vickie 40

[vickie40]

Hi Im new here, just wanted to give those with bechets a heads up with regards to Personal Independence Payments. I have just been awarded both low rate care and highest rate mobility. I suffer from both rheumatoid arthritis and osteoarthritis along with vitamin D deficiencey (big in peoople with bechets!!) I was awarded my PIP as my mobility is variable due to arthritis caused by my bechets. It was a quick and simple process and was made easier by supporting letters from my consultants and Dr's . My advice to anyone thinking about claiming DO IT!! I will offer help and support if anyone requires it. I have the normal mouth ulcers and ulcers down below!! I have just had a hip replacement due to poor bones. If you have bechets PLEASE get your vitamin D levels checked as I had none and this caused my bones to crumble ouch! Oh and if your'e thinking about PIP do it! Bechets is a very disabling condition aand if I can get it so can u!! xxx

[Eliciasmom]

What is this Personal Independent Payments. Never heard of it before?

[vickie40 in reply to Eliciasmom]

It is what used to be the benefit called Disability Living Allowance. PIP is for those who have conditions which affect their daily lives. Ring your local benefits office or the Personal Independent claim line. you mus TELEPHONE or you will not get the form. Take a look at this benefitsandwork.co.uk/pip/i... great to help you identify if your'e entitled to it I was!!! If you need any help with the from just ask, oh and always fill it in as though it is your worst day. x

[Eliciasmom]

Thank you, but I am in California USA. We don't have that program, sounds good. I will look into what our state has to offer, there just might be something similar.

Thanks and good health to you.

[vickie40]

No problem thats a real shame. But yes do look for a scheme it is worth exploring I have been lucky and I hope you will be too x

[baiitboat]

Hiya Vickie thanks for the info my husband has Behcet's and has been awarded the low rate pip on mobility his Behcet's has got worse since that and I have phoned them for a new assessment can I ask a question do you receive ESA we have just lost the Appeal as the dwp have put my husband in the work related activity group we are now waiting for a date to go to the tribunal court as the doctor who did the assessment at atos said my husband would be fit for work in 18 months time(which is a joke as he was medically retired from his employers due to his Behcet's ) i get very down hearted with the lack of help or support from people who are supposed to help and also very angry with the benefits system who seem to enjoy putting spanners in the works we have sent them all kinds of different medical letters from various health care professionals but it seems to make no difference at all. as if life isn't hard enough they seem intent on making it unbearable sorry to ramble on not a good day today my husband has been admitted to hospital with severe stomach pains and the doctors don't know what it is life isn't being very kind to us lately would just like someone too give us a lucky break but the chances of that happening are slim I am sick of fighting for the things that I know my husband and every other person who is a sufferer of Behçet's disease the disease that doesnt always have signs that the eye can see but for the people and the partners who live with it everyday is like climbing a mountain that we never reach the top of thanks to all those that read this post and we would value your opinion x

[xandii in reply to baiitboat]

Hi Hun,

What you have stated here about your husband losing his appeal because the doctor has stated he will be fit for work in 18 months time rang a distant and faint bell somewhere inside my head.

Some years ago, in the BSS newsletter, there was an article that stated Behcets had now been accepted as a condition that was officially logged as one that comes and goes in flares and remissions and is a life long condition. There was a ruling made under some medical act stating this as official and we were advised to quote the number of this act on any benefit forms from then on.

Unfortunately I never made a note of this act or number as I had no need to but logged it somewhere in the back of my brain should I ever need to drag it out again in a situation such as yours. By quoting this act (which I am pretty sure was a European Central medical decision) it would illustrate that if your husband had a firm diagnosis of BD then he would come under this ruling making a mockery of the doctors 18 month diagnosis for return to work.

I am so sorry I don't have the facts in front of me but I am pretty sure the BSS will have made a note of something as important as this so they should be able to look it up for you ready to quote at your tribunal appeal ? I know it was some years ago ( possibly 10 ?) but I can't see why something like this would ever be revoked once officially decided so it would be well worth getting in touch with the BSS and asking for their help on this one.

Sorry I can't be any more explicit but my brain is a little addled with years of BD now as well ! Lol At least it gives you a faint glimmer of hope to have a look at now.

Good luck,

Take care,

X

[Caz321 in reply to xandii]

Hi I have been trying to look for this act as in the same situation.

You couldn't point Me In the right direction I looked on Google with no success 😔

[xandii in reply to Caz321]

Hi Caz,

Since telling people about itI have been trying to find it myself and can't as yet. The place I found out about it was in the BSS newsletter around 2002/2003 ?? Stupidly I didn't need it at the time so didn't write it down but thought that if ever I did then I could refer back to the BSS and they would tell me ! Lol

Can I suggest you get in contact with them to check if someone registered it on their notes. I'm sure something so important as this must be logged down somewhere in their files !

In the meantime, I will start hunting my house from top to,bottom to see if I happened to keep the copy of the newsletter with it in just in case. If I find anything I will publish it ASAP but in the meantime contact the BSS okay ?

Good luck and take care.

X

[vickie40]

Hi sorry for the late reply. No I dont get ESA due to my husband getting it he has Chron's disease along with Chroinc Pancreatitis so I am effectively HIS carer. A tricky situation but we just have to get on with it. I am sure like myself and many other sufferers your husband gets arthritis? I have ended up with both Osteoarthritis and Rheumatoid arthritis and recently had to undergo a full hip replacement. I also have arthritis in my lower spine. NONE of this was discovered until the pain in my hips became unbearable My GP sent me for xray and this was identified. It was not picked up on an MRI or Bone scan which I have regularly. It was arthritis that ensured I was awarded Enhanced PIP (which due to operations will be reviewed after only a year! ridiculous as I have arthritis in my hands legs hips and spine etc...).

Did you get a full report on the reasons it was denied? We were given a full report but we were reviewed by Capita not Atos. It stated I did not have depression and some other symptoms even though I deal with the mental health team and visit a psychiatrist! I have a chronically sick husband AND bechet's to deal with So I understand when you say luck isnt on your side I often feel like that. It would be handy if u say why you have been refused then I may be able to give u some pointers. APPEAL AGAIN we had to with my husband and finally after tribunal they accepted he was ill so I know how horrible the process is just dont give up! It's tough going but I would urge you to continue.

Arthritis as a cause of behcets is disabling enough without the other ulcers and erythema nodosum that go alongside. Can you get your local benefits expert at Citizen's advice to help you? we did it helped a lot. x Hope this helps any more questions just ask I will try and help if I can

[baiitboat]

Thank you for the reply sorry for the delay in mine had a busy couple of days thankyou for the advice and info defo not giving up feel very upset and angry that we have to fight for everything yet the other day i read in the paper about a young girl aged 21 which is the same age as our daughter gets £411 per month pip,£260 per fortnight ESA,her rent paid which is £135 per week and all because she has eaten far to much junk food she weights 32 stone and then had the cheek to say its the NHS who are to blame as the mum says they haven't done enough yet my husband your husband and you and all the other sufferers of chronic and lifelong illness that have to cope on a daily basis though no fault of there own x