Just to let you know (if you don't already), that there is a extra benefit that people who are on any form of Anti TNF can claim for (if you need it). It is called Direct payments of Personalised budgets, they are through social services and they are designed to help people 'live in the communtiy'. In it's basic form the benefit is for you to pay for extra care (if you need it)? but more specifically to us, you can recieve extra money to pay for a cleaner.
I recieve £30 per week to pay for a cleaner once a week to do 3 hours on my home. The idea is because with me (as with most of you i am sure), i find it ok to do the lighter cleaning jobs such as dusting, cleaning the kitchen tops, or putting bleach down the toilet etc.. but i find changing the bedding, cleaning the bath/shower, hoovering etc impossible. The Rhumy's say that catching any kind of infection is bad for us, and we have to be careful with what foods we eat, how clean our ovens are etc...
The benefit is paid into a account monthly by them and i am in charge of managing the account, social services then check my reciepts once a quarter (to check you are spending the monies in the right way).
This money is available and has helped me no end.
Just thought it might be helpful?
Ella x
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Ella32
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Thank you for putting pen to paper (as to say) about this. Not on Anti TNF yet, I have my assesment in a couple of weeks, but this is really useful to know. Is this financially tested or assesed on a person to person basis (ie depends on how bad one is?) It seems so very silly that I should be looking forward so much to a medical appointment that at the end of the day is only going to be putting me on more medication, but I have been waiting for so long.
I receive direct payments also to hire a personal assistant to help me with personal duties and a bit off cleaning.
This is not a benefit paid for people on anti tnf but for anyone unable to care fully for themselves.
And not sure if its different in your area but its boty h means and needs tested in our area as I make a very small contribution towards mine but It's so worth the help I get.
I have recieved Direct payments is both Bristol city council area and now north somerset. It has always been 'needs' tested not 'means' tested here.
Also just to add, i get extra direct payment each week to have a 'hygenic clean' ie a cleaner due purely to my ANTI TNF as taking the drug gives you stats like "if you were to contract a severe infection you have a 1 in 10 chance of getting rid of it etc...." This is in addition to the monies direct payments give me for a 'PA' in my case care if needed.
Just thought the info might interest some people as i have found that help invaliable.
Do check it out, but make sure you state about the infection risks with Anti TNF, It covers 'oven cleaning', 'carpet cleaning' and deep house hold cleaning' for me
Good luck
Ella x
hello, that's soooo helpful! but like Cathy I wonder if we qualify in Scotland, I've tried to find a link for it but without any luck.
Cathy, I'll let you know as I'm planning phoning the social work dept tomorrow, is that who I should contact Ella?
Yes it is very helpful. The allowence is to help YOU do the jobs you can no longer do. It can also help meet targets such as 'feel more socially included' ie going to groups etc...
As with the others when you get assessed you will need to stress the side effects of Anti TNF and the need for you to keep infection free. As i said in the begining it is to help you live in the community.
Good luck
Ella x
hi ella,
Sorry if I offended you I was just trying to point out that this benefit is also available to others who may not be taking anti tnf treatment as I wasn't when I was first awarded them.
I will phone my social worker tomorrow and ask if I can get any extra help because off the anti tnf , thanks for the advise.
Not sure if the direct payments rules change about being means tested due to the anti tnf also but I can assure you both me and a friend I have in Wales have been means tested after we were needs tested my friend didn't need to contribute, I did but It's only a small amount and totally worthwhile.
Again sorry if I offended you but it was totally not meant that way.
of course you didn't offend me I'm really glad you are already on DP and i hope you can get some extra cash for the cleaner. You are right that they see if you need to make a contribution, but it is not affected by a 'partners' income. Rare in the world of benefits
Ella xx
Here's a link with advice on how to go about it for all who are interested (hope it works I'm on.my phone)
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