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Mobility problems and Disability Living Allowance


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9 replies to this topic

#1 HERBIE

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Posted 25 February 2012 - 01:53 PM

Hi all
I have been diagnosed with limited scleroderma for about 3 years now - and the worst problem I have is excruciatingly painful feet. It was because I had such difficulty walking (and swollen, shiny feet!) that I kept going to see my general practitioner, and the result of a blood test showed it was limited Scleroderma. I have all kinds of treatments to help with hypertension, double base moisturiser, etc, but no one can seem to help me with my feet. It's meant that my life has been considerably altered in the past few years (I am 48 now), and where I used to be active and sporty, I can hardly get round a supermarket now. I have to use a walking stick, and have a range of painkillers and pain medication, but although they may dull the pain if I am resting with my feet up, they do nothing at all to help with pain in walking or standing. I work fulltime as a department head at a University, but they have been very supportive, and have got me things such as hands-free computer training, special chair etc.

Last year I received DLA (disability living allowance) with the high mobility needs component - it was fantastic, as I could get a motability car, and the money enabled me to get taxis if needed, and specialist shoes.

However, when it came for time to renew my DLA application in December, I was turned down from any kind of award (they came and took the car away in January). I am now about to appeal, and wondered if any of you had any advice I could use? Both my general practitioner and my Rheumatologist haven't treated anyone with scleroderma in their practices (not very reassuring) and it's got to the stage where I feel I know a lot more about it than they do.

The rhuematologist had to complete his part of the DLA application form, and the benefits people said it wasn't enough information. They sent an independent Doctor to give me a medical at home, and it was really hard going. He had no experience or knowledge about the condition, and seemed to think that if I could work full time, I must be OK. I feel I have to battle all the time to get people to understand the illness. The problems with mobility affect all areas of my life, from doing up my own buttons, to not being able to hang out washing any more. My husband is brilliant, but it has really changed our lives, and dealing with fatigue and constant aches and pain can get so debilitating.

Anyway, if anyone does have any experience with appealing DLA with scleroderma, and any suggestions of how I can improve my chances in appeal, I would be so grateful if you could let me know.

Thanks
Lois

#2 Joelf

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Posted 25 February 2012 - 02:44 PM

Hi Lois,

A warm welcome to these friendly and helpful forums!

I'm sorry to hear that you've been diagnosed with Limited Scleroderma and are experiencing such horrible mobility problems. I'm afraid it's by no means unusual that the average rheumatologist and general practitioner have very little specialised knowledge about Scleroderma which is why we do recommend that if possible you consult a Scleroderma specialist.

Although like you, I'm from the UK, I'm afraid I have no practical experience of DLA claims but I can understand the extreme frustration you must feel due to the withdrawal of your Disability Living Allowance. To help you I've included a link to our Disability Resource page and also to Disability Living Allowance on the Directgov website which I hope will be useful to you. Hopefully some of our other members will be able to give you more first hand information about the appeals procedure.

Now that you've found our forums and joined our community, do please keep posting and let us know how you get on with your claim.

:emoticons-group-hug:

Kind regards,

Jo Frowde
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#3 Amanda Thorpe

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Posted 25 February 2012 - 04:54 PM

Hello Lois

Firstly you must get a referral to a scleroderma expert who will complete your DLA form correctly, I recommend the Royal Free, London where I am a patient myself. Prof Denton, a specialist there refers to the pain you are experiencing as "mechanical pain" and it is the reason I use a wheelchair, well the first reason anyway!

A few days ago I wanted to wash my hair and had to wait for hours until the pain in my feet was low enough (a 5 out of 10 instead of a 7) so I could stand over the bath for a few minutes to quickly wash my hair. Who lives like that?

I understand your problem completely and I have 5 different types of pain in my feet, mechanical, rheumatic, neuropathic, ulcers and skin pain. I dread just having to put one foot in front of the other.

Take care.
Amanda Thorpe
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#4 inkedup

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Posted 26 February 2012 - 12:07 PM

You have every right to work, and I'm just wondering if under the Equalities Act the assessor is able to dismiss you like this? Also the Citizens Advice Bureau is really good, they helped my brother get DLA due to his mental health problems; might be worth booking an appointment and it's free!

#5 Amanda Thorpe

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Posted 26 February 2012 - 03:10 PM

Yes you have every right to work but unfortunately an employer also has every right to terminate employment on the grounds of ill health. No way I hear you cry but yes way.

Back in 2007, ironically whilst developing scleroderma, I went on a sick management course for managers, if an employee could not provide a return to work date this was a red flag for dismissal, even if they had cancer. I worked for the public sector, notoriously lenient employer, and yet even they had enough of people being off sick endlessly and still getting paid. It's a harsh reality but an employer can't keep paying someone to NOT work whilst someone else does their job or it just doens't get done.

When I realised I would not be able to go back to work I applied for ill health retirement afer 20 years of working for the same empoyer because I knew what would happen otherwise, my manager would have no choice but to being dismissal and she would have done everything she could to keep me at work.

Taking ill health retirement was the BEST thing I evey did because I can be stuck in bed and stuck in the house but know I am still bringing in an income.

Take care.
Amanda Thorpe
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#6 Cheerful Carole

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Posted 28 February 2012 - 06:33 AM

When I was diagnosed with scleroderma 7 years ago I applied for DLA. I was awarded just the lower mobility allowance, but my doctor (who had never treated anyone with scleroderma before), really went into it and when I re-applied, with the help of her updated report, I was awarded the higher rate for mobility, which meant I was able to get a car through Motability. Just stick with it - I am very lucky that my rheumatology specialist deals with the more 'obscure' rheumatic ailments and thoroughly understands all the problems I discuss with him.

It is nice to belong to a very specialised club, but not so nice when most of the time people don't understand what we are talking about. That is what is so good about this forum - you can come on here, have a good moan, and everyone sympathises.

Carole x

#7 HERBIE

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Posted 12 March 2012 - 08:27 AM

Dear all
First of all a huge thanks to your really helpful and supportive replies - your kindness made me cry, Iwas feeling really low (beginning to doubt myself and feeling totally isolated), and your support was really lovely.
To update: after your replies I decided I would appeal the DLA decision, and as part of that, I requested a copy of the report from the ATOS doctor who came to do the medical. I was gobsmacked when I got his report - there is a whole page which goes through daily activities (from dressing, to bathing, preparing food, using stairs etc) and he has put that I can do ALL of these with no help (despite when I completed my renewal form saying I can't do any of these without help). Then in several other boxes he has put the following comments 'normal pace/gait/balance' - I didn't even stand up when he came round! He certainly didn't ask me to walk either. 'Significant disability is not likely' (regarding my feet - which have deformed claw toes and excessive swelling), and despite the fact I had recent bruises on both forearms from recent falls ''unlikley to have any risk of future falls' ending up with ''severe restriction in walking ability is unlikely'.
After being speechless for some time (doesn't happen often with me, lol), my first thought was that the form I filled in was clearly completely ignored (where I point out I have to have help with dressing, bathing, am in constant pain with my feet, knees and hands (so much so that my general practitioner prescribes me methotrexate, hydroxychloroquine, and pain medication).

Secondly it made me really angry, as I felt as if my own experience of this rotten illness is completely disregarded by the decision makers, and one visit from a doctor with no experience or specialism in rheumatology (let alone sclero) over rides what I say. It really does make you feel demoralised.

So I decided I would appeal, and collected together a range of documents - one of them being my recent podiartrist's report - which clearly states that the autoimmune disease has damaged my tendons, synovial fluid, I bursitis, tendonitis, claw toes, cannot walk properly (in a lot more medical terminology about toes, bones etc), and suffer acute pain (bear in mind this report was also send to the DLA with my application - so it's not new to them).

I have produced a very long and detailed document as part of the appeal, going back through all the criteria headings in the DLA application form, and giving concrete examples of why/how I can't do things, and including things like I have Sjogren's syndrome, ulcers on my lower legs etc.

I have added the podiatry report, plus a letter from my rheumatologist stating that as my symptoms are significantly worsening (ironic then that I got DLA last year with no questions!) since October last year that I have been put on methotrexate, and have to see him every 4 weeks (at one stage it was every 6 months, then every 3 months and so on, as the pain in my feet became harder to deal with). I did show all of this to the doctor who did the examination, but clearly this had no impact on him at all.

I have booked a double appointment with my general practitioner this week, where I hope to get them to write a report or letter to go through how the disease has impacted on my life and increased need for help and support.

In addition, I printed off the brochures on this site, and other scleroderma ones, and put the websites for several support groups and information sites, and included all this in the letter too.

This has all gone to the appeal section of the DLA, recorded delivery. When I hear back, I will update you on the process.

I am lucky that I am a confident person, good with computers and used to form filling, and standing up for myself - but even so this process has been so far, really horrible, and distressing. I am determined to follow this through, and keep fighting - especially frustrating with a disease that no one has heard of, and has so many different symptoms.

Thanks again for your kind replies - much appreciated.
Lois x

#8 Joelf

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Posted 12 March 2012 - 11:55 AM

Hi Lois,

How infuriated you must feel with that doctor; please don't feel demoralised. The problem is that many general doctors just do not realise the seriousness of Scleroderma. He obviously couldn't really be bothered to review your details properly and it is a very good thing that you're such a positive advocate for yourself. We always do advise our members to be very proactive with this bizarre disease and it's treatment as it can make all the difference to the outcome; knowledge is most definately power!! ;) I've been very lucky with the way I've been treated by my doctors and consultants but sadly not everyone has been so fortunate.

Atta girl, Lois and good for you; ;) you're obviously quite a tough, determined cookie!! :lol: I'm glad you're going to appeal and really hope that you're successful! :emoticons-yes:

Best wishes,

Jo Frowde
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#9 inkedup

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Posted 12 March 2012 - 03:34 PM

Well done you! Despite a horrible experience it's really positive to hear that you're taking control; hope you get the decision you deserve.

#10 Amanda Thorpe

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Posted 12 March 2012 - 04:24 PM

Hello Lois

I am so sorry you are having to go through this and may I suggest that as part of your appeal you challenge the competency of the doctor who assessed you particularly as he commented on things he did not actually see you do! This doctor is clearly doing this over and over again and needs to be exposed at some point maybe?

Please keep us informed and please also know that we think you are fabulous and are very glad to have you here for sure.

Take care.
Amanda Thorpe
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