ME and DLA?

cherub1965

he isnt on medication,sees gp every three months or so just for a progress report and a chat really.he told my son to steer clear of support groups tbh,says they are all doom and gloom in his opinion.he has a very good friend who has fibro myalgae,think thats how to spell it. they speak alot and meet up now and again,she is really bad while my son is capable of a lot more.the heat makes him worse aswell he finds,prob the hayfever making him feel worse.he has pain but not spasms.he has suffered for almost 3 yrs now following glandular fever but he says he feels not 'better' but different,more able to function since the flare november to april.still has bad days,today he was up by 12,washed ,dressed and been reading,on pc etc just chilling,no naps,good appetite,yet he says he feels really bad.i suppose you just learn to live with it.i am in constant pain myself with my RA but dont really let it get to me,if you know what i mean.have admitted defeat over things like heavy gardening etc so am not having as many flares.

Aputsiaq

dmg24 wrote: »

DLA is awarded for CFS, if you are unsure of how to complete the forms you should get help from CAB/ Welfare Rights etc.

He may be eligible for Disabled Students Allowance at university, but this would be to make adaptations to put him on an equal with other students. It would not supplement his sutdent income.

This isnt quite correct.
DLA is not paid for any specific illlness so telling the OP that they "Award for CFS" is slightly misleading.

OP..DLA is paid according to mobility and care needs and the forms will ask for proof of your son's needs.
It doesnt matter whether he has CFS, an allergy to butter or acne, if he has mobility or care needs high enough, he will recieve the benefit.

Mojisola

TOBRUK wrote: »

Well I have never been to any support group - I wouldn't be able to function - listening, speaking etc would really tire me out, that's if I was able to get there in the first place! If I'm in a room with people chatting after a short space of time I'm shattered!

Our ME group doesn't meet much - it's the nature of the illness, most members just aren't well enough to get out and socialise.

We have a newsletter that keeps us in touch with what's happening in ME research, etc. We organise some kind of informative event during ME Week for members, medical staff and anyone else interested.

Members who want to join the telephone and email lists can contact each other to share experiences and we have group telephone contacts to speak to if members have problems. We can't solve people's problems for them because we all have ME and everyone's energy is limited but speaking to someone who knows what you're going through can be a huge relief. We share the information we have gained about ME which can save newbies a lot of time and energy.

Many GPs have this view of support groups but I suspect they have never been to meetings. When those of us who are able to get together manage to socialise, we are a far from gloomy lot! We have a good time together and wish we could get out more often but, as cherub's son is about to start uni, there will be far more interesting groups for him to join that the local ME group!

We encourage people with ME to join the support group even if they're not well enough to do anything because it gives us a joint voice. When we do publicity about ME or negotiate with the health authorities or lobby our MP, the more members we represent, the more we're listened to.

Our family's personal experience of claiming DLA hasn't been good. The questions seem to be aimed more at people with a disability, rather that people who are ill. It's much harder to answer the questions when you have a fluctuating illness which may let you lead a restricted but otherwise normal life on some days but leave you needing lots of care if you overdo things or get a cold - none of which are predictable.

cherub - Get help to fill the forms in and get your son to start a diary of how his health is each day and when he needs help and what sort of help. If his application is refused, the diary will be useful in showing how often - or not - he has needed care or has had mobility problems.

skint_kezza

I have Me and have suffered with it for 8 years. I am currently going through a hard time with my renewal claim of DLA but i have successfully got DLA 3 times previously. It is definitely worth applying and ME is very disabling illness!

If you need any advice pm me, as I've had good advice over the years with how to fill out these forms. Just make sure you write about what his bad days are as thats when it matters and shows how disabling the illness can be. I do always try to explain just how up and down this illness is and how ill i am after doing anything that uses energy, even psychological tasks and emotional energy.
Be as thorough as you can and write just how each symptom affects him.

Indie_Kid

skint_kezza wrote: »

If you need any advice pm me, as I've had good advice over the years with how to fill out these forms. Just make sure you write about what his bad days are as thats when it matters and shows how disabling the illness can be.

This is fraud. By doing this, you're saying he needs more help than he does. However, there is nothing wrong with saying "on a better day...", "on an average day..." & "on a bad day..."

skint_kezza

sh1305 wrote: »

This is fraud. By doing this, you're saying he needs more help than he does. However, there is nothing wrong with saying "on a better day...", "on an average day..." & "on a bad day..."

sorry, i'm very tired today and not getting my words out right. Of course i meant to say "on a bad day". Thats what i was advised and have done. I just meant to say they must say how bad it can get, even if its only for 3 days out of 7 as they must know how fluctuating the illness is.

I would certainly never advise someone exaggerating or making fraudulant claims, as its one thing that makes me so angry as it means genuine people in need get tainted with the same brush by people who think most people on benefits are fakers.

I was advised that for each question you must answer, like you say with "on my worst day... on an average day... and on a better day.."

cherub1965

sh1305 wrote: »

This is fraud. By doing this, you're saying he needs more help than he does. However, there is nothing wrong with saying "on a better day...", "on an average day..." & "on a bad day..."

it isnt fraud,i have rheumatoid arthritis and it fluctuates.there are days i can go out shopping,for lunch etc and there are days i can barely put a brush through my hair.i just always tell about the bad days as there are more of them,the woman in the benefits office told me to just put about the bad stuff on sons forms.thanks kezza,might just do that.god there are some pains on here,:D

skint_kezza

cherub1965 wrote: »

it isnt fraud,i have rheumatoid arthritis and it fluctuates.there are days i can go out shopping,for lunch etc and there are days i can barely put a brush through my hair.i just always tell about the bad days as there are more of them,the woman in the benefits office told me to just put about the bad stuff on sons forms.thanks kezza,might just do that.god there are some pains on here,:D

My pleasure. I will help where i can as i know just how hard those forms are. I've had 8 yrs experience of form filling, medicals etc.. Its draining having to fight so hard to get help. It does make me laugh how people say how easy it is to get benefits.

I'm the same that on a good day i can get out and about, but during that i will never feel well and i'll end up light headed, in pain and nauseous, but that has become my norm so i cope with it and push myself.
Some days, i can't even get out of bed or wash my own hair.

Indie_Kid

cherub1965 wrote: »

it isnt fraud,i have rheumatoid arthritis and it fluctuates.there are days i can go out shopping,for lunch etc and there are days i can barely put a brush through my hair.i just always tell about the bad days as there are more of them,the woman in the benefits office told me to just put about the bad stuff on sons forms.thanks kezza,might just do that.god there are some pains on here,:D

You're saying you need more help than you do.

cherub1965

sh1305 wrote: »

You're saying you need more help than you do.

pot and kettle?lol.i fill my forms myself,my consultant backs me up so if i wasnt telling the truth i wouldnt get higher rate mobility and middle rate care would i?i dont think a consultant would lie do you/ you know nothing about me,i have had nurses in every day for 4 months dressing my legs which are blistered and raw from drug reactions.i have been out today though,does that make me a fraud?