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The UKFibromyalgia Forums • View topic - How I got my diagnosois and DLA - no problems



How I got my diagnosois and DLA - no problems

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How I got my diagnosois and DLA - no problems

Postby laneebanana » Sat Jan 25, 2014 4:27 am

Hi all, I’m fairly new to this forum, and this is my first post – although I’ve read hundreds.
It seems to me that so many of you have problems with GP’s and hospital doctors, DLA claims and all sorts. I don’t know if I’ve just been extremely lucky but leading up to, and after my FM diagnosis 3 years ago, the doctors that I’ve dealt with have been extremely helpful – and my DLA claim was agreed straight away.

I did do things a little different to what my daughter calls ‘normal’, but hey, it worked for me so I thought I’d tell you how I did it and who knows it might help some of you.

I’d been back and forth to the GP on and off for a couple of years with various complaints – you know the ones – pain, tiredness, pins and needles, headaches etc etc etc…….

It always seemed that the 5 minute appointment was never enough to get across to the doctor just how bad I was feeling. So I sat with the laptop and wrote her a letter.

I went into absolute detail about every ache, pain, and symptom that I was suffering. I explained that the normal appointments weren’t long enough for me to go into such detail, and that I always left her feeling very frustrated – and sore – and with yet another script for pain meds. Believe me when I say I left nothing out – the letter was 3 x A4 sheets – typed in quite a small font size (10).

I finished by telling her that I had made an appt to see her the following week, at which I hoped she’d be able to tell me what was wrong, were all these things connected? was it all in my head? and so on.

A couple of days after I sent the letter, my GP called and said that she’d changed my appt for a different one at the end of the day, as she wanted to allow more time for us to talk.

When I arrived, she actually apologised! That looking back through all my previous appointments she could now see what was going on, but had never joined up the dots. She gave me an immediate diagnosis of FM and referred me to Rheumy for confirmation. She also gave me loads of written info, websites etc, to look at – including this one.

She knew that I wasn’t working and asked about my benefits, and when I told her that I was on JSA as I’d been turned down for ESA she went mad. Told me to re-apply for ESA then take the form to her – she’d help me fill it out and back it up with a letter.

When referring me to the rheumy, she told him that I’d been ill for over 2 years, that she would like him to confirm FM (if he agreed) and she also told him that I’d had trouble with sickness benefits. I was so relieved I cried.

The rheumy himself was fantastic, apparently he specialises in long term pain, and holds a clinic specifically for FM. How lucky am I?

Once the ESA was sorted – (I got it this time round, with no assessment – all on the back of my GP’s report) I applied for DLA.

The following was on the advice of my GP:
When filling out the DLA form, I didn’t ‘actually’ fill it in – back to my trusty laptop.
I wrote a short note explaining that I couldn’t fill the form in, as it was painful to hold a pen for so long – I have carpal tunnel syndrome in my right hand and have really grip the pen hard to stop it slipping through my fingers because I can’t feel it. I signed and dated all the relevant pages on the form and then .......

I went through the form question by question and answered them on separate paper - Page 7/Q12 followed by my answer, etc.
I explained that this enabled me, a) not to have to hold a pen, b) to save my answers and return to them as and when cos I could not sit at a desk for too long at a time.

BUT……. It also enabled me to go into sooooooo much more detail than they give you space for on the form.

It also allowed me to sort of ignore some of the specific questions. You know, the ones that you’re not too sure how to answer, by saying for instance Page 21 / Q 46 – 49, and giving a blanket answer covering all of them, but concentrating on the ones that you can answer easily.

Someone from DLA called me on the phone and talked to me about my ‘issues’ and said I would get a response within a week. He told me that he’d never seen it done like that before, but that the detail I had given made it so much easier for him to make his decision.
They didn’t contact my GP or the rheumy, but I was awarded middle rate care and high rate mobility for 3 yrs. – based purely on the very detailed answers I was able to give on my typewritten sheets.

I’ve just sent back my new forms to reapply for DLA, and did exactly the same again – 11 carefully typed pages of so much detail, they cannot fail to understand the pain I am in and the difficulties I have. I was absolutely amazed to receive a reply 6 days later (yes, that’s just 6 days) rubber stamping my claim for another 3 years. That has to be a record for DWP!!!

Yes, it’s time consuming, but when you’re done you really feel that you’ve been able to answer the questions properly, in the way that suits you.

Some of you may want to give it a try, it worked for me, and if it helps only one of you to get the help and benefits that you deserve, then this post will have been worth it.
Last edited by FluppyPuffy on Sat Jan 25, 2014 8:17 pm, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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Re: How I got my diagnosois and DLA - no problems

Postby catichat » Sat Jan 25, 2014 4:58 am

Wow!
You, for a 'newbie' have given so much help and info - thank you so much.
Can I ask, you say you received renewal DLA, when was this? Were you not put onto the universal credit?
I'm asking as I'm due to renew my DLA in July and wondered whether things have changed?
Thanks for all your info so far.. Look forward to hearing from you. :-)
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Re: How I got my diagnosois and DLA - no problems

Postby Kyomii » Sat Jan 25, 2014 5:43 am

WELL DONE!

Not sure why they say they haven't seen that before - I always do this - my last application I sent in 42 "additional pages" typed out (my daughter typed them up while I spoke the words) and the claim form explaining exactly how my life is. I do have other conditions though (such as heart failure/arthritis/asthma and more) and have to practically spend my life in bed/wheelchair.

Giving as much info you can helps tremendously but not everyone has an understanding doctor willing to give time regardless of any letter sending. If anyone feels their GP is not interested, the best course would be to approach them and be totally honest about how you feel they are not taking you seriously and/or change GP.
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Re: How I got my diagnosois and DLA - no problems

Postby relf1960 » Sat Jan 25, 2014 10:20 am

Hi, i too have typed in the past a massive letter and it helped me in the reconsideration process. Im back doing just that now or esa, and also for my tribunal for dla. This is because despite oing into such depths with the dla reconsideration, they chose to accept the atos doctors medical at my home instead.

Think this was because my doctor wrote me a supporting letter after i too gave them a letter like yours, where i had diagnosed myself through constantly being told for 35 yrs that some ppl are tired like that. I was sick of blood tests. Then as i had two ops for arthiritis they blamed al my pain on that.

Anyway the secretary never sent me the docs letter for about 6 weeks, so they sent the :swear1: doc to assess me n fail me instead. Now im doing it for esa again a dif doc wrote me one and typed it on dec 3rd. The secretary did there bit n it got sent me 16th jan. Id presumed itbeen sent direct to them. So im gonna av to report this to the surgery manager.

Meanwhile my letter gets longer n longer that im compiling. I have to type it cus i can ammend it a 1000 times before i send it. This is due to my fibro fog that makes it hard to word things properly until i go over n over it. But like you, until ive sent it off with every little detail in i wont be satisfied.

I also state the effect on my health from the appointments n appeals etc. im :swear1: :swear1: bricks cus it means the diff to me, cus i live alone, the diff between a life or just painfully n boringly exists. Keep ya fingers crossed for me x
Last edited by FluppyPuffy on Sat Jan 25, 2014 8:22 pm, edited 1 time in total.
Reason: Removal of expletives and replacement with emoticon, split into smaller paragraphs for easier reading.
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Re: How I got my diagnosois and DLA - no problems

Postby migrembe » Sat Jan 25, 2014 10:40 am

I have done all the forms on my computer, added my address to the form and personal information. I even have two sheets i call 'a day in the life of me'. Whenever the next forms come around i read through everything, update anything that needs updating and add a note to the affect, print it and send it. After taking 8 years to get diagnosed because of the stupid appointment system i did get an apology from the first Dr i had seen. The other problem at my GPs is that it's a big practice and there is no guarantee you will see the same Dr twice although you can request to do so, it was a Dr training to be a GP who was most helpful.
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Re: How I got my diagnosois and DLA - no problems

Postby 2measures » Sat Jan 25, 2014 12:09 pm

Thank you u guys I am going to look into this myself now and visit GP only problem I have is the retirement of the doctors so hence start it all over again. So going to do what you say and get a report from my Therapist who I see regularly weekly over the past 2 1/2 yrs, have seen other doctors, but surgery is not the way I want to go, so really only see my doctor 4 times a year for meds, they think that you need to see them once a fortnight to be classed having a problem, what a waste of time for those others that need to wait, to be honest you either have it or you don't, so moving forward I am now going down the benefit line as so many others have and see what goes from there, the hubby shouldn't be the one to pay, when we have paid our National Insurance stamp all our working life, government have already altered my pension date 3 times. So going to see whats due. Good luck to others that have tried.
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Re: How I got my diagnosois and DLA - no problems

Postby SallyC » Sat Jan 25, 2014 2:27 pm

Hi I have DLA that need to be filled in. I'm not due for a renewal until November but I was sent them so that I could try to get my award extended for a new motability car. Motability have given me financial help with an upfront payment and are paying for a hoist to be fitted for my scooter. I currently get High mobility and Middle rate Care. I got it for 3 years. My condition has worsened rather than getting better. I have Fibro, ME, Reynauds & IBS. I am under gp, rheumy, physio, hydro and the pain clinic. I know I am far worse that I was 2.5yrs ago, but I am so scared that they will turn my application down, so not sure wether to wait until I really have to do it in the summer? I also haven't got a PC, I just have my iPad which allows me to lay in bed and type, which probably means I can't do what you do? Also I haven't got a printer. I know I could go to the library to do it, but I would be in agony and have to go time upon time upon time. Please could someone give me advice as to what to do, I'm worrying myself silly. Thank you xx
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Re: How I got my diagnosois and DLA - no problems

Postby laneebanana » Sat Jan 25, 2014 3:28 pm

Hi SallyC,
Do you not have someone that you could send your 'typings' to by email and they could print it out for you? xx
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Re: How I got my diagnosois and DLA - no problems

Postby wilsal » Sat Jan 25, 2014 3:49 pm

I have just about given up getting a diagnosis. My previous doctor was always a bit short & unhelpful, (since I self diagnosed my under active thyroid!) so when I took in my sheets of FMS symptoms with only 5 or 6 not ticked, as he ripped it up & threw it in the bin, he told me there was no such thing as FMS, it was just a group of symptoms clubbed together under a 'made-up' heading.

I replied that surely this was true of all illnesses & syndromes, but he would never admit I had any problems & seemed to act as if I was some kind of malingerer, which I wasn't. I was actually working full-time at this point, including 12 hour night shifts! I have since moved & have a new doctor who I've never seen. although I've been up with several different problems, I haven't yet been with any of my FMS ones, as I've almost got used to them & just take pain meds & try to avoid doing things that make me worse. (sites such as this, which really help & each time a new symptom appears, I just put it in the search & sure enough, it's another on the list!)

I had no idea that I could get any sort of benefit payment, I've been out of work for over 3 years now as it's been impossible to find a job that I could actually do as I cannot sit, stand, write, type or anything else for any length of time & my brain has a habit of packing up on me, so I can't even hold a decent conversation anymore! And, although I can & do, drive, I scare myself because I seem to 'switch off' or blackout or something & find myself driving somewhere & have no idea where I am, how I got there or how to get where I should be!

My biggest issue is, do I get to my doctor to get diagnosed or do I wait till I've finished my house move in June when I shall have to sign onto a new surgery as I'm moving too far from my present one?
Last edited by FluppyPuffy on Sat Jan 25, 2014 8:27 pm, edited 1 time in total.
Reason: Split large paragraph into smaller ones and a bit of punctuation twiddling for easier reading
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Re: How I got my diagnosois and DLA - no problems

Postby laneebanana » Sat Jan 25, 2014 3:56 pm

Hi again,
It seems to me that I've been more than a little bit lucky than most of you. I've only ever had to have one atos assessment, and that was the first time I applied for ESA - that claim was rejected. But since my GP got on board, I've had no assessments - by atos or anyone - in the last 3, almost 4 years.

I do also have other problems - COPD, arthritis in my neck that causes sometimes really severe neuro problems in my hands/arms. and of course everything that goes with FM.

I'm in WRAG, but have only ever been to one work interview (I was never called back), and while they're not inviting me, I'm certainly not gonna offer to go. :lol:

I honestly think that this fairly easy ride that I've had, has been because of my GP. We had quite a long chat after I sent her that first letter, and she was honest enough to admit that she couldn't really do anything for me other than make sure I had good pain relief and, and then through the rheumy, access to the FM clinic.

She did however say, that what she could do, was to make sure that I got all the help and the benefits that I needed/was entitled to. And she has been true to her word.

The FM clinic I go to offers things like: relaxation classes, hydrotherapy, acupuncture, counselling, group talks, pain relief, massage, physio etc. and they have patient meetings where we can make suggestions for things that we would like (although we don't always get what we want :( )

So maybe the key to it all is the GP. Getting him/her on board is really important.

migremb, I found that being in a large practice with lots of doctors a good thing. Having seen so many over the years, I was able to pick out the one that seemed to be the most likely to be 'open' to my letter. When I go to the health centre now, I'll see anyone for most things, but when it comes to FM, i will only see her, even it means waiting a week or so for an appt. xxx
Last edited by FluppyPuffy on Sat Jan 25, 2014 8:28 pm, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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Re: How I got my diagnosois and DLA - no problems

Postby laneebanana » Sat Jan 25, 2014 4:08 pm

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Re: How I got my diagnosois and DLA - no problems

Postby FluppyPuffy » Sat Jan 25, 2014 9:01 pm



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Re: How I got my diagnosois and DLA - no problems

Postby FluppyPuffy » Sat Jan 25, 2014 9:23 pm

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Re: How I got my diagnosois and DLA - no problems

Postby olwynam1 » Sat Jan 25, 2014 11:20 pm

I also filled my DLA form in in the same way, using my computer and printing off the pages and received high mobility, low care. It worked for me also. xx
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