Has anyone with ET successfully applied for Disability Living Allowance (DLA)?

[Ginnyhelen]

[quonut]

Hi Ginnyhelen, I was diagnosed with PV and ET in 2007 and applied for DLA in march 2008 ( after having to give up my work due to the extreme fatague to name but one ) and after a period was turned down. However i did appeal and was awarded Middle care component indifinatly. I do know from research that most people who apply are usually turned down at the first hurdle so you have to APPEAL the decision, it is a great help to me and would really be in trouble without this help, be aware that the goverment is to abolish DLA next year and introduce a new benefit called PIP ( personal independence payment ) which means everybody on the benefit will be reaccessed. The best advice i can give you is to make a appointment with your local Citizen's advice centre, these people are really helpful and will guide you through the process and form filling. Good luck..Patrick.

[Ginnyhelen in reply to quonut]

Thanks Patrick, that's really informative and helpful. I will follow your advice and find out where my local CAB centre is.

Thanks again, Ginnyhelen.

[ourlife]

Hi, I applied years ago and was turned down but might try again thanks for the advice.

[Rachamim]

Thanks for your comments, Patrick. That's interesting. I have had PV for 23 years but it never occurred to me to apply for this. What reasons did you give to support your application?

John

[quonut in reply to Rachamim]

Hi rachamim, Sorry for the delay in answering your query, I was on the interferon injections at the time (for 4 years in total) I found that the interferon put me down and kept me down, with fatague been the number one issue, just so weak and sleeping alot,i had to give up work after about 5 months on the treatment, i had many issues with the treatment including short term memory loss, no appetite and lost weight, dry mouth, severe itch after shower, to name but a few but the fatague was the big one for me, remember if you are feeling weak, that will affect every part of your life so my life DID change literally over night, not only was it a physical issue but also a mental issue cos even to concentrate on anything (like a crossword) would bring me down. As for the present i was taken off the interferon last year ( side affects too severe) and i have found a big improvment in how i am feeling now, i am awaiting to begin the hydroxycarmanide treatment when my blood counts become to high, so get advice and speak to your local CAB who can advise you on your options. patrick..

[JediReject]

Hi Ginnyhelen. . Have a scan at an on line info provider - google 'Benefits and Work'. Costs about 20 quid for an annual subscription and takes you through the DLA form giving completion advice. Also deals with the transition from Incap benefit across to Employment Support Allowance. .There are some free sample guides which give you an idea of the service they're selling. Money well spent for me.

There are a number of other sites offering free DLA advice if you spend a wee bit of time searching. Hope youre ok.

[Ginnyhelen in reply to JediReject]

Hi JediReject,

Thanks for the information. I'm finding it very difficult to know what financial support, if any, is available - it all seems a bit of a minefield!! I will follow your suggestion and do a bit of research via Google.

Thanks again, Ginnyhelen.

[JediReject in reply to Ginnyhelen]

Hey no problem . . I had to give up my business so was left without an income. And having worked for 30 yrs counts for nowt in this barmy system, youve a better chance if you just land here jobless and homeless but thats me with my cynical head on. Its just when i rang up the benefit helpline on being diagnosed a young lad said 'Im not sure youve paid enough NI to claim'. And I had to wait 26 wks for mortgage assistance so we nearly lost our home although our mortgage was cheaper than a rental which we would have ended up in. Ho hum # you have to keep trying and not give up easily even though its at one of the toughest times of your life. So dont give up and as Quonut said even though you might be feeling 'Down Down' your local CAB will help you. Cheerz

[ETphonehome in reply to JediReject]

I would second JediReject's recommendation of this excellent website.

I was turned down for DLA in 2010 and re-applied last year using advice from B & W. I was a bit suspicious that I was required to pay a yearly subscription for the sites resources but it's only a small amount and every penny spent is worthwhile.

I spent months searching for support on the web to no avail, finding Benefits & work was a godsend.

Even with assistance and support applying for DLA is often a long, drawn out and highly stressful experience particularly with chronic, rare and invisible conditions like MPN's.

There are two components to DLA - "Care" and "Mobility".

The key thing to demonstrate is how your condition affects your day to day life as an individual.

I thought about withdrawing my application on numerous occasions but 7 months after I began the process I took my case to to a tribunal and won.

I can't emphasize just how much stamina and mental determination is required if you are to be successful. I was told by many people including benefits advisors and health professionals that I had no chance of getting DLA. It is much miss understood.

DLA is a non means tested allowance and whether you receive it or not is a legal not as many believe a medical question.

Good luck.

[JediReject]

Hi ETphonehome, , You did well to stick at it because as you rightly say the whole process is incredibly stressful . . I am about to start to put together my case for ESA which as you will know is to replace incapacity allowance , I havent been contacted yet but when I am I suspect I wont have much time to act. . Its a dreadful situation when after working for 30 years and now needing the state financial assistance you have to battle for it even though my chances of drawing state pension are very slim so I wont be a burden on the taxpayer then haha.

I took about 5 or 6 weeks to complete my DLA claim and wrote out every question I had to answer on an A4 sheet and roughed it out then went back and refined it until I was happy that I had conveyed precisely how I was affected. The website mentioned gave me handy tips which broadened out my thinking and led to me answering more questions than I first thought wouldnt apply. So ETphonehome good luck to you also and to anybody else unfortunate enough to not only be living with a difficult and unpredictable condition but having to rely on the state to support you. Cheerz.