I am 58 and live in Sheffield and have recently diagnosed with MR thru a routine eye exam. I really knew something wsa wrong prior to this and have had symptoms for about 15 yrs. I am unable to control my bladder and find this very embarrassing and have accidents if I do not restrict my fluid intake. Consequently I always try to go out in the mornings and do not have any drinks beforehand. I have claimed ESA and was told last week that I have successfully passed thier medical and am not fit for work. However I have been told I am in the Work Related Activity Group and must attend - don;t know when as yet - for work focused interviews and the like at the local job centre. I have read somewhere on this site that if I have no control of bladder ( or bowel but I am OK with that ) then I should be in the support group of claimants - is this correct? I have rung the job centre and they have sent me a form to appeal their decision but I am afraid to do so in case they stop my benefit. Prior to diagnosis I worked from home for ten years and we moved to a small bungalow because of my mobility problems. I do not want to be worrying constantly about this benefit situation but can’t get it out of my mind - I try my best to stay positive but am really worried about the bladder problem and what to do if I am asked to attend interviews and have an accident. I have tried all the pads and Tena lady stuff - they do not hold sufficuent liquid as I am sure you fellow sufferers will be aware. Is there anything I can do? I am on Solifenacin but it doesn’t help - been on it about a month now. I have also sent off to claim disability living allowance but there is no decision yet. Also my opthalmologist sat me down and told me I had MS - then referred me to neuro who agreed I had signs and sent me for MRI of my brain - this was normal and he now says MS is unlikely but not impossible - so I ask myself - why did the eye man tell me I had it in the first place? I am awaiting visual evoked potentials and MRI of spinal cord. then neuro says he will refer me for lumbar puncture but I will not be having that as it terrifies me. He also mentioned neuro myelitis optica as a possibility. Any help anyone could give about the ESA decision would be very welcome. Thanks MARY
Hi, I too was put into this group, I put in an appeal, in the meantime went to job centre for my interview, the lady I saw was very nice, couldn’t understand why they where putting people like us into this group, anyway about 6mths later got a letter to say they had changed there minds and I was now in the support group, so go ahead and appeal, take care, Anon x
Hi Mary, goodness you’ve been through the mill.
Ok, regarding the ESA. Lots of people get put in the work related group and then get put in the support group when they appeal. As Phil says, join the ‘benefits and work’ website. It’s about £20 for a year’s membership and is worth every penny. They have guides to all benefit applications and appeals… written by lawyers who are benefit experts. I highly recommend that you join and read about the appeal process and take it from there. Also, if your DLA application gets turned down, I would recommend you appeal.
I was diagnosed through a lumbar puncture (I had a few ‘bright spots’ on MRI but they still weren’t sure and were saying MS was unlikely). I went for the LP like a woman going to my own execution! I then had a very easy time of it. I didn’t feel any pain at all… a sense of pressure on the bottom of my spine but absolutely no pain. I had to lie flat for a few hours which is normal… (this was made difficult by the hospital fire alarm going off and me being wheeled out onto a fire escape… it was a bit like a ‘Carry On’ film). I then went home and was ok. Very tired for a couple of weeks (but that might have been related to the fact that I had been so nervous). It was worth going through because I got a diagnosis… which confirmed what I had already realised anyway.
Lots of people have an ok time with LP so please don’t be frightened. It will be worth it to know one way or the other. It’s terrible that you have been told conflicting things and an LP could clear that up.
Hope this helps, and seriously, think about appealing.
Pat x
Thanks for replies. Can the job centre people change us from the original group we were placed in - ie Work related activity to support group? Not too sure about this. Since my origianl post have been called back by lady from the job centre who has offered me a 9am apptmt for the interview - first one - as this obviously is better for me as I can go without having anything to drink first thing in the morning. I understand that I can appeal and am going to do so - have been sent a form - Disagreeing with our decision -but in meantime have also rung dept Work and Pensions today and asked for the criteria required to enable putting into the support group; I am sure that loss of bladder control must be there - it is so very embarrassing and disabling. I am told I will be called back with the criteria beteen 9 and 12 noon tomorrow. Will post again here when I have spoken to them. I really cannot face going anywhere in case of acccidents so it might mean I give up the benefit and try to manage on my husband’s wage. Thanks to all of you who took the time to reply. MARY
Hi Mary,
The staff at the job centre can’t change you from the WRAG to the support group - you have to go through the appeals procedure. (form GL24)
Pat has mentioned the Benefits and Work website and I would second the recommendation. It helps to know what to put on the forms and what to say at medicals. The guides to both ESA and DLA are excellent.
The criteria for getting into the support group do indeed include bladder control
Absence or loss of control over extensive evacuation of the bowel and/or bladder, other than enuresis (bed-wetting) despite the presence of any aids or adaptations
normally used.
At least once a week experiences
(i) loss of control leading to extensive evacuation of the bowel and/or voiding of the bladder;
or
(ii) substantial leakage of the contents of a collecting device;
sufficient to require cleaning and a change in clothing.
Please do not give up on the benefit because you deserve to get it. It’s scandalous that it is so hard to get into the support group. Many many people are winning appeals so don’t give up hope.
With regard to your incontinence issues has the GP referred you to a specialist service? They can help a great deal by making sure you are on the right medication and/or using the right protection. I take solifenacin and the nurse told me it takes a few weeks before it fully takes effect but there are others if these tabs don’t work for you. I am worried about you not drinking because it might lead to urinary tract infections. I limit my liquid intake at night (no drinks after 8.30) but hove found that solifencin allows me to go 3 hours between toilet trips during the day with normal intake of coffee and pop.
Hi Mary
do appeal I have just got put in the Support group Keep trying it is worth it.
regarding your bladder I had to try 5 different medications before I found one that worked. Do go back to your GP if the one you are taking does not work and try an alternative.
Sue
Hi Mary,
I’m afraid I don’t know anything about ESA etc but I just wanted to say please reconsider having a Lumbar Puncture done it is no where near as bad as it sounds. I had one done a few weeks ago and it was vertually painless, to be honest the blood test I had done afterwards was far worse !! and it gave my Neuro the last piece of evidence he needed to give my my DX.
DL xXx
Here are some usefull lonks and you can then determin why or how they have scored you:
Personal Independence Payment (PIP)
http://www.disabilityrightsuk.org/f60.htm
The following pages contain a mockup of the questions and you can score yourself.However it does state this is not accurate and will not help the outcome of a decission on benefits.It also explains the appeals system.
http://www.benefitsandwork.co.uk/
http://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-p…
They are very informative and worth a read and passing onto others.
I do not think it is too helpful to look at PIP exemplars when discussing ESA. They are similar but not the same. The ESA descriptors are readily available and it is especially important to get the wording right if you are aiming for the support group.
Time will come soon enough that PIP will be at the forefront of our minds as we switch from DLA but thank goodness it’s not today
Jane
Hi Mary
Don’t worry about the lumbar puncture at all, it will give you certainty of diagnosis. I had one at the Hallamshire and they were absolutely brilliant!
Take care.
Mr S
dont think it works that way. lumbar puncture is just part of the jigsaw puzzle.
i had a negative result of my lumbar puncture. other evidance over time was what eventually led to my DX and im sure many more had the same
I was told a lumber puncture was just to rule out other conditions, it doesnt actually confirm MS, if i had known this at the time of mine i wouldnt have had one,so if you dont want one, dont have one.
Thanks for all replies. AM waiting for a copy of my medical report from DWp as I told the doctor who examined me about my bladder problems and I would like ot see if he took note of that as I understand it would have put me into the support group as opposed to the work related activity group. I had a normal brain MRI and am worried about the rest of my tests - due to have MRS spinal column at Royal Hallamshire in SHeffield next week and then to be booked in for visual evoked potentials - not sure what they do when you have that test??? Anyone able to enlighten me? I am considering asking DWP to change their decision on the group I have been placed in but will be speaking to the MS legal adviser on the phone. Have an appointment with her on the phone May 9th. I rang the MS society and lefta message yesterday and received a call back this morning. I have 1 month to appeal the DWP decision so have until 24 May. I am afraid of lumbar puncture as I had epidural in 1973 - one of the first to be given one in SHeffield I was told - as my son was born breech - feet first. Since then I have had back trouble on and off for years with slipped discs etc. I am therefore worried and not wanting to have a lumbar puincture. Also I am told by my neuro that my brain MRI was normal and he said it makes MS unlikely but not impossible. I wonder what happens if the other tests are normal? How do you get a diagnosis? I was told by the eye consultant that I had MS and he scanned my eyes and did all sorts of tests before telling me. I also know that colours look greyer with my left eye - and the vision in it is barely there. Sorry folks - I am going on a bit but I worry constantly about the future My GP seems to want to wait before prescribing any new medication for me as he keeps saying we will wait to see what the neuro says. I am on Amitriptylline 75 mg at night and solifenacin for the bladder which isn’t working. I was on Pregabalin for a while and it was wonderful in respect of taking care of nerve pain but kept me awake all night so I had to stop it. I am unsteadier than usual today - can’t walk a straight line. For years I have been unsteady on my feet. I can’t walk anywhere in the dark as I can’t see the ground - I lalways look at the groung when walking and I can’t walk on slippy floors or on any downward slopes. Anyone else have this? A trip to Meadowhall shopping centre makes me break out in a cold sweat when I think of the floors and I can only go there with my husband and I have to walk slowly. My family think I am nuts but I can’t help it. If it snows or is frosty I have to stay inside. I am told by the eye consultant that there are no glasses that can be prescribed for me and there is no point in resting my eyes as it will make no difference so I am using a large magnifier to read. I can see from this site that loads of you waited years for a diagnosis - it is very frustrating. Thanks to everyone who replied - it is very helpful to know others with the same problems and it helps to know someone else is going thru the same things. Thanks again and I will post the results of my medical her when they arrive…hopefully today or tomorrow.
MARY
Hi
Like you I had an epidural in the early 80’s and have had back problems ever since. I had a lumber puncture in 2009 and Have no worsening of my back problems. If it will help with diagnosis go for the lumber puncture.
Hope this help re assure you about your back problems
Hi
It is important if you appeal to provide as much evidence as possible to the appeal officer, including anything that may be missing from your claim form.
You may get a call from the dwp to discuss reconsideration of your case. Give as much information as possible. It can be difficult to talk about personal matters, but if you don’t tell them then they can’t judge properly. If the reconsideration is not successful then it will go to the appeal tribunal.
Your benefit will not be stopped if you appeal and say on the form that you want the ESA appeal rate to continue. The appeal form is small so use more paper if required. ESA (C) for the WRAG stops after 12 months. You can claim ESA (I) after this but it is dependant on many things.
If you want a representative (friend, family, cab etc) then you can provide the names now or later.
I understand that there are delays in the process (3 months from sending appeal to reconsideration then further 7 months+ for tribunal due to volumes) so dont despair if you don’t hear much quickly.
Best wishes
s4ar