MESSAGE FOR PEOPLE IN UK WITH FIBRO

Discussion in 'Fibromyalgia Main Forum' started by RENA0909, Aug 18, 2003.

  1. RENA0909

    RENA0909 New Member

    I HOPE ITS OK TO POST ON HERE ABOUT FIBRO DISABILITY IN UK COS IT IS SSSSSOOOOOOO DIFFERENT FROM USA WHERE IT IS MORE RECOGNISED.
    IN UK FIBRO IS NOT WELL RECOGNISED AND MOST PEOPLE HAVE NEVER HEARD OF IT INCLUDING DOCTORS!!
    ASK JEEVES IS A GOOD PLACE TO FIND INFO FOR DISABILITY LIVING ALLOWANCE BUT YOU ALL SHOULD KNOW THAT THE FORMS ARE CHANGING SO IT WILL BE HARDER TO GET DLA.
    IT HAS STARTED IN BRISTOL AND WILL GO NATION WIDE SOON.
    WHERE AS BEFORE WE FILLED FORMS WITH TONS OF INFO ABOUT HOW FIBRO AFFECTS OUR DAILY LIVES AND THE AMMOUNT OF SUFFERING WE GO THROUGH EVERY DAY.NOW THESE NEW FORMS WANT LESS INFO SO THEY WILL NOT KNOW HOW IT AFFECTS OUR LIVES!!!!
    TRY ASK JEEVES (DLA) OR (BENIFITS AND WORK .CO.UK)
    THIS IS IMPORTANT FOR OUR FUTURE SO PLEASE CHECK IT OUT
    RENA UK

  2. RENA0909

    RENA0909 New Member

    BUMPING THIS MYSELF COS MOST WILL BE ASLEEP NOW!!!!
  3. pinkquartz

    pinkquartz New Member

    its good you have posted this but not good it is happening.

    i come up for review in the winter and i am already getting tense about it.

    i cant survive at all without this money.
    i have no one to fall back on and i have been ill so long i have debts not savings.

    this govt. want to trivialise FM and CFS/ME and say it will go away with anti-depressants and positive thinking.

    i hope this isn't going to be as bad as i think !

    pinkquartz
  4. nickname

    nickname New Member

    ....for that info. Tell me, if you have a diagnosis of FM, do they recommend CBT and GET as treatments? They do with ME. It just occured to me, that as the government is now putting funding into these 'miraculous' treatments because of the findings in the latest reports on ME, will they force us to follow these treatments before allowing benefits.If we don't, will benefit be stopped do u think?

    They are certainly making it harder all the time.

    best wishes
    nickname (UK, ME diagnosis)
  5. pinkquartz

    pinkquartz New Member

    i am getting *bad* vibes on this cos its the DLA and they are knocking people off it like crazy.

    it is possible to appeal and get the money back but its very very stressful and last summer i lived in total hell and panic.....i had been on it for 9 years and then this b***** doc turned up, on one of my bad days and after all the examing and telling me my blood pressure was high and i should see my Gp, he went and wrote that i had nothing wrong with me at all.

    i still go weird just remembering the shock.

    anyway , while its true that we are entitled to benefits i do feel my life is considerably shortened everytime i have to fight for what i need. :-{

    the best thing is that we are now warned.....and it might be that i have it easy on my next review, but this govt. are really p******* me off, i could do a better job running stuff even with my foggy brain !!!

    i want to thank you for sending me the links for the epilepsy.
    my friend is taking his meds and is lots better.
    got to go....i seem to be hassled off the puter a lot lately.....:-
    love, pinkquartz

  6. RENA0909

    RENA0909 New Member

    I hope i did not scare you all but i just heard about this myself and i know how stressful it can be when renewal time is here.I just wanted you all to be aware of these changes so at least we will be prepared for the new forms and they will not come as a great shock.
    Take a look at ask jeeves and i think you can download new forms.And it also tells you that you need to give as much info as possible now on forms but new ones dont give you space to tell how disability affects your life which is how we are assessed for dla.I know you had a bad time pinkquartz but do take advice from support group or C.A.B advisor who are there to help you and take some of the stress away.my sis works there and i know how important it is to get it right.Dont worry too much.You can always ask on here when you are due.
    Hopeyou are all having a good day
    RENA UK
  7. pinkquartz

    pinkquartz New Member

    its much better to be warned and ready.

    the cab are not much help here....we had this conversation before i think....nor are there any other resources in this area at the moment. all that kind of thing tends to be in the cities :-{

    as you say i can ask here for advice and ask jeeves.

    the main thing is i know ahead what they are doing.

    if you find out anything else keep us posted. will your sis answer questions ?
    thanks, pinkquartz
  8. maza

    maza New Member

    I have the doctors in Norfolk,no a lot about fibromyalgia.
    They have put me on a injection called methotrexate,which is helping.
    Has any body heard of sarcoidosis?as i have this as well.
    Please cheer me up.maza
  9. RENA0909

    RENA0909 New Member

    hi there
    yes we did chat about your bad time with cab but you probably got someone who was not qualified to help which is so bad on there part.i hope you complained cos by law they must give correct advice!!
    but if i can help in any way i will be glad to. i read your profile and cannot beleive that you lost your benifits but glad you got them back because you deserve them.
    take care,
    RENA UK
  10. RENA0909

    RENA0909 New Member

    JUST BUMPING THIS MESSAGE
  11. RENA0909

    RENA0909 New Member

    go to ask jeeves and type in BACK DOOR DLA CUTS
    hope this helps
    RENA UK
  12. tansy

    tansy New Member

    The longer you have been ill and disabled with ME/CFS the less difficulty you will have. You may well find yourself being awarded it for a much longer period of time as I was.

    Things are better now than they were. Mine was allowed because MPs got involved and my case was referred to a differnet office. Once there the prejudices and deliberately misleading comments were seen for what they were and my case was approved. A year later I was awarded it for life, or until they change the goal posts again.

    You should not have these problems.

    Love

    Tansy
  13. tansy

    tansy New Member

    If these forms do become nationwide soon there will be accessible info on how best to fill them in. Fibro was more often than not included in a ME/CFS diagnosis until more recent years so if the FM organisations in the UK don't have enough info check out the ME ones.

    One thing I always advised is that during any interview or medical there should be someone else present at all times. Not only can a third party ensure your needs are made clear and taken into account but they can act as witnesses too. Doctors can all too often say one thing but write something entirely different on your case notes.

    Cheers

    Tansy
  14. pinkquartz

    pinkquartz New Member

    for your replies

    Tansy
    in fact my attitude used to be that as i had been in receipt of dla for 9 years i would be ok. now i know that they do not refer to any previous claims.
    maybe this will change for the better in the new system. from what i have read on the website rena mentions i think its new claimants that will have the biggest trouble. however my experience last year waz very shocking and i am not joking when i say it took years off my life.
    i am too ill for this type of stress.....without the dla all my support from social services was also under threat.

    its not that i am being negative about it but last year shook me out of ever being complascent .also i got to hear lots of other *horror* stories. its not just people with our DD either who get bumped off.

    i think the fact that i am so severely ill is why i did get it back relatively quickly.....but its not an experience i want to repeat and so all the preparation before it comes is good.

    the summer before last i spent having to battle with social services over my care package and that was heavy too.
    i think that the systems in the UK are getting tougher.
    when i was first disabled by the DD and not able to rely on friends and family [as i had in previous years of ill-health] ,the social services in the area i was in were really good to me. and ditto the next area when i moved into more appropriate housing.
    its now everything is getting to be a fight and all i ever hear is cutbacks cutbacks........[i am screaming to myself as i write this ]
    sometimes i want to be well just so i am no longer dependant and vulnerable.......boy do i miss my independance
    Tansy can you tell this is a sore spot with me ! :-}
    ]
    i am glad for you that you have a lifetime dla but they don't do that anymore i am told.

    i know you want to reassure me, and i think its likely that my next review will go thru ok.
    i had 9 years of it being fairly straightforward.
    And i have the board to come to now...i was very isolated last year.
    i am a fighter......but i want to conserve my energy for healing, not fighting with these crazy systems.

    love, pinkquartz


    rena

    i had no idea that the cab were answerable.
    do you know if they have to make home visits ? as i am too ill to go to them.
    as i say above here i was reinstated after about 6 weeks because i am so severely ill everyone who knows me was shocked and disbelieving of the doctors decision. he was clearly on an agenda, my social worker reckoned that they are knocking loads off to see who bothers to make the effort to fight back. !!
    i could not have coped with waiting for an appeal to go thru , they take months not weeks.......
    i will check out the sites you mention.
    i am not worrying . i feel ok.....shock has worn off...

    how are you ?

    cheers, Ann


    [This Message was Edited on 08/20/2003]
  15. Ipegasus

    Ipegasus New Member

    Hi Rena,



    It would be really rare that the US would adopt an international form but I agree, they have always made it hard in the US. Yet, so many people with FM are getting SSI or SSD that finally NIH is doing some real research. They are realizing that many of those who are disabled really started with FM/CFS, because it affects our immune systems, it wasn't until we developed other more easily diagnosed illness that we finally would quailify for Insurance.
    I have been told by Rehabilition, that SSI recipiants will be herded toward Rehab because they are not really getting insurance but disability. They are really getting hit hard because of their foolishness for not putting money into researching FM/CFS. This means, I am too disabled to go to the University and they are betting that they can get as many off Social Security as they can. It is a pain but in the US every thing changes. I think it is stupid that those who get SSI are told they cannot work and get benefits. The benefits are so low, I feel anything a person can contribute, even a few hours a day, make a difference in this countries productivity. I also know that it is so hard to get benefits that many don't get SSI until they are completely incapable of work.
    It is great that they offer re-training for handi-cap but they do not really assess you to figure out what you can do, they just let you pursue what you would like to do, which in reality just might not be possible. Plus, it takes a long time for disabled people to learn new things. I can tell you that there is a portion of teachers who do not like to teach handi-cap students because we require more time to finish our work and ask more questions. I have had some really aggreivated teachers and gotten grades that did not reflect my ability but rather my inability to finish my work in a timely matter = wasting their time. Yet I have also had teachers who were wonderful, did not stress me out and understood my limitations. Of course I did very well in these classes and felt I was graded on my intelligence and not my limitations. A rare comodity in US schools.

    Good luck. Both my father and grandmother had SSI and worried terribly only to always get their renewal. I don't worry anymore. I earned the right for this benefit and it is dangerous for handi-cap people to be in a work place that is not adapted for this illness, so they cannot take too many people off of benefits.

    Take care,

    Pegasus
  16. RENA0909

    RENA0909 New Member

    Hi pinky!CAB do make home visits so ring and let them know you are dissbled well in time to get your forms done!!
    Let me know if you have any problems ok??

    PEGASUS!!
    I like what you said about people being urged to take jobs even though they are disabled because only today i got a letter asking me did i want a job!!I wanted to say yes if i can work fom bed !! lol
    I miss working SO MUCH !! I
    t makes me cry sometimes for the contact of workmates.We would have a night out if someone bought a NEW HAND BAG LOL !!!!
    Now i would need a minder to look after me and bring me home lol.
    I also think (have done for years actually)that what happens in USA happens in UK a few years later!!!!
    So i was not surprised to find this info about the changes in disability because US have it so hard and we follow in a few years!
    WOW!!!This has taken me so long to write because i have made soooo many mistakes and i used to be always top of the class in english right through school and correcting all my spelling mistakes has worn me out!!!!!
    TODAY I COULD NOT REMEMBER HOW TO GET THE PLUG OUT OF MY SINK AND I WANTED TO CRY!!
    But i didnt!!COS IM TO TOUGH BOOHOO!!
    RENA UK



  17. pixipip

    pixipip New Member

    Hi Rena and all of you in the uk.
    I'm a newbi to the site and I didn't know if i would find anyone else from the Uk. I'm in Cleethorpes in N. E. Lincolnshire. On a more morbid note it worries me deeply them changing the DLA forms again, I was refused it the first time i applyed, then aworded it a year later when my social worker filled it in for me, it took us three two hour sessions to fill the darn thing in, since then I have moved area and don't know anyone well enough here for them to help me, so when I came up for review I just couldn't face it, so am not getting it now. I know it's stupid But I just find it so degrading I had bad depression for months after filling the last one in and I just couldn't face it again, having to open up to total straingers about such personal things. I know I probably just have too much pride, but some times it seems thats all I do have. Sorry to be on such a downer, the way sick people are treated by this gov really peeees me off.
    Health, wealth,
    Love and Happiness to you all,
    Jacqui.
  18. Chrissy3

    Chrissy3 New Member

    Hi Jacqui,

    Just wanted to say hello as I am not too far from you. Live in Belton, between Doncaster and Scunthorpe and I like to have a ride out to Cleethorpes if I am not feeling too bad on a Sunday.

    Nice to meet you,

    Love Chrissy x
  19. DragonBall

    DragonBall New Member

    hi there i live at rotherham,and have took the kids loads of times to cleethorpes,on the train.my brother in law lives at doncaster and my uncle.we will have to have a day out together at the seaside!i could do with something for the pain,i seem to be eating the tramodol!!!stupid preditable tabs.
  20. pixipip

    pixipip New Member

    I'd love to meet up some time, any one know a way of passing email addresses or and phone numbers to each other without posting them on the board?


    Jacqui.