Work Support Group

Hi I was wondering if someone could help me.

I recently won my ESA appeal apparently even though I never even went to an appeal or got any word of a date for it till after it.

I have been put in the work support group and now some company called Ingeo are contacting me about a work activity group. From what I read on their letters so far is very contradictory because it says they wont force you into finding a job etc but it says if you dont participate they can sanction your benefits!?

I am more ill than I was a few months ago and am more or less housebound now. I have been out once in the last 4 months and that was to the doctors.

I am currently receiving the full ESA rate and lowest rate care DLA and now have a claim in because my 17 year old daughter has recently finally got a diagnosis for the same condition I have Ehlers Danlos Syndrome. She is also getting worse and we are hoping to get a decent amount of DLA for her as she also is getting worse and had to give up college last term because she was too ill to cope.

I am hoping or thinking at least that if she did get DLA then I might be able to claim income support and carers allowance although I am really sick myself. Both of us are ill and barely coping helping each other out but I cant expect her to help me out the way she was because its not helping her condition either.

Im not sure what I should be claiming or what I should be doing but I know I have no chance of being able to hold a job down. Id be lucky to manage half a day a week becuase of my condition. I already am in pain 24/7 and my joints constantly sublux (partially dislocate) which gets worse all the time as every sublux just makes the connective tissue, tendons, ligaments and muscles weaker. So far this condition has affected every joint in my body althoguh it started out mostly in my hands/arms/wrists.

We even struggle to get proper medical treatment which is basically conditon management because there is no cure and there is a lack of research and understanding by the medical community too!

Any help or info would be greatly appreciated.

If you have been put in the work-related activity group, then you can be required to engage in work-related activity. An example of this would be going on a course to learn how to improve your chances of finding work. If you do not engage in the work-related activity required of you, your benefits can be sanctioned, i.e. reduced or removed.

However, you are not required to apply for work while you are in the WRAG.

The service provider should be making adjustments for your disabilities in determining what work-related activity is appropriate.

How can they determine what is appropriate for my condition though.

It has already taken me 2-3 years to get a diagnosis for me and my daughter and we need further elaboration on our diagnosis. I am waiting for an MRI scan and am also having to try and get an appointment in ULCH in London because there is only one clinic and as far as I know one expert who knows about our condition. I am on lots of medication and also have CFS, fibromyalgia and also dysautonomia. My daughter has all the same conditions too and we are struggling to get basic medical treatment.

Its a nightmare.

Im just worried sick what will happen as I might not even be able to make any of these appointments. I could wake up one day and be ok enough to manage to get out the house or I could be so bad that I cant even get up which is a regular thing. I am not going to be better in 3 months because there is no cure and things are basically only going to get worse. I know the current research on Ehlers Danlos Syndrome doesnt say its progressive but I know lots of people with it including myself who are and have got progressively worse. There is no remission and there arent really relapses or bad spells. Once the joints and other affected tissure are affected they are basically permenantly damaged.

Im just worried because I have no support and myself and my daughter are essentially carers to each other as and when we are physically able to.

Hi there
It sounds to me like you should be in the Support Group and also get High Rate Mobility as well as care. Your daughter appears to be going the same way too. There is a support group for EDS which is very good and has a lot of up to date information on the condition. Identify which type of EDS you and your daughter have and swat up on the symptoms so you can correctly describe your problems using the B&W guides to get all the benefits you are entitled to. Hopefully you will be under a consultant who knows what he is dealing with, a HCP would be lucky to meet an EDS sufferer in his lifetime so you may have to travel to see an expert.
Kindest Regards
Peter

Thanks both for your replies they have been very helpful!! I should get it deferred and yeah we both should be on high rate for DLA. I only recently subscribed and have already found the info from B&W brilliant, certainly a lot better than any other info out there!

Thanks again. I feel a bit less panicky now. Whats an HPC sorry not familiar with that one! Our own GPs arent a whole lot of help as they know so little which is fair enough but the main GP said theres no way I had EDS in the first place and is reluctant to listen to anything I say, the other two arent so bad but again limited knowledge. I am trying to get more info as I am pretty sure I have VEDS and if I have then theres a good chance my daughter has the same type and we both have all the signs. Thanks for the info on the support groups am already part of the EDS community which in medical terms has been a lifesaver although the whole benefits system is just so confusing these days.

Thanks again!!