Some advice needed 'what am I'

Paparika

I have an immune disease, this link explains what i have http://www.uveitis.net/ptinfoposterior.htm

It means a lot of time on steroids to suppress my immune system to control an attack, which can leave me with a lot neck and back pain, steroids makes my bones click really bad, i lost my vision last year in my left eye but was fortunate that i came back,

There is an added complication with immune diseases of additional immune problems, mine is neurological, although the doctors have spent almost 2 years finding out what exactly is going on with me, MRI scans show white matter changes of uncertain significance, whilst i feel very tired after only working 4 hours a day, this can render me useless for the rest of the day, its an admin job sat at a desk, but i also walk around the office so not stuck at a desk, some of the doctors think think that i have classic signs of MS and some don't (I am not looking for a diagnosis - bear with me) I eat healthilyish.

Presently suffering with my right arm, throbbing pain in the joints, loss of strength, had to take today off as i couldn't not of driven to work or do my work as i was in angony this morning and have had this for about 9 months so far, taking Diclofenac for it but double and more the prescribed amount to calm the pain to bearable.


I am being made redundant in March and the company has been so good to me over the last 1 1/2 years that i have worked for them, they have been extremely supportive. I am worried that i may not be able to get another job, with a company that has been so supportive.

ok so enough rambles, do I should I think about DVLA, I didn't think i would be suitable for it, Work has me classed as disabled but i don't feel that i am, or am I, the whole thing confuses me.


Any advice would be great, like i said, i don't want diagnosis, just advice on if you think i would be entitled to any sort of benefit as there are more days now that i am unfit to work, although it pains me to say that as i really enjoy working.

munchings-n-crunchings

Hello Paparika!

I am assuming you are considering DLA.....(DVLA is the car people)

DLA is based upon the care you need, not actually what your diagnosis is, and it is possible to claim without a final diagnosis.
Put in a claim.
Even though you may have differing opinions regarding what your final diagnosis may be, include as much detail as possible.

You do not have to consider yourself as 'disabled', or accept any other labels, just use them as a tool.

I have brought my autistic daughter up to understand that even though she may have numerous labels to explain her diagnosis, it's still her underneath it all.

The Benefits Now website has lots of information on DLA. Have a look at the Disability Handbook and the Decision Makers Guide, they have some useful info there.
www.benefitsnow.co.uk

Check to see if you have a branch of Dial nearby. They will be able to help with the DLA forms, and give you advice,

Good Luck

Munchie

Paparika

munchings-n-crunchings wrote: »

Hello Paparika!

I am assuming you are considering DLA.....(DVLA is the car people)

DLA is based upon the care you need, not actually what your diagnosis is, and it is possible to claim without a final diagnosis.
Put in a claim.
Even though you may have differing opinions regarding what your final diagnosis may be, include as much detail as possible.

You do not have to consider yourself as 'disabled', or accept any other labels, just use them as a tool.

I have brought my autistic daughter up to understand that even though she may have numerous labels to explain her diagnosis, it's still her underneath it all.

The Benefits Now website has lots of information on DLA. Have a look at the Disability Handbook and the Decision Makers Guide, they have some useful info there.
www.benefitsnow.co.uk

Check to see if you have a branch of Dial nearby. They will be able to help with the DLA forms, and give you advice,

Good Luck

Munchie

loool Yes DLA i think is what i meant, see my brain doesn't work with my hands.
speech wise i am just the same.

I assumed i would need documents etc from a doctor, almost like a certificate stating what was wrong with me to be allowed to claim anything.

My big worry would be i know that if i was fortunate to be allowed to have something then i would need to see one of their doctors, and what if they didn't know what uveitis was and what happens when i have episodes.. then turn me down because they didn't understand the implications of the disease.

Paparika

Just had a look at the website and answered the questions, says yes to high rate care component, but mobility £17.75, because my needs were not there, but i guess you have to state more what you personally cannot do against what you can do?

I suppose my mobility is more of disorientation when my hearing gets bad (forgot to say deaf in one ear), and when i get blurred vision or loss of sight in one of my eyes i get frightened to leave my home. I can walk when my joints aren't hurting me, when they do i have to ask people to go out and get what i need.... god i sound like a wreak, yet when i describe this to people i get the ... oh but you don't look ill.... don't you just hate that

munchings-n-crunchings

Hello again,

If when you fill in your application, give as much about how you condition affects you, and the care you need because of it.
The DLA decision makers have access to professionals, and also a computer system that advises them what difficulties a person with a particular diagnosis will suffer from.

So mention what you have been diagnosed with, and include what else is speculated.
The best person to tell them how your condition affects you....is you.
It's hard to see it in black and white, as it's human nature to pretend everything is rosey, and we are ok and can manage.
But put everything down, even if it's minor.

The decision maker may send out to your GP for what's called a Factual Report, if they feel they require more information. They do have GP's that they use for doing some assessments. Hopefully your GP will be able to supply them with extra medical info.
There is also a section for a person who know's you well, such as friend, neighbour.
Also space for any other medical professionals you have seen.

As it sound like your health has worsened, I would speak to your employer, an ask if they will supply a written statement, on how your are affected.
You can supply as much, or as little information as you want, but you need to get your point across.

Try and avoid Aspartame. It's an artificial sweetener found in fizzy drinks, squash etc.
I can't remember much, but there is some research into the effects it has on out bodies.

Regards

Munchie

munchings-n-crunchings

Whilst my brain is still switched on...shortly going off...

Scroll down to page 5 on this discussion board.
There is a locked thread by Thanatos, a DLA decision maker.
He is no longer able to post there or reply, but the information that has given in the past is there for all to see.

There is some really useful do's and don't when filling in the forms.
The RNIB will also have help and support.
http://www.rnib.org.uk

Regards
Mucnhie

Horace

Hi - there are a few of us on here who have uveitis. Mine seems to be under control at the moment thank goodness (the first time in 10 years too:j ). Uveitis can cause you to have secondary glaucoma (which I have got) and that puts us under the DDA because if we didnt take our meds then we would be unable to read. Do you attend your local eye hospital or do you just get treated by your GP? If just the GP ask to for a referral to your local eye hospital.

There is a uveitis support group based in Scotland (I will find the details elsewhere on the board and post them here). You might find this thread useful because it lists all kinds of disabled fora and support groups including the Uveitis one that I mentioned.

http://forums.moneysavingexpert.com/showthread.html?t=1223143

With regard to work - when you sign on at the jobcentre, ask to see a Disability Employment Advisor as they are more helpful than the ordinary advisors. When you start work again, contact Access to Work and make arrangements for them to come into the workplace to do an assessment - to assess what your needs are and they will make recommendations which the employer then has to arrange.

Paparika

My GP's are not very good very good at managing the illness or the side effects from the uveitis I'm managed my the eye hospital, fortunately 10 mins walk away from me,

Horace, I don't mean this to sound horrible but it is so good to hear someone else on this forum who has it too, I don't feel so alone now, if you know what i mean, i have so many questions to ask you, I will pm you these questions if thats ok.

Yes i know all about the Uveitis grp in scotland, the website has been very helpful in the past years for me to find answers to questions.

Whats DDA?


Ohh and i have just had a lovely new chair with neck support from access to work, with a few other gadgets for my desk, if i get redeployed within the company i work for then i can take these with me, otherwise if i end up leaving then i leave them behind.

somebody_else

Paprika - it sounds to me like you'd be eligible for DLA. I would advise keeping a diary (it's a !!!!!!, but worth it) of how your problems affect you from day to day, and make a list of all your symptoms, how they affect you, what triggers them, how they interact, etc. The more information you can give the decision makers, the easier it will be for them to make the right decision for you.

I've just renewed my claim, and it was awarded again even though I don't have a definitive diagnosis, only see 1 specialist every 6 months or so (she's tested me for practically everything she can think of, is no close to a diagnosis than she was 3 or 4 years ago, but (thankfully) hasn't just washed her hands of me. I also didn't get the extra bit of the form (from a 'carer' or someone who knows me well) filled in, so it's not an essential part of the claim.

I will warn you - the form is long, complex and you are likely to find it very stressful and depressing, but if you are given an award, it's worth it in the end.

Good luck (Oh, DDA - Disability Discrimination Act, if someone hasn't got there before me)

Paparika

Would you adam and eve it

Went to work today received a call from my boss's boss to tell me they have successfully redeployed me if i want it.

So i guess at the end of the day, its still a part time job, with an understanding company which is what i really want.

So no benefits for me.

But thanks all that have helped me as this is something i can look at again in the future if i need to.

somebody_else

Paparika wrote: »

Would you adam and eve it

Went to work today received a call from my boss's boss to tell me they have successfully redeployed me if i want it.

So i guess at the end of the day, its still a part time job, with an understanding company which is what i really want.

So no benefits for me.

But thanks all that have helped me as this is something i can look at again in the future if i need to.

You can still claim DLA whether you work or not. I was still in full time work when I was first awarded the Higher Rate Mobility component - I believe getting the care component is less likely as 'they' tend to work on the theory that if you can do paid employment, you can care for yourself. Never mind that you eat out and live on takeaways and ready meals because by the time you get home it's either cook a meal (from scratch) or eat, but never having the energy and strength to be able to do both.