentally is the same day I have appointment with my Oncologist) - and phoned this morning at 8:45 to arrange see her at the end of her extended surgery today. Nope! They told me all booked up today, no slot - and the nearest appt to see her would be on 26th March!!! They could fit me in today with another doc in the surgery, one that I've never seen before ... absolutely pointless doing so in the circumstances. So, the alternative was to come in at 10 o'clock and join the waiting queue to see the Emergency doc (5 minutes slot only), and only then if it is an absolutely critical medical emergency. I said it was and so appt was made. After a while, I thought about it ... got more and more annoyed, so I phoned back with the intention of insisting that I see my own GP at the end of extended surgery. They said again, NO slot - it's emergency doc or wait till 26th March. Who is taking the emergency surgery today? ... my own GP !!!!!!!
AND ... when I got there, there were only TWO other people waiting ... AND they were booked in AFTER me.

Whatever about the morphine, she not happy about my being prescribed Diclofenac. Said she would never have prescribed that for me. Apparently there are quite a few "issues" with this particular drug. It all seems very wrong. For instance, along with that, I've been prescribed what I was told was ONE WEEK's supply of morphine sulphate (to take only when needed). Yet, on the bottles (two bottles) it says 2 5ml spoonfuls to be taken every 4 hours (week's supply). I have only taken it once since Friday, that was on the Saturday when it was really, really needed, and even then I just took the one spoonful - and bliss ... it really worked and it worked fast, almost instantly, so it's nice to know it's there and something that really does the job, but I certainly won't be in a hurry to take it on a regular basis, or even again unless I am really desperate with pain like I was on Friday and Saturday.

GP can't do anything about referral for physiotherapy or pain management clinic until she has the official report from the Neurosurgeon. That's gonna be another possible 2 weeks.
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Re: Kitkat's KK Blog

Post by Feather on Wed 7 Mar 2012 - 21:47

Here you go again---wait, wait, wait. At least things are progressing, however slowly. The best news is it's not cancer and you CAN take a morphine tablet for the worst bouts of pain. xxx


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Re: Kitkat's KK Blog

Post by Kitkat on Thu 8 Mar 2012 - 11:53

Spoke too soon. Yesterday I had to take another dose (well, half a dose as in one teaspoon, not 2). Slept like a baby. Not long up as it happens and today so far it's just been sheer agony moving around the place. Not the jarring and locking pains but a constant sheer burning sort of pain. Finding it extremely uncomfortable even just sitting on the chair here. Managed to feed the cat with the help of Mister Grabbit. I'm just putting off for as long as possibly bearable having to dip into the magic morphine again. Someone coming around this afternoon to check out a leak in my sitting room ceiling (well, not a pouring leak as such, more of a drip. There's a sort of a T-mark on the ceiling - just a bit away from the light fitting (thank goodness!) and there's a line of water drops along this mark and every now and then the one at the end just drips down to the floor. Looks like could be something to do with a pipe problem in the flat upstairs from me. I'm on the ground floor of a 3-storey house. Between 1 and 5 is all they can give me for these guys to come ... I don't want to be falling asleep when they're here. At least it doesn't mean having to take a half day off work to be here when they come.
I've taken the other prescribed medication and hoping that'll stave it off for a bit.
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Re: Kitkat's KK Blog

Post by Feather on Thu 8 Mar 2012 - 12:06

Wish I could wave a magic wand for you. Hugs.


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Re: Kitkat's KK Blog

Post by Kitkat on Thu 8 Mar 2012 - 14:21

The plumbers have been and gone now. The problem has been pinpointed to a leaking washing machine in the flat above me.
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Re: Kitkat's KK Blog

Post by Kitkat on Sun 11 Mar 2012 - 23:46

I've just had a horrible incident. Really horrible. Had a half dose of morphine this morning - along with the Tramadol tablets dose. Had already decided not to take any more of the Diclofenac after what my GP had said (controversial issues with it?) She prescribed more of the Tramadol...
Anyway, was meeting friends for lunch today. Set the alarm early as was hoping to wash my hair before setting off and after the last incident there thought I'd leave plenty of time afterwards in case it triggered the same problem as that awful day of my hospital appointment. Same thing ... got out of bed okay, but when I went to test bend just a little over the bath, twinges told me it wasn't a good time. So instead had some breakfast, took tablets and went back to bed. Actually slept a full 4 hours and only woke up with the phone ringing. Took some Tramadol after lunch and couple of hours later set off to drive back home. Getting sitting in car was a bit slow and painful but I sat for a while before driving off and just went slowly over the "traffic calmers" etc. Getting out was really bad but I thought well I can take more tablets when I get inside. I was actually fine when got inside though and of course need to take any of the medications with or just after food. Had such a huge lunch couldn't face even a slice of bread at that stage so thought I'll leave it for a while.

Was fine after that, sitting for a long time ... had letters to write and filing and stuff to sort out ... when suddenly sitting became extremely uncomfortable which reminded me should take some medication. Few vice-like grips when I went to get up out of the chair. Was going to go for the morphine as it helps with sleep also. Went very slowly out to the kitchen was going to make a sandwich to go with it. Had a handful of chocolate raisins in the meantime and one dropped on the floor. Thought I'd better pick it up now because Pepsi might think it's a treat and go to eat it - but then realised I'd left Mister Grabbit in the car. So, bent down very slowly with walking stick in one hand and oooooooooooh just had my hand almost there when the WORST EVER crippling pain shot through me. Felt like it was in a different place than ever before, literally just at the base of my spine. I just couldn't move. Up, down, sideways - the tiniest little twitch was hell. I could feel sort of shuddering going up my spine and my legs were shuddering also with every shoot. Waiting for it to die down and go away (like I do with other times) it just wasn't happening! The morphine was just an arm's length away but couldn't move to get at it. My phone was in my pocket but couldn't make any sort of movement to get at it. That happened at 10 o'clock. It was gone half 10 by the time I could make any move without screaming with the pain. Took the full dose of morphine this time - which normally would take effect straight away ... but I can still feel it when I make certain movements, although obviously not quite so sharp.
I buzzed the flat upstairs and one of the girls went round to the car for me to bring Mister Grabbit in, as I can't go through the night without it. I park the car round on a little side road, not right outside the house because it's a very busy main road traffic-wise and I take so long to get in/out of the car which means the door is wide open onto the road for a long time. Too dangerous. Viv is coming over tomorrow, but I really don't think I could wait that long. We're going into a One-Stop-Shop not too far from me to try and sort out stuff like sickness benefit etc and a whole load of other things, so hopefully will get something in progress there tomorrow. It's one of these places where you take a number and wait to be seen. No appointment necessary. Never been there before. Glad Viv's coming with me. (She insisted).
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Re: Kitkat's KK Blog

Post by Feather on Tue 13 Mar 2012 - 12:56

My backache pales into insignificance when I think what you are having to go through. It must be alarming for you living alone with your condition. You'll need to keep your mobile about your person at all times. I know I was glad of it the time I accidentally locked myself out of the house. Leigh had to come out of town to let me in and there was snow on the ground. I didn't even have on a coat as I'd just popped out to feed the birds. I stood and shivered for about half an hour and my socks and slippers were dripping wet. No harm was done butthank goodness for my phone.

I hope it's not long till you can be rid of your pain. xxx


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Re: Kitkat's KK Blog

Post by Kitkat on Fri 16 Mar 2012 - 10:05

It's exactly two weeks now since the neurology appointment. Phoned my GP this morning to see if the Report is with her yet. No, still awaiting.
GP cannot make the recommended referral for physiotherapy or pain management clinic until the official medical report is with her.
Just have to keep phoning every day to see if it's arrived.
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Re: Kitkat's KK Blog

Post by Kitkat on Mon 19 Mar 2012 - 13:30

AND SO THE FLAMIN' SAGA CONTINUES ............

I've just spent over an hour on the phone trying to track down this blasted medical report.
I have an appointment with Oncologist at Central Middlesex Hospital tomorrow and he is relying on this report. My employers are on tenterhooks waiting for it, and not to mention that my GP cannot make the recommended referrals until the official report is with her.
GP hasn't received it yet ... they suggested I phone Charing Cross Hospital where the appointment was to speak to the Neurosurgeon's secretary. FIVE attempts at getting through to the right department there ... and it turns out that her secretary is based at St Mary's Hospital in Paddington! Phoned there and it's an answerphone ... leave your number, short message and someone will call you back ..............

.............

and to top it all, my second Mister Grabbit has broken, the spring's gone on it.

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Re: Kitkat's KK Blog

Post by Kitkat on Wed 21 Mar 2012 - 15:05

I have been in tears all morning. Part pain. Part frustration. No-one can have anything near a full understanding as to the extent of the reasons for my tears. Extremely bad day yesterday, which carried on right through the night.

Still no medical report. I managed to get through to the nuerosurgeon's secretary yesterday (nobody had called me back after my answer-machine message). She confirmed that the report had been posted to my GP on Friday (16th), sent by 2nd class post.

On Monday I managed to wash my hair. It was exactly 17 days since my last attempt (which was on the morning of my appointment at Charing Cross and was the incident that triggered off one of the worst elongated periods of pain experienced so far).

Had an appointment with my oncologist yesterday at Central Middx Hospital. Had to wait quite a while outside the office before going in - turned out the reason for the delay was that he had been reading the very long email I had sent to Charing Cross Hospital ahead of my appointment with the neurosurgeon - to be placed before her giving brief collated details of everything leading up to that appointment and the reason for my referral there - and also the reason for the request (by the Oncologist) to have the appointment brought forward. The appointment was not brought forward - and as it turned out, I did not see that neurosurgeon, but someone else filling in for her on that day. That person was not aware of any email. It is that person who changed my medication (GP to review) and is compiling the medical report (which has not reached my GP yet) recommending physiotherapy and pain management clinic course.

The only reason that email is now on my file is because at my appointment with the Gynaecology Surgeon - the person who carried out the Hysteroscopy operation (again someone else filling in for him), I brought a copy of the email with me and asked that it be put on my file.

Oncologist is appalled at all that I have been going through and the amount of "waiting" time involved, while all that time I am in pain and progressively moreso as each day passes. My appointment yesterday was fixed on the understanding that the neurosurgery report would be to hand. It is not, and he had not received the report either. Had to rely on my verbal account of what the neurosurgeon had said. In his opinion, for my own sanity apart from anything else, it is imperative that the referrals are made ASAP for physio and pain management. He cannot understand why a telephone call could not have been made from GP to Neurosurgery asking for the report to be faxed over. He also mentioned his concern about the possible infection which doesn't seem to have been mentioned and wonders if perhaps an antibiotic or something should not have been recommended.

He too was surprised about the morphine prescribed, but agrees that in the circumstances it is my saving grace for now at least, if only in the short term. With regards to my cancer situation (which of course is his speciality and the reasons why I see him), he said that the cancer is the very least of my worries right now. I was unable to lie flat on my back for my examination by him. A mammagram has been arranged for some time in April. (That in itself may proved difficult, knowing the contorted positions one has to get into - and stay in, while the machine takes the photos. Even under normal circumstances it's quite a painful experience). He said as soon as I have the mammagram I am to phone his secretary (Macmillan Nurse) who will let me know the results straight away.

I phoned my GP reception at 11 o'clock this morning to find out if they are yet in receipt of the Neurosurgery Report. They are not. Asked to speak to my GP and was told that she is in surgery, leave my number and she will ring me back. So far she has not done so.

I then phoned the neurosurgeon's secretary (who is based at St Mary's Hospital) and asked her to fax through a copy of the Report to my GP, which she said she would do straight away.

At time of writing it is now 3 o'clock and I am still waiting to hear back from GP.
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Re: Kitkat's KK Blog

Post by Kitkat on Wed 21 Mar 2012 - 18:30

Later:
My GP did phone back me later and confirmed that the medical report had still not arrived at the Surgery!

I told her that I had spoken to the Neurologist's secretary earlier on in the morning who had confirmed that she would fax it through.

GP said even when the report arrives you do realise that there is nothing I can actually do. It is up to the specialists. I told her of my appointment with Oncologist (specialist) yesterday, of his thoughts on the matter, and the fact that because of the pain situation he was unable to examine me fully re the regular breast cancer check-up - and also reminded her that the referrals ARE up to her (GP), as the Neurologist (specialist) had said that the recommended referrals must come from my GP - as that specialist has now discharged me back to my GP. (The reason for that is something to do with money management through the different departments).

She said as soon as she does get sight of the report she will get the ball rolling - and will phone me to let me know when she has done so.

I also requested that she let me have a copy of the Report for my own records.
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Re: Kitkat's KK Blog

Post by lar-lar on Thu 22 Mar 2012 - 0:16

Oh gosh! This is awful and I'm feeling for you. Surely not much longer now..
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Re: Kitkat's KK Blog

Post by Kitkat on Tue 27 Mar 2012 - 0:54

At long last I now have a copy of the long-awaited Report following my appointment with the Neurosurgeon on 2nd March. (Typed up on 14th March and received at my GP's on 21st March by fax - and that only because I kept pestering and chasing up everyone involved). I have transcribed up a copy so that it can be included here in my diarised records.
Spoiler:
This [#?* pirat ] year old right handed legal secretary was reviewed by myself in Miss Arnold's Outpatients Clinic. This patient has had lumbar back pain for the last six to seven months. This was initially intermittent following a hysteroscopy which has now worsened and is now constant. There is occasional radiation to the lateral thigh, but the pain over the lateral thigh is more of a pressure and never goes beyond this point. She is unable to mobilise due to the pain and is now requiring one stick to assist her. She is severely disabled by the pain and is unable to lie and sleep at night due to the pain. The pain appears to be worse when lying flat. This patient has been investigated under the care of Dr Lowdell for her increasing lumbar back pain. This patient has a past medical history of malignant phyllodes tumour in the right breast in 2004. Left breast cancer with wide local excision. She also suffers from hypertension. She is currently on Co-drydramol, Ibuprofen and vitamin D supplement. She is mobilising with one stick, and is a smoker of four to five a day.

On examination today, the patient appeared in severe amount of pain, nearly in tears. She is walking with an antalgic gait and the examination was difficult as she would not lie on the couch for examination. On examination of the lower limbs, she had normal tone with no clonus. Power was globally 5/5 throughout with intact reflex. Sensation was normal throughout.

MRI which has been uploaded to our PAC system shows modic type 2 changes over the L4/L5 vertebrae with mild disc bulges at L4/L5. There is no nerve root compression. She also appears to have facet joint disease as well as very small paraspinal musculature. I have explained the MRI findings to the patient herself today and explained and reassured her that this is not spinal metastases, but changes consistent with chronic degenerative disc disease. I have explained to her that spinal fusion may be of benefit, but should only be used as a last resort. I also strongly advised her that spinal fusion would not be an option unless she has been reviewed by pain clinic and under pain management for one year.

Since the patient was in considerable pain today, I have changed her analgesia to include Diclofenac instead of Ibuprofen and added in Tramadol and Oramorph only for one week prescription. I would be very grateful if you could review this in one week.

I would also be very grateful if you could refer this patient for physiotherapy to improve her core muscle strength and referral to local Pain Clinic.

I have discharged this patient from follow-up, but if pain management were to fail, we would be pleased to see her again.

I understand my GP has now made the necessary referrals and it's now just a case of another wait to see what happens there. At least finally things are starting to move, albeit slowly...
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Re: Kitkat's KK Blog

Post by Umberto Cocopop on Tue 27 Mar 2012 - 17:47

KitKat wrote:This [#?* pirat ] year old...

You seem to have overwritten three digits there.

A clue to your minimum age! giggle

As for the rest of it - it's the knacker's yard for you, me dear!
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Re: Kitkat's KK Blog

Post by Kitkat on Wed 28 Mar 2012 - 16:16

Umberto Cocopop wrote:
KitKat wrote:This [#?* pirat ] year old...

You seem to have overwritten three digits there.

A clue to your minimum age!
That's actually my IQ rating that's covered up. rabbit tongue


Umberto Cocopop wrote:As for the rest of it - it's the knacker's yard for you, me dear!
I think I'm at the gate (on the outside) but not quite ready to go inside yet ...
Just come in the post today the package for application for DLA (Disabled Living Allowance).
A thick 40-page form of questions to fill in. Shocked with a separate accompanying form of Notes explaining the questions. The Notes form itself is 14 pages long! Well that's my activity for the rest of the day sorted.

Haven't had much chance to come on the computer over the last few days.
Yesterday my friend managed to lock herself out of her own flat - only intended to go across the road to get some ciggies ... and as soon as she shut the door she realised she hadn't got the key with her. Preoccupied cos she had just had a widescreen tv delivered and was still in the middle of the process of tuning it in. Long story ... but to cut it short, luckily she had her phone on her... (and purse) - but that's all. This happened about midday ... Someone tried the window for her but that wouldn't open far enough ... Eventually got the number of a locksmith some hours later who was coming out ... (the cheapest she could find was £100 !!) .. waiting, waiting ... then gets a call from him saying he was broken down and was waiting for the RAC to come .... more waiting ... I had already said to her to call a cab and come over to my place ... if locksmith didn't come she had already been down the Police Station who said they would have to break the door down to get her in if it came to it ... definitely didn't want that to happen ... Anyway ... 1 o'clock in the morning I get a text from her (battery was going on the phone at this stage) saying he still hadn't arrived!!! I told her feck that, get a cab now and get yourself over here. She did. Had a nice hot dinner waiting for her when she got here. As soon as she arrived in the door she gets a call from the locksmith saying he was still waiting for RAC and was going to arrange for someone else to come out to her instead. She told him where to go at this stage in no uncertain terms. So, she's only just left here now, got the number of a different locksmith with a shop quite near where she lives ... so I'm just waiting for the text to say she's safely back inside her home.
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Re: Kitkat's KK Blog

Post by Kitkat on Thu 29 Mar 2012 - 23:47

Today has been a real bitch of a day from start to finish.
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Re: Kitkat's KK Blog

Post by Kitkat on Wed 4 Apr 2012 - 12:18

Very productive day yesterday. Got a lot sorted out. Not been an easy struggle in reaching this point but at least I have a result through whatever means - and it's an enormous relief and weight off my shoulders.

As my brother says "end of Part 17 in the Saga" .
Next week ... Part 18 ..... (watch trailer on screen)
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Re: Kitkat's KK Blog

Post by Kitkat on Sat 14 Apr 2012 - 20:26

Heard from the DLA today. Not been accepted for either Care or Mobility bracket. They accept I have difficulty but don't consider I need help. Can appeal the decision within 1 month of the letter.
I will be appealing, and going into much more detail than was allowed for on the form.
More waiting ... but what the hell, it's become the norm now. I've got nothing to lose - and everything to gain. Not giving up. If nothing else, I need to see justice done.
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Re: Kitkat's KK Blog

Post by Kitkat on Fri 27 Apr 2012 - 9:46

Finally got my 'appeal' letter finished to send off to the DLA. I kept putting off posting it, chopping and changing bits here and there (3 page letter!). Eventually, yesterday, cross-eyed, weary and bleary, I decided with 10 minutes left before the postal collection, I'd put it in an envelope and get it off to them. Literally, just as I was doing so (synchronicity ... definitely!) ... the phone rang. Hospital - giving me notice that I have been booked in to the Pain Management Clinic - and this is to be at St Mary's Hospital in Paddington (not Charing Cross as I had originally thought it would be). Yet another different hospital, but definitely easier to get to than Charing X would have been. Only thing ... the earliest slot available is 19th July! More
Still .. at least something's happening.

That was a crucial PS to add on to my DLA letter before sealing it up and sending. If that letter doesn't work to get me accepted, then nothing ever will.

and Physio started on Wednesday ... although not much physio done at that session... as this is a new face/department/hospital yet again ... (Willesden Hospital), had to go through the usual long list of questions. They have suggested warm water hydrotherapy treatment - at some future date to be fixed ... and this will be at yet another different hospital - Northwick Park Hospital!
Ah well ... at least things are starting to move, albeit slowly.
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Re: Kitkat's KK Blog

Post by Kitkat on Sat 5 May 2012 - 20:55

Letter from DLA today - acknowledging my letter asking them to review their decision. They are looking again at all the info they now have. Can take 11 weeks before I hear their decision.
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Re: Kitkat's KK Blog

Post by Kitkat on Sat 19 May 2012 - 10:50

Stressed and exhausted. Won't go into detail now, but been one thing after another over the last few weeks. Still waiting to hear from DLA people but that's something I'm used to now - other agencies to deal with and it's just been one setback after another. Difficult to feel positive at the moment ...
but my sister is over for a holiday now which is really great. Beautiful sunny day today, not long up - and we're off to Little Venice ... going to get breakfast at the water cafe there (the barge that does all-day breakfasts where you can sit outside on the towpath, then we'll take a stroll down by the canal into Paddington Station. Just waiting for the painkillers to set in before we head off (had a few really nightmare days just gone, painwise) so hoping to just have a nice lazy day.
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Re: Kitkat's KK Blog

Post by Kitkat on Fri 25 May 2012 - 0:48

The long-awaited brown envelope arrived today from the DLA (well, it's yesterday now).
They have not changed anything in their Decision. Remains the same. I can appeal within a month, but I have no heart to do so. I've done everything I could possibly do and the whole thing has me banjaxed to the very hilt. This has been going on since January. I've had enough.
However, my angel voluntary advocate is now taking everything out of my hands (and more importantly, out of my head) and she is going to Appeal on my behalf. I will now leave it all up to her. She has a history of working miracles for others. There is a slight chance she might be able to do the same for me, but I'm really not holding my breath. Just taking everything day by day.
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Re: Kitkat's KK Blog

Post by Kitkat on Fri 25 May 2012 - 11:10

This is the latest newsletter from the excellent site, Benefits and Work. Gives some kind of idea of the sort of thing I'm up against - especially at this particular time when all these changes have just been introduced surrounding DLA, with further changes in the pipeline. As usual, my timing is not the best.

Losing your disability living allowance (DLA) may make you healthier, the DWP has argued, as they show how they plan to slash claimant numbers by half a million when personal independence payment ( PIP) is introduced. The cuts will also mean that only half as many people will get a combined award of both the care component (daily living component under PIP) and mobility component.

Meanwhile, Iain Duncan Smith has complained that two thirds of DLA claimants ‘fester’ on unchecked lifetime awards, so something had to be done about it.

Elsewhere, the DWP show they are soft on fraud – but only if you’re a multimillion business – and soft on crime – provided you work for the DWP.

Plus yet another charity discovers there’s no real work for them on the Work Programme, they were just being used and discarded by cynical private sector companies.

Last week saw an attack on the site by a national newspaper. We’re giving no details yet as we’ve complained to the editor and will, as in the past, refer the matter to the press complaints commission if necessary.

On Sunday the site slowed down considerably because all the publically accessible pages were being downloaded by a crawler company which specialises in finding and analysing comments about its multinational clients. Their clients can then take action to protect their reputations. We have now blocked the crawler company’s access.

It’s clear that the growing popularity of Benefits and Work makes some people very unhappy – and we’re proud of that, because it means our enemies believe we genuinely make a difference to people’s lives.

And if you read the regular good news from our forum you’ll know we also have lots of friends who say we have made a difference to their lives.

So, if you’re not already a member and you want to make the best possible case for yourself in connection with a DLA or ESA claim or appeal, join Benefits and Work today and save money on membership.

You’ll be part of a community of members that includes thousands of individuals and hundreds of advice agencies, law centres, solicitors, disability charities and other professional organisations. (Follow this link for a list of over 100 professional members of Benefits and Work).

Find out how to subscribe right now. (Open access)

POVERTY MAKES YOU WELL
The DWP have published an impact statement in relation to the introduction of PIP, which is set to replace DLA for working age claimants starting from next year.

According to the statement, the total number of people expected to get any award of the care component (called the daily living component under PIP) will fall from 2 million to 1,250,000 by 2016.

The total number of people expected to get any award of the mobility component will fall from 1,940,00 to 1,310,000.

But it is the number of combined awards that will drop most dramatically. The number of people expected to get both a care and a mobility award will fall by almost half, from 1,760,000 to 890,000.

In total, the number of awards is expected to fall from 2.2 million to 1.7 million.

The DWP do not believe, however, that anyone will suffer as a result of the significant cut in income which many sick and disabled people will suffer, arguing on page 10 of the document that they may even become healthier:

“. . . evidence is limited as to whether a change in income has an effect on health . . . It is possible that the policy could have positive impacts on health if it leads to more disabled people moving into work.”

You can download the impact statement from the DWP website and you can read more and comment in the Benefits and Work members only area.


Meanwhile, Iain Duncan Smith told the Telegraph that DLA has grown by 30 per cent in the past few years because it is ‘very loosely defined’ and ‘lots of people weren’t actually seen’. As a result, he argued:

“Something like 70 per cent had lifetime awards, (which) meant that once they got it you never looked at them again. They were just allowed to fester.”

The combination of implying that a large proportion of DLA claims are fraudulent, plus accusing people with permanent impairments of festering, brings us to a new low in the state’s attacks on the sick and disabled. Following on from Duncan Smith’s recent attack on Remploy workers, you could almost begin to believe that he has developed an irrational hatred for the majority of disability benefits claimants for which he should probably seek help.

You can read the full article in the Telegraph and Benefits and Work members can comment here.

CRIMINALS

Bringing criminals before a court and ensuring maximum publicity for their crimes is something that only applies to claimants as far as the DWP is concerned, not to their own staff or to the companies they do business with.

This was amply demonstrated by Channel 4’s Dispatches programme, which showed private detectives illegally using insiders to get hold of individuals’ personal data, including social security records.

Channel 4 discovered that almost 1,000 DWP staff were disciplined in just one 10 month period for unlawfully or inappropriately accessing claimants records. Yet there is no evidence that any of the culprits were handed over to the police by the DWP, in spite of the fact that accessing data is a criminal offence in such circumstances.

You can watch the Dispatches programme here and Benefits and Work members can read more and comment here.

This reluctance to prosecute their own also applies to the DWP’s business partners. Last week the DWP sacked A4E from just one small mandatory work contract, but the National Audit Office (NAO) has now accused the department of failing to properly investigate the company or many others who have possibly been guilty of defrauding the taxpayer.

In fact, of £773,000 worth of fraud by private companies involved in back-to-work schemes actually uncovered by the DWP, only £410,000 has so far been repaid.

You can read the full story in the Guardian and Benefits and Work members can comment on it here.

CON ARTISTS

The number of charities discovering that they were conned when it comes to back-to-work programmes continues to increase.

St Mungo’s charity, which works with homeless people particularly in central London, has not received a single referral from the three private sector contractors who are supposed to be sending clients to them.

Private sector agencies were under strong pressure to show that they would be using the skills of the voluntary sector when they were making bids for the lucrative work programme contracts. However, now that the contracts are safely awarded the charities appear to have been unceremoniously ditched.

Full story on the Third Sector website and Benefits and Work members can comment here.

OTHER NEWS

There’s much more news in the members area (members only) than we can fit into this newsletter.

Many thanks to everyone who has sent in news stories over the last fortnight, including: Beverley Hymers, John Pring, Jim Allison, papasmurf, Crazydiamond.

GOOD NEWS FROM THE FORUM – OPEN ACCESS LINKS

Finally, as always, a selection of good news from the forum:

Migrated from IB to ESA Support Group
“Thanks to the wonderful guides and also the information provided by the Members and Mods/staff on the forum.”

ESA appeal success, 0 to 18 points
“Thanks for all the tips and help on here.”

DLA renewal, high rate mobility and low rate care awarded for indefinite period
“Once again thanks to everyone on this brilliant site.”

ESA support group after 2 years
“Thank you to everyone on this site for all your help, support and your advice.”

Placed in ESA Support Group in 11 working days
“I would have been lost without your great guides.”

Moved from WRAG to support group until 2015 after lodging appeal on IB to ESA transfer.
“May I take this oppertunity of thanking Steve,bro 58, and Gordon for their help.”

IB to ESA Support Group without medical assessment
“Thank you, thank you”

Successful ESA appeal, 0 to 18 points
“I would like to thank this site for the assistance the manuals and other comments provided”

Placed in ESA Support Group after 10 minutes at appeal
“sooooo tired but sooooooo happy”

Success at ESA appeal
“Thanks to the excellent advice on this board, I have just won my appeal for ESA”

You are welcome to reproduce this newsletter on your blog, website, forum or newsletter provide it is properly attributed to www.benefitsandwork.co.uk

You can also read this newsletter online. (Open access).

Please note: the next newsletter will be in three weeks’ time because of the additional bank holiday on Tuesday 5 June.

Good luck,

Steve Donnison

Benefits and Work Publishing Ltd

www.benefitsandwork.co.uk
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Kitkat
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Re: Kitkat's KK Blog

Post by Kitkat on Fri 25 May 2012 - 11:18

This is the story mentioned in the newsletter that the Channel 4 Dispatches programme covered:

(I'm trying to see if I can get an actual recording of the programme to put up here - I haven't seen the programme myself)

http://www.theregister.co.uk/2012/05/23/almost_1000_offences_in_10_months_at_dwp/

Dole Office staff snooped into private data 992 times in 10 months

And that's just the times they were caught...

By Out-Law.com • Get more from this author

Posted in Government, 23rd May 2012 07:27 GMT

Staff at the Department for Work and Pensions (DWP) were disciplined a total of 992 times for unlawfully or inappropriately accessing individuals' social security records between April 2011 and January this year.

The figures were obtained following a freedom of information (FOI) request to DWP by Channel 4's Dispatches programme.

Last week Dispatches reported on the 'blagging' of personal data by private detectives and reported on the number of data offences recorded by DWP.

The FOI figures also revealed that in the past year the Department of Health had recorded 158 instances of unlawful accessing of medical records, according to a report by the Daily Telegraph. DoH said not every such instance is recorded though.

Under the principles of the Data Protection Act (DPA) organisations processing personal data must do so fairly and lawfully. They must take "appropriate technical and organisational measures" to protect against "unauthorised or unlawful processing of personal data and against accidental loss or destruction of, or damage to, personal data".

Under section 55 of the DPA a person is generally guilty of an offence if they "knowingly or recklessly ... obtain or disclose personal data or the information contained in personal data, or procure the disclosure to another person of the information contained in personal data" without consent from the 'data controller'. A person is not guilty of an offence if they can show that unlawfully obtaining, disclosing or procuring of the personal data was justified as being in the public interest.

The DPA also defines "sensitive personal data" as including personal data relating to an individual's "physical or mental health or condition". Because information about such matters could be used in a discriminatory way, and is likely to be of a private nature, it must be treated with greater care than other personal data, the ICO has said in guidance on sensitive personal data.

Under the Criminal Justice and Immigration Act the Justice Secretary has the power to introduce new regulations that would allow a custodial sentence penalty to be available for offences under section 55 of the DPA, but those powers have yet to be used. The current penalty for committing a section 55 offence is a maximum £5,000 fine if the case is heard in a Magistrates Court and an unlimited fine for cases tried in a Crown Court.

The ICO does have the power to issue monetary penalty notices of up to £500,000 for serious breaches of the DPA, but that is in relation to civil cases.
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Re: Kitkat's KK Blog

Post by Kitkat on Thu 31 May 2012 - 17:21

I came across this on the net while searching for something else. Someone enquiring about DLA Appeal. Has some similarities to my case (I am definitely going ahead with the Appeal). This kind of gives an idea of what I am up against. Also reminds me that I am not the only one. There's also mention of the ESA - which is the next thing that I have to tackle, starting from today, now that statutory sick pay is finished, I need to apply for ESA. Today is officially my last day of employment. Seems the Appeals process there is similar to the DLA, so this is just the start of another hard slog, which I am really not looking forward to.

Thread: DLA - Can I appeal against decision and is it worth it?


Hi,

I put in a claim for DLA on the 8th of May this year due to the fact that I have several problems that restrict my mobility and balance. All of which came on since around November last year.

I received a letter dated the 29th of July, today saying I am not eligable for any of the components of DLA.

I have two dessicated discs in my lumbar region and facet joint disease in the same area which was diagnosed when I had a MRI scan of my back after the Back Specialist I see up the local hospital was examining my back when I was sent up there for physio by my GP and I nearly went through the roof with how much it hurt.

I have a copy of the MRI report which states this problem.

I also see a Neurologist about poly neuropathy which the cause of at this time is unknown but I have had several tests to find out the cause including, MRIs, Blood Test, Nerve Conductivity Tests repeatedly, all which havent shown the cause yet except for the blood tests showing a lack of B12 in my body which now means every 3 months I get an injections of the vitamin from the nurse at my GPs.

I've also had a Lumbar Puncture and a sural nerve biopsy to try and figure out what the cause of the neuropathy is. I haven't received the results of these tests yet but I told the DLA that they were coming but apparently they couldn't wait on them.

I also have alot of trouble with my right hand now. I can't write for more than 5 minutes without my hand seizing up which means cooking a meal is fun as is cleaning and washing up.

I have a diagnosis for my hand not including the neuropathy which doesn't help matters. I've been told by the Orthapaedic Consultant who I see who specialises in hand/arm problems that it is DeQurvains Syndrome. I have tried everything to get this treated, I've worn splits, had a cortisone injection which made no difference except for my hand/wrist to hurt for 7 days non stop.

Apparently the decision maker made the decision that I can get up and down the stairs fine in my own time. Which is wrong I have to use either the stairlift if I am at home or if I'm out and there is a lift avaliable use that. If no lift is avaliable I am unable to get to where I am supposed to go.

Walking is a task an a half since my back hurts when I walk and I cant walk for long because of the neuropathy in my legs which makes them feel numb and my balance is affected.

I used to be able to walk to the bus stop to get into town. Now I have to get a taxi since walking to the bus stop which is a 5 minute walk for healthy people takes me about 25 to 35 minutes now.

Apparently they contacted my neurologist and my GP yet they didn't seem to be bothered to contact the Back Specialist I see up the same hospital. I only know this since they had me nag the both of them to get the letter to them faster when my Neurologist took a month to reply to their letter.

I also have asthma and my right kneecap likes to wander off in it's own direction at times (aka Patellofemoral Maltracking) which means it swells up and hurts some days worse than others. I mentioned all this in my claim yet I was still turned down.

I should mention I never once saw a DLA doctor to talk about this.
I also use a stick to help me walk now as I can't walk far without it as I look like a drunk when I do. My balance is messed up since I can't feel my feet properly.

Can I appeal against the decision or is it not worth the trouble.

Thanks in advance for any help.

Reply 1:
You certainly should have had ahome visit from their Doctor although it does depend what you put on the application. When filling it in you have to concentrate on your worst days.I you say that youhave good and bad days it will not help. Try and get a local Social Services rep to go through the form with you before you appeal but it sounds like you need to. Good luck!

Reply 2:
Hi,
yes you should appeal. See if you can find a group / charity which helps with filling in the forms and appeals.

Or contact Diac who should be able to help you with this.

Good luck

Reply 3:
Thanks for the replies.

I've also now got an ESA Medical tomorrow with ATOS (Yey isn't that going to be fun.... Especially since they've cancelled on me once when I had already been in the waiting room half an hour already.)

Anyway, can/will they take the ATOS medical into consideration if I put an appeal to DLA. Even though it's not nothing to do with DLA and it's ESA it's all still part of the DWP...when they get the report that is. Can they use this?

Thanks again.

Reply 4:
I had a home medical at home for my DLA and got high rate mobility low care. I then applied for ESA and have to travel 15 miles to have a medical assessment. I questioned this and bought up the subject but they don`t seem able to liase with each other. I also supplied them with a 28 page Harley Street Consultants report confirming my condition and inability to work (he came down to a local hospital to see me) but I still have to go!!

Reply 5:
By the way I`ve been cancelled twice,once as my friend who had taken time off to take me was getting me in the car!!

Reply 6:
DLA is turning down more claims than ever before these days. The light at the end of the tunnel is that a large proportion of these refusals are overturned (in the claimants favour) at appeal.

So yes, it IS worth appealing, however I'd get representation if you are finding it difficult. You can enlist the help of CAB or your Local Welfare Rights representation unit for free. You can find these services through your local council.

It is worth bearing in mind that DLA isn't paid on the basis of your diagnosis, as it is awarded based on the level of assistance a person requires with care or mobility rather than what the diagnosis is.

My advice is based on my opinion, my experience and my education. I do not profess to be an expert in any given field. If requested, I will provide a link where possible to relevant legislation or guidance, so that advice provided can be confirmed and I do encourage others to follow those links for their own peace of mind. Sometimes my advice is not what people necesserily want to hear, but I will advise on facts as I know them - although it may not be what a person wants to hear it helps to know where you stand. Advice on the internet should never be a substitute for advice from your own legal professional with full knowledge of your individual case.

Reply 7:

Sadly, yours is a common story with DLA applications. I had a similar experience with a claim for my daughter. Fortunately, I am a writer and researcher by trade and I took it upon myself to do my research and write a compelling appeal letter. 12 weeks later she was granted DLA at the highest rate and payments were backdated to the date of the original claim.

Since then I have been helping others with their appeal letters through my business. We have been very successful with the appeals (6 out of 8 have had the decision changed) but unfortunately, I am not able to provide this service free of charge yet because it is a very lengthy process and takes time away from my other work, but I hope to do so in the not too distant future.

You are absolutely entitled to DLA mobility and I recommend you stick with it and appeal. Research the Decision Makers Guide (this is the guide used to determine claims) and write a concise and detailed appeal letter providing any documentary evidence (doctors reports etc) to evidence that you meet the criteria from the DMG.

Reply 8:
Yes I would appeal, my son is currently appealing his refusal at the moment, and I would strongly reccommend that you contact your local Welfare Benefits officer and they can help you put the appeal together.
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Re: Kitkat's KK Blog

Post by Kitkat on Fri 1 Jun 2012 - 12:43

More from a different forum (of which I am now a member, but only to read - I don't post there). I joined so as to gain access to all of the helpful forms etc, and full reading in the members section. I must have a read of those guide notes for appealing DLA decision.

DLA -please help 1 Year, 4 Months ago
Hi,
This is my first post here so hopefully I won't make any mistakes!
I claimed DLA 18 months ago and was awarded high care and high mobility for three years, however in October I got a letter saying they had recieved information about me and I had to fill out the enquiry form. I have a pretty good idea who did it as I have a neighbour who has made false accusations against me and it happened just after I got a motability car. I developed a condition about 2 and a half years ago, I have constant pain in my back, my pelvis and legs. I have severe stiffness in my hips and joints. I can't walk without pain, it gets worse as I walk, I go really slowly and my left leg is turned in and I have to walk on the side of my left foot.
It hurts to do anything, I take painkillers but they don't help much. It takes me ages to get up and downstairs, to ga
et washed to get dressed, I havee to keep sitting down. I get anxiety and panic attacks when I am out. I can't sleep well, it is agony at night and its really hard to move to get up in the night and morning and it often wakes me up and i don't gt much sleep.
I had to have a medical at home 2 weeks ago and the doctor was usless, he hardly looked at me and was in a big hurry to get away.
Today I got a letter saying I am not entitled to an DLA and it has been stopped.
I got my gp to send a report and he said my spinal movement is limited and that I have not mad any improvement.
I have phoned my local welfare benefits for advice about appealing and I'm waiting on them phonong them back.
I'm really upset, I am in so much pan and now I'm going to lose everything just because somenne is jealous. I don't know what will happen with my car, I take it i will lose it so I will be stuck in the house again as I can't use buses or walk very far. And my neighbour will enjoy seeing me lose it.
I was hoping someone might be able to offer advice, I feel pretty down and upset to have a letter saying I don't have any problems, its a kick in the face really.
Sorry this has been so long, thanks for reading xx
Caroline


Re:DLA -please help 1 Year, 4 Months ago
Hi Caroline

I'm glad you are appealing. Please don't take the view that you are going to lose. DLA appeals have a high success rate and many successes have been posted on this forum.

You will find valuable advice in the DLA appeal guide in the members' area.

Good luck

Derek


Re: DLA -please help 1 Year, 4 Months ago
OK, take a deep breath.

You have a month to appeal. If you can't get all your documents in by then, the tribunal has the discretion to accept documents submitted late, but from what you say, your GP is on your side, so if your adviser says what is needed, you can ask your GP for a more detailed report.

You can ask the DWP for a detailed breakdown of their decision, but although you get another two weeks after that to get your appeal in, I'd recommend that you don't wait before putting your case together.

Take a look at our guide to appeals in the Help for Claimants section. It's not very long.

Survivor
Forum Moderator


Re: DLA -please help 1 Year, 4 Months ago
Thanks for the replies, I really appreciate that people will help me with this

I was thinking that the gps report wasn't very detailed, I was just upset at being thought of as a fraud and I asked him to write something for me. I know that when I did my original claim they wrote to him for a report and then I was awarded my DLA.

The only person I see is my GP. I did have an OT but nearly two years ago. I am waiting to see a rheulatologist and after that the gp will refer me to physio. I am worried about not having lots of propfesionals to back me up.
My gp knows how it affects me, he knows now much trouble I have walking so hopefully that will help.
I was realyy inimpressed by the doctor from the DWP. He barely looked at me till the end and asked me how far I could bend over, which was not at all, the whole thing took 30 mins from him arriving to leaving and he was impatient and in a hurry.
Thanks for the advice, the welfare benefits haven't phoned me back yet hopefully tomorrow xx

carolinemumof4


Re:DLA -please help 1 Year, 4 Months ago
Hi,
I don't want to be a nuisnace but I'm not sure what to do now. The welfare benefits haven't phoned me back yet, the woman on the phone said she would mark it as urgent though.
My award was stopped on the 26th of January. I'm sick with worry but I don't know what to do about things, its too upsetting to face up to. For example, I get housing and council tax benefit so they will have to be informed, I get extra tax credits due to the DLA so I will need to let them know and they will be gone too, and then the car, I know I need to phone them up but it's horrible, I'm not entitled to it anymore so I will need to sort out giving it back
My blue badge is valid till jul 12 so if they don't ask for it back should I keep using it or risk getting into trouble?
Sorry for rambling

carolinemumof4


Re:DLA -please help 1 Year, 4 Months ago
Hi
I just spoke to the motbility people and they said that I hve 6 months to people and keep the car in tht time which is a huge relief and really good of them. She said that if the appeal goes o then they get the money back and if it doesn't then I will give the car back. I'm going to look into funding a car myself in case, don 't know how though.
I don't know how they sleep at night.
Thanks xx

carolinemumof4


Re:DLA -please help 1 Year, 4 Months ago
Hi Caroline

You still have plenty of time to submit your appeal, so contact your welfare advisor if they don't phone you soon.

I wouldn't expect your housing benefit to be affected by loss of DLA but they would have to be informed. Your advisor may help you with this.

Good luck

Derek


#45748
Re:DLA -please help 1 Year, 3 Months ago
Hi,
Thanks Derek. I just recieved another letter telling me the same thing. I've hardly slept with the pain, I can hardly walk today, my hands are useless but it's so nice to get a letter telling me I can walk fine
I also got a letter from the welfare people asking me to sign some things and send them back. You have probably worked out that I'm a bit of a worrier and I'm worrying wether I should let DWP know that I am appealing while I'm waiting. I know I have a month from jan 28th, so I still have a couple of weeks. When I write to them do I tell them the reasons I am appealing or just that I want to?
Also, it says I could send them more information, the onl person I see really is my gp. Would it be worth asking him to let them know what problems I hav (I feel a bit nervous at that) or just wait and get a report for an appeal?
Sorry if I'm asking daft questions, I will have a look and see if I can find the answers.
Thanks, Caroline x


Re:DLA -please help 1 Year, 3 Months ago
Hi Caroline

It is not necessary to inform the DWP of your intention to appeal, as you have one month from the date of the decision to send the GL/24 appeal form, and this form is your Notice of Appeal, which includes the reasons for the appeal.

Your welfare advisor should complete this form and advise you of what supporting evidence to use, but it's not essential to submit all the evidence with your notice of appeal. This can be sent at at later date.

You can get a good overview of the appeal process from the DLA appeal guide in the members' area, but hopefully if you have a good advisor they will take care of most of this for you.

Best wishes

Derek


Re:DLA -please help 1 Year, 3 Months ago
caroline

When you lodge your appeal, you need to fill in a GL24 form, one of the questions on this, is why are you appealing.

I don't think there is any need to contact the DWP before making the appeal, if only because they will not do anything until they receive the form.

Yes, if you have more supporting evidence you can send it with the GL24, however, you can continue to send evidence for the appeal upto a couple of weeks prior to the Tribunal.

I know it is frustrating and undoubtedly worrying, but until you speak to the Welfare officer, there is little for you do but read the Guides.

Gordon


Re:DLA -please help 1 Year, 3 Months ago
Hi,
Thanks, I think I get it now! I have read some of the guides on here as well. I'll wait for the welfare people to get back to me!
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Re: Kitkat's KK Blog

Post by Kitkat on Fri 1 Jun 2012 - 13:09

And this is what's ahead of me with the ESA claim ...

From that same site(forum) above:

Are you struggling with employment and support allowance?

Are you completely confused?

We’re not surprised. Employment and support allowance is the most bewildering, unfair and badly designed benefit since the abolition of the workhouse.

The claim form is long, complex and often confusing.

The medical is carried out using a computer. It’s often rushed and it may not even be a doctor that assesses you.

The appeal system is deeply confusing, not least because employment and support allowance procedures and regulations are extremely complex and generate a huge amount of paperwork.

And because employment and support allowance is so complicated there is very little reliable information on the internet.

Jobcentre Plus offices frequently give incorrect advice.

And advice agencies just don’t have enough staff to deal with everyone who needs help.

It is possible, though, to understand how to complete the claim form and avoid the traps it sets for the unwary and unprepared.

And you can turn up to your medical knowing what will happen and what kind of questions you’ll be asked.ESA form

Even if you do have to appeal, it’s possible to understand the process and present your case in the most effective and convincing way.

Benefits and Work members achieve all this.

Because Benefits and Work is completely independent and we only care about helping you get the benefits you’re entitled to. We do this by providing you with the most honest, detailed and practical information available anywhere.

So, if you want to give yourself the best possible chance of successful claim: ... [goes on to say join this site (which I have done) ]
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from the Work and Benefits site

Post by Kitkat on Thu 28 Jun 2012 - 11:41



HELP MAKE CHRIS GRAYLING MAD

Here’s an opportunity for you to help make a minister wish he hadn’t interfered.

Back in March we wrote about the Ministry of Justice’s (MoJ) employment and support allowance appeals video (external link) on Youtube. The video was pulled after less than a week, on the orders of senior officials.

Independent benefits expert Neil Bateman
(external link), discovered that the video was taken down after
employment minister Chris Grayling emailed the ministry complaining
about, amongst other things, the fact that it told claimants:




  • that they are twice as likely to win their appeal if they appear in person rather than having a paper hearing;

  • that the DWP doesn’t normally send a representative to the hearing;

  • to send additional evidence to the tribunal, when Grayling wants it sent to the DWP.


Yesterday, three months later, the video reappeared and, to their credit, after
their initial panic MoJ officials seem to have left it unaltered. The
video is actually reasonably informative and reassuring for people who
have no previous experience of appeal tribunals.

Normally, however, MoJ videos get very little attention – one has had
just two views and few of the 120 videos on the MoJ channel gets more
than a few hundred views.

If Grayling hadn’t intervened this video would probably also have
remained largely unseen. Now, however, we’re asking Benefits and Work
newsletter readers to make it the most popular video the MoJ has ever
produced. The current record holder has had 4,269 views and the ESA
video currently stands at 1,063.

So, please, make Grayling mad by taking a look at the video and passing the link on to anyone you think might benefit:

http://www.youtube.com/watch?v=4L8EPHDjeqU (external link)
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Re: Kitkat's KK Blog

Post by Kitkat on Thu 28 Jun 2012 - 23:57

My physiotherapy has been cut short, as it's not working. I'm unable to do the exercises because it means lying on my back. Actually doing the exercises as such is okay, I have attempted once or twice to follow the programme he set out for me ... it's the getting up from my back afterwards that is the major (excruciating) problem. Anyway, physio suggested Pain Management Clinic as a first port of call (as he's not a specialist in pain as such) - see how that goes and then revert back to him.

I am due to start at the Pain Management Clinic at St Mary's Hospital in Paddington on 19th July.

I have just looked it up and found this: LINK
Interesting to note that among the specialists involved in the Clinic there, is an Acupuncture practitioner!

I'm quite looking forward to this. Smile

Pain management service

Pain medicine seeks to ameliorate pain or discomfort using, in combination, various medications, interventions such as injections, stress reduction, relaxation, exercise, education about pain and the basics of self-management of pain.

Inpatients may have acute pain following trauma or surgery, and are treated as necessary by the acute pain service, a nurse-led team with consultant input. Many also have chronic pain conditions, which will also be amenable to management by the team.

Patients with chronic pain conditions are referred to the pain clinic where the patient may be given a full multidisciplinary assessment by consultants, physiotherapists and psychologists. A personal pain management programme is planned, which may include the use of injections, other interventions, drug therapy, physiotherapy, acupuncture, occupational therapy, life coaching with stress reduction and relaxation, education and other complementary therapies.

All patients with malignant disease who are referred to the service are given a priority appointment and are usually seen at the request of oncology or palliative care colleagues.

Patients with acute neuropathic pain syndromes, in particular complex regional pain syndrome (CRPS), as well as other urgent pain problems will also be seen as soon as possible.

The service is consultant-led, working closely with specialist pain nurses and physiotherapists.
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Re: Kitkat's KK Blog

Post by Kitkat on Mon 2 Jul 2012 - 2:44

Can't sleep (or even lie down) cos of the pain, so I have had to get up and mooching around distracting myself on the computer. Been bad all day today (well, it's yesterday now). I had another scan on Friday evening (to monitor the existing ovarian cyst). Result is that it hasn't changed in size (been same size for 3 years) - said "there are some calcium deposits, but doesn't think this is anything to worry about." He is reporting to my GP.

While having the actual scan itself wasn't too bad ... nothing like the last one (which was sheer hell - have to lie on back for it), and Friday evening and Saturday I was just fine. I actually managed to do a little bit in the garden on Saturday as felt okay at the time ... but OHHHH! ... later was definitely NOT okay... and ever since that up till now. That probably didn't help much and might have contributed to it, but I'm pretty sure that the scan was the trigger. Haven't been this bad since right after the previous scan. Sad
----------------------------

Came across this while flicking through net :


Fury as Tory welfare police order kidney dialysis patient Paul Mickleburgh back to work

May 31 2012 By Claire Elliot (Daily Record)

-----------------------------------------


HE’s one of the world’s longest surviving kidney dialysis patients and has had 33 years of renal treatment, four failed transplants and 14 heart attacks.

But now, in a shameful indictment of Tory welfare cuts, Paul Mickleburgh, 53, has been deemed fit to work.

The dad of three, who was diagnosed with renal failure when he was 19, was forced to give up his job as a technician 20 years ago after his body rejected a fourth donor kidney.

He is now so ill doctors have taken him off the transplant list as he would not survive a fifth operation and will spend the rest of his life on dialysis.

The machine, which cleans his blood, is now the only thing keeping him alive.

But after more than three decades hooked up to it for five hours, three days a week, other organs, including his heart, are also failing.

The Government insists that under their new employment and support allowance scheme, which replaces incapacity benefit, “those found to be too sick or disabled to work won’t be expected to”.

But Paul, from Aberdeen, who has also battled cancer, pneumonia, 14 heart attacks in the last five years and suffers from spontaneous internal bleeding and brittle bones, has been placed in a “work-related activity group”.

This requires him to attend “work-focused interviews” and actively look for employment or his incapacity benefits will be cut.

Incredibly, the Department for Work and Pensions reached their decision without Paul even being interviewed or given a medical.

Paul said: “How ill do I need to be? Apart from being dead, I don’t know how I can get much worse. It makes me so angry.

“I was asked to tell them all my illnesses and when I had finished it was a page and a half.

“I enclosed all my medical history, medication, dialysis times and what it does to me after being on it for 33 years.

“But to my shock I have been passed fit for work and must attend work focus interviews and do everything possible to find work or lose my benefits.

“I’d liken this to what the Nazis did, working the disabled and the sick until they dropped dead and were no longer a burden.”

Paul, who has a mechanical valve fitted in his heart, a twisted bowel and suffers agonising joint pain as a result of prolonged renal treatment, has now written to his MP, Malcolm Bruce.

He needs painkillers just to get him through each dialysis session and it takes him a day to recover.

Paul wrote to the Department for Work and Pensions urging them to reconsider his position but his plea was rejected.

He was told: “You must take part in work-focused interviews with a personal adviser to continue to receive employment and support allowance in full.

“The adviser will help you take reasonable steps to move towards work.”

Paul said he believed it was “all to save money and they don’t care who they upset”.

He said: “It’s unrealistic and unreasonable to expect me to attend these meetings when there is no realistic prospect of an improvement in my health.

“I’m worried sick about these changes and I believe I took my last heart attack due to this cruel policy which makes the disabled feel they are a burden.

“My wife and children have all worked since leaving school. We’re not a family on the take.”

Paul’s wife, Joyce, who runs her own dog grooming business, said: “I understand that they’ve got to sort out the benefits, but there are better ways to go about it.

“There is just no way he can go to these meetings, let alone go to work. When he comes off the machine he goes home to bed and I don’t see him until the next day, he’s so exhausted.

“What’s he to do, kart the machine around behind him? It’s crazy.”

Aberdeen South Labour MP, Dame Anne Begg, said: “A lot of the changes being made by this Government seem to be particularly harsh on disabled people. And the people who are getting hit the hardest are those who have worked hard all their lives.”

A spokeswoman for the Department for Work and Pensions said they did not comment on individual cases.

http://www.dailyrecord.co.uk/2012/05/31/fury-as-tory-welfare-police-order-kidney-dialysis-patient-paul-mickleburgh-back-to-work-86908-23880089/
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Re: Kitkat's KK Blog

Post by Kitkat on Fri 13 Jul 2012 - 3:30

Another sleepless night. I think I had actually just dozed off when I awoke to the sound of the cat puking (under the bed!). Oh brilliant, just brilliant. I must have made a jerked movement because next thing the vice-like gripping pain is there. rock Can't move for the moment, but I know I have to get up, make my way to the kitchen .. get something to eat, in order to take a pain-killer. Done all that, and now I have to wait till it sets in before attempting to get back into bed (not to mention the cat sick under the bed which has got to be cleared up ... no way can I go anywhere near to tackling that right now. It's a major effort to put one foot in front of the other at the moment. Even the pressure of just sitting is quite intolerable at the moment. The computer is a great distraction.

I actually have the alarm set for 5.30 this morning, as my brother is over (arrived yesterday) and he's off to Holland on the Eurostar early in the morning. His eldest daughter, my niece (and namesake), has her Graduation Day there on Saturday. I would so love to be able to be there too but of course that's just out of the question with my present circumstances. Right now a trip from here to the kitchen is a major expedition for me.

Just realised what day and date it is today. scared Figures. shtum
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Pain Management Clinic

Post by Kitkat on Sat 21 Jul 2012 - 13:06

Good and bad re my first attendance at Pain Management Clinic.

The bad first ... Sad I spoke to them about the possibility of an operation. (This, I was told by the neurosurgeon way back in March, would be an absolute last resort and only after a year of seeing how I get on with physio and pain management clinic. Well, I had to wait 4 months on the waiting list for the start of pain management clinic, during which time the physio was ineffective, discharged from there and suggested I try the pain management first.) So anyway, on discussing the 'last resort' op at the clinic, and how I've spoken to other people who've had an op for this problem and they are absolutely fine now - I'm now told that with this specific op (spinal fusion) there is no guarantee that it's going to stop the pain! Seems it's not the same op that these other people have had, and not in same area. In fact, there's more than a 50/50 chance that the pain would still continue afterwards! head-bang That, plus the fact that the op is on the spine ... there are so many incidents where things can go wrong.

So, my one glimmer of hope for the long run has been dowsed into non-existence.

The good part is that my medication is being changed to a slow-release version - same medication, except instead of taking it every 4-6 hours ... the period after which the effect of it starts wearing off ... I will now just take 2 tablets a day and these work on a slow-release basis over a period of 12 hours. So at long last, hopefully, I'll be able to at least get some sleep.

TENS has also been suggested and I have to wait to hear from that side of it, though this is something I've tried before (for frozen arm or something minor) and really didn't get on with it at all.

The best bit is ... I will be getting a 6-session course of acupuncture. Very Happy That's the bit I'm pleased about. Whether it works for me or not, it's something I've always wanted to try out - and now I will have the chance to experiment (and for free Smile ). Course, there's a downside there ... the hospital have to apply first to an outside agency for permission (must be something to do with funding, that's just my guess anyway) before I can be admitted on the course. I'm told I will definitely be doing it because they currently have the spaces there for acupuncture .... but there's a long anticipated wait before hearing back from these people. They said to me if I haven't heard about the acupuncture within the next 2-3 months (!) to get back to them and they will try to jog it along. Told this is about the average! What sort of mixed-up, meddling, time-wasting, money-wasting, bureaucratic system have they got running in the NHS?

So, that's the situation anyway. I should be getting the adjusted slow-release medication on Monday, and look forward to at least getting some uninterrupted sleep once I start on that, and also, hopefully, some elongated pain-free periods during the day.
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Re: Kitkat's KK Blog

Post by Kitkat on Sat 21 Jul 2012 - 15:27

This is the op that I was holding out all my hopes for. Seems not such a promising idea for me, as my condition occurs in more than one place (2 discs). Sad

Lumbar Spinal Fusion Surgery

By: Peter F. Ullrich, Jr., MD
Article has been peer reviewed

A spinal fusion surgery is designed to stop the motion at a painful vertebral segment, which in turn should decrease pain generated from the joint. There are many approaches to lumbar spinal fusion surgery, and all involve adding bone graft to an area of the spine to set up a biological response that causes the bone graft to grow between the two vertebral elements and create a fusion, thereby stopping the motion at that segment.

For patients with the following conditions, if abnormal and excessive motion at a vertebral segment results in severe pain and inability to function, a fusion may be considered:

Degenerative disc disease
Isthmic, degenerative or postlaminectomy spondylolisthesis.
Other conditions that may be treated by a spinal fusion surgery include a weak or unstable spine (caused by infections or tumors), fractures, scoliosis or deformity.

How Spinal Fusion Surgery Works

At each level in the spine, there is a disc space in the front and paired facet joints in the back. Working together, these structures define a motion segment and permit multiple degrees of motion. Two vertebral segments need to be fused together to stop the motion at one segment, so that an L4-L5 (lumbar segment 4 and lumbar segment 5) spinal fusion is actually a one-level spinal fusion.

A spine fusion surgery involves using bone graft to cause two vertebral bodies to grow together into one long bone. Bone graft can be taken from the patient's hip (autograft bone) during the spine fusion surgery, harvested from cadaver bone (allograft bone) or manufactured (synthetic bone graft substitute).

Scoliosis Video
In general, a lumbar spinal fusion surgery is most effective for those conditions involving only one vertebral segment. Most patients will not notice any limitation in motion after a one-level spine fusion. Only in rare cases should a three (or more) level fusion surgery for pain alone be considered, although it may be necessary in cases of scoliosis and lumbar deformity.

When necessary, fusing two segments of the spine may be a reasonable option for treatment of pain. However, spinal fusion of more than two segments is unlikely to provide pain relief because it removes too much of the normal motion in the lower back and places too much stress across the remaining joints.

In This Article:

Lumbar Spinal Fusion Surgery
Spine Fusion Surgery Video
There are several types of spinal fusion surgery options, including:

Posterolateral gutter fusion—the procedure is done through the back
Posterior lumbar interbody fusion (PLIF/TLIF)—the procedure is done from the back and includes removing the disc between two vertebrae and inserting bone into the space created between the two vertebral bodies

Anterior lumbar interbody fusion (ALIF)—the procedure is done from the front and includes removing the disc between two vertebrae and inserting bone into the space created between the two vertebral bodies

Anterior/posterior spinal fusion—the procedure is done from the front and the back

It is important to note that with any type of spine fusion surgery, there is a risk of clinical failure (meaning that the patient's pain does not go away) despite achieving a successful fusion. Obtaining a successful result from a spine fusion requires and accurate preoperative diagnosis, a technologically adept surgeon, and a patient with a reasonably healthy lifestyle (non smoker, non obese) who is motivated to pursue rehabilitation and restoration of their function.

http://www.spine-health.com/treatment/spinal-fusion/lumbar-spinal-fusion-surgery
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Re: Kitkat's KK Blog

Post by Umberto Cocopop on Sat 21 Jul 2012 - 15:32

KitKat wrote:The best bit is ... I will be getting a 6-session course of acupuncture. Very Happy
That'll sort things out!

I do wonder, however, whether consultants etc. really believe that these placebo interventions work. I suspect that if people report back to them that acupuncture (etc.) has resulted in a major improvement in their condition, it's a sign that the condition is largely psychosomatic.
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Kitkat
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Re: Kitkat's KK Blog

Post by Kitkat on Sat 21 Jul 2012 - 21:48

Umberto Cocopop wrote:
KitKat wrote:The best bit is ... I will be getting a 6-session course of acupuncture. Very Happy
That'll sort things out!

I do wonder, however, whether consultants etc. really believe that these placebo interventions work. I suspect that if people report back to them that acupuncture (etc.) has resulted in a major improvement in their condition, it's a sign that the condition is largely psychosomatic.

I can't imagine that the NHS would agree to employ such an expensive (and controversial) "placebo" if that's all that it is. It does make you wonder, doesn't it (?) if there may actually be something in it, not necessarily just purely psychosomatic. I am approaching this with an open mind, and I should hopefully be in a position to perhaps have something tangible to show for it, if it does do any good... i.e. if, I am still in this constant pain at the start of the session (the same level of pain that I have been experiencing constantly over a long period of time without, so far, any treatment (apart from the attempt at physio, which didn't work) - as let's face it, the medication is not "treating" it as such, simply masking it over ... easing it; when the medication wears off, the pain is still very much there. Therefore, any kind of improvement should be quite easy to notice - and of course should not be temporary. If it does indeed "work" and stays okay for a while, but then I find it's crept back again after a certain period of time, then I will be able to say for sure - yes, it's psychosomatic, and works like a placebo. Of course, in that event you would have lots of people saying oooh yes, acupuncture really works, it worked for me ...

Be interesting to see, therefore, if it manages to get rid of this very real pain - and manages to keep it away. I would of course have to reserve judgement of that for a period of time before I could definitely say it had worked. Anyway, I'm not sure that they're going to be claiming to banish it altogether (don't know yet what they will be promising or what it will entail - but will be interesting to have the chance to explore what it's all about, one way or the other). Smile
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Re: Kitkat's KK Blog

Post by Umberto Cocopop on Sun 22 Jul 2012 - 11:10

My point is that if you sing the praises of acupuncture, which is nothing more than a placebo intervention, then it may make your underlying condition look less serious. i.e. if your pain responds well to placebo then it's largely psychosomatic.

A placebo response can mask pain but it won't do anything for the underlying cause of the pain.

If you want an op, I'd tell them that the acupuncture made no difference. Wink
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Kitkat
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Re: Kitkat's KK Blog

Post by Kitkat on Sun 22 Jul 2012 - 19:16

Umberto Cocopop wrote:If you want an op, I'd tell them that the acupuncture made no difference. Wink

Thing is ... I'm not so sure that I do want to have this op, and all the risks that go with it, when there is no guarantee that it's going to get rid of the pain anyway!

Spine Fusion Risks and Complications
By: John E. Sherman, MD
Article has been peer reviewed
http://www.spine-health.com/treatment/spinal-fusion/spine-fusion-risks-and-complications
The most common risk of any of the modern spine fusion surgery techniques is the failure to relieve lower back pain symptoms following the surgery. In the best of all situations, this risk occurs in a minimum of 20% of spine fusion surgeries. The likelihood of this result becomes even more frequent with fusions of three or more levels. This outcome is commonly referred to as “failed back surgery syndrome”.

There is also a risk that the vertebrae may not fuse together following the surgery, called pseudoarthrosis. With modern techniques happens in approximately 5% to 10% of spine fusion surgeries.

It is well documented in the medical literature that people who smoke have a lower rate of successful spine fusion

If pedicle screws are used, there is a risk that the screws may break or become loose and may require further surgery to remove or revise the screws and rods.

Anterior grafts and cages can migrate or subside, which may require repeat spine surgery. If the anterior devices were placed anteriorly (from the front), rather than through a PLIF or TLIF (approaches through the back), it is safest to do this revision spine fusion surgery with a posterior approach (from the back).

The Nurse that I saw at the Pain Management Clinic is not an expert in Acupuncture. This comes under the auspices of one of the other consultants there, whom I've yet to meet. I did mention to the Nurse that I saw, a question about the placebo effect with acupuncture, and she said something about there being two types (?) ... the Eastern (Chinese) kind, and then the kind that purportedly works on the basis of ...(she was trying to think of the word ... or at least a word to describe what she was talking about) - I filled in the word 'chakras' for her, and she nodded. (It was kind of like she didn't want to use the term or even discuss 'THAT' one giggle ) ... I didn't press it, as like I said she's not the expert there, so I will wait to see ...

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