I am having a very bad time at the moment, having been refused DLA just before christmas. Did a telephone reconsideration over the phone and got letter saying this will take 11 weeks, I feel so alone as i don't know what to do next, have sent emails to various agencies and benefit rights but have not heard anything so far, am getting stressed out not knowing what i should do. Also forgot to mention when doing the reconsideration that I have recently had to buy a weelchair and that i am now getting headaches from the fibro. should i phone the Benefits dept and tell them or will this not help my claim?
Would apprsiate some advise on this urgently as don't know what i am doing.
thank you.
xxxx
Written by
scruffybabe
To view profiles and participate in discussions please or .
Never give up talk to your gp and get to see a specialist I was refused first but asked for a reconsideration I was then awarded middle care but nothing else I am in the middle of going for a tribunal as they do not understand how we suffer with getting about unfortunately they do not understand fibromyalgia and no mater how you try to make them understand they don't I was found ink the middle of a busy road one day I could not remember where I was going nor why I was n the middle of the road I can to go Luton my own now I have suffered with this for 10 years and just got this award . Stand your ground get someone who knows you very wel to write you a statement of how you are day to day and get has much help from your gp or physiotherapist if you have one. Don' t give up that is what they want stick with it and write a diary to show how you manage day to day remember it is your worst day you need to tell them . DId you have a medical .? If so get a copy of this and your doctors report they sent in you may find that they have not put things down right read it and markmwhat you do not agree with . Remember they are not there to give away money they don't want you to have it and you have got to explain what they have out down wrong. Remember stick with and don't let them get you down we get depressed enough with this illness you don't need some idiot getting to you more. Good luck and a gentle hug x
Thank you for your reply, it's nice to hear from you.
My gp is useless, last time i went to see him with my hubby he said tome "Dont know how you manage to work with your condition (i work part time), ive never seen anyone with fibro go to work in all my years as a gp" i was discusted and i have not gone back to see him since then. im sure he has'nt helped me when he did his report to the DLA office, don't know what to do now.
i have done this. what i need now is to see someone and for them to help me fill in the appeal forms and i would like someone who knows about the DLA to come with me to the appeal courts as i don't have anyone who knows about thes things to come with me. Even the advise papers some are hard for me to understand.
I would like to ask for your advise again, I wanted to change to another gp in my doctors surgery as my gp was not helping, unsimpathetic and i do not think he is helping me at all, i do not want to go back to see him, the practice manager has refused my request and has told me that i either have to stay with my own gp or move to another surgery. i am reaslly unhappy about this decision, i do not know where to start to look for a gp that is good at treating fibro in my area but i need to see a gp as my pain is getting worse and i am not coping.
I keep getting turned down , I am now in appeal for tribunal . It's so stressful
Which doesn't help. I am 49 I lost my husbsnd in January 12 , u have no one to help me get dressed or showered now . I work ft , but because I now have to do these things myself and it takes me forever I have to get up two hoyrs earlier to get moving a d get ready . They say I don't need help. I fall constantly , use a stick and would be able to do much including work without my car . I really don't know what we have to do to dhow these people that this is a disability . But because we don't get the benefit we are not considered disabled , BLOODY JOKE . Sorry rant over x
So sorry to hear that you lost your husband, it must be very difficult for you. I have been married for 40 years and can't image what it would be like if he was'nt with me. I also work, part time, i'm struggling but as i need the money have got no choice. Again im luck cause hubby drops me off right outside my work, i can't drive anymore. My gp very unhelpful and no understanding, last time i went to see him hubby was with me, gp said "i can't understand how you manage to work with your condoition, in all the years ive been a gp this is the first time i have seen anything like this" i have never been back since then as waste of time, he did'nt know how to treat me, kept saying i had to get rid of the anxiety first, treating me like a ginee pig trying different drugs, now got pain killer patches but not working, nothing works and im fed up with it all.
Hoping that you are feeling a bit bgetter today. Good luck with everything and hoping we can keep in touch.
Hello , thanks for ur reply , yes been very hard , Gary has been part of my life since u was ten , so 39 years . Yes would be livly to keep in touch where are u in the country x x
How long have you had fibro, i was only diagnosed by rumatologist in August but had pains since June.
Have you just got fibro or do you have other conditions.
It's so nice to be able to talk to someone else, I have not told anyone about my fibro at work, am frightened to say anything in case they get rid of me and i need this job.
Don't have anyone at all in wiltshire, only hubby lol
Im so sorry to hear about your falling, i know it's not nice as the same thing happens to me, i get confused and evrything around me is spinning and i don't know where i am, its a terrible feeling thats why i can't go out anyehre without my hubby.
Ive just spoken to a solicitor from a law centre who will be helping me with my dla claim ( he told me to change to another gp in the practice and that i should have been refferd to a chronic pain team at the hospital and a ocupational theripist but i was'nt given any of these things - do you have any of these services HG12?
I hope that you are not having too much pain today and that you are feeling a little better.
I can't afford the solicitor either but these ones are free, you don't have to pay anything, the one i spoke to on phone yesterday was very good, they specialise in DLA, benefits, appeals and tribunals. You should look up on internet as im sure there would be a branch in your area and they will help you, you really should have one to advise you with the forms and to attend the appeal hearing with you, stand a much better chance if you take solicitor with you. see if you can find something under info@berkslawcentre.co.uk, they don't charge you anything, best to telephone for some advise. The guy i spoke to yesterday was very good and told me to contact him again when i have sorted out my gp and been to pain clinic, said he will help me with my appeal forms and come with me to any hearings which gives me some hope!
Take care of yourself HG12 and don't give up, have a lovely weekend.
Its only what i would say BUT for what its worth here it is
1. DO NOT GO AWAY AND GIVE UP
2. Keep records of everything.
3. Get all the help you can from specialists (if you dont have neurologist or rheumatologist then next time your GP makes comments like that ask to see one.)
4. Appeal, contest, check your correspondence with a fine toothed comb.
5. If your appeal fails then go to tribunal.
6. Always take the best help you can afford (solicitor, CAB, welfare, advocate) NEVER face either ATOS, or tribunal on your own.
7. If your tribunal is a sham, ask in writing for the written record of proceedings.
8. If like in my case they after taking 10 months to get to tribunal, and 7 months wait for the notes after their decision, insist that they "set aside" and retrial.
If they provide tribunal notes then you can tackle them for retrial on a point of law, a judge will have to decide whether you are allowed a retrial.
If I give up after applying, appeal and largely unsucessfull tribunal they will keep all that they owe me dating back to initial application in 2011, so Im not about to roll over or re apply.
It is enough on its own to make you sick with worry, but dont let them push you away from what is your right.
Get all the help you can and here is hoping for a fair outcome for you.
Thank you for your advice and i hope that you are sucessful with your tribunils.
I contacted a free law center and they have given me some very helpful advice as well, im so fed up with the battle already and most of all that no one realises the pain we are in and that we always have to try and get on with it and suffer in silence. I, like many others, have terrible pain and discomfort day and night as well as feeling that everything is spinning round and not knowing what is going on, but we carry on. I will not give up but i know the fight has only just started. How do you find a GP that will actualy listen to you and who understands what having Fibro is like?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.