I have never felt lower. I have waited over a year for the DWP to set a date for my tribunal, still no news. Last Christmas week, they announced that I would loose part of my benefit and await a tribunal to decide my fate. This Xmas week they have completely scrapped my benefit due to the fact that my tribunal process has taken so long, even though they are the ones who have delayed. My daughter and I are now surviving on her child tax credit and child benefit. Baked beans on toast again this Christmas day I think. I feel unable to work as my symptoms are wide ranging and unpredictable. I was also turned down for DLA this week on the grounds that I was (not dizzy enough) !! and they based their decision on the DWP's findings that I am debating. They suggested I take their decision to a tribunal !!!! If only I had any strength left to do that !!! My GP and MP have supported my case wholeheartedly, but their pleas have fallen on deaf ground. The same support was not given at St Thomas as I was not their patient until 3 months later than the DWP medical. My welfare officer does not answer my phone calls, the CAB in my town don't answer their phones. I feel too unwell to go to their offices. I can understand the DWP throwing me into a pit, but my daughter surely should be cared for better than this. I fear for our future, but am too tired now to do any more fighting..I submit to our fate..it's not looking good ! Please don't think that I have written here just to feel sorry for myself. I am courageous to use our case as an example of how the DWP are treating sufferers of auto immune diseases and their children in our country. It is quite remarkable, I am simply highlighting a case. I guess in older days it would have been down to the workhouse for the two of us, I seem to be spared that at least. I am indeed lucky to have such a lovely daughter and I count my blessings for her every day. Thank you for reading my blog and I hope that no one else has reached my predicament.
DWP tribunal: I have never felt lower... - Hughes Syndrome A...
DWP tribunal
Hi there, I am so sorry you have having such a very terrible time... I know you are having the support of your MP and GP, but I do suggest that you print out a copy of this and give it to them, it might rev them up a bit to take things a bit further for you. Perhaps you GP could contact St Thomas re the lack of support for the DWP and please forward everything by recorded delivery to the Health Select Committee... I can find names and contacts if you feel to tired to do this. As a last resort you may have to go to the media, locally. You have obvious support from those that are trying to help you. I am downright furious on your behalf! Mary F x
Hi rhian start shouting human rights to your local rag or national papers , as that is wot i am going to be doing if they dont give me back my money and my right to be ill in peace!! also try getting a credit card ,,what is wrong with these people (if they go to a doctor and he gives them medication and a diagnosis they would take it on board and go get there meds so why wen my doctor gives them a sick note for me they dismiss him as a doctor and undermine him basically call him a liar ), !! why are they still doctors, surely they to must be questioned (not getting at doctors) but according to the goverment they dont know there job so wen are they gonna stand up and say something, i am living off a credit card and bank loan have done for years which will soon run out i will then have bailiffs to deal with. how nice a safe friendly goverment we have , lies lies lies i hate these people and wish they could swap for my health as i would love to earn a real living and then watch them suffer like we have to , rant over
I'm so sorry for your predicament. NOBODY should be made to feel like this. Ditto to what MaryF and APsnotFab have said. Certainly try and get your local press or TV involved. Please don't give up now - after all you mustn't let them win. Try and keep as positive as you possibly can. When you are so exhausted I know it's so hard to do but think of the long term benefits for you and your daughter and for those who are unable to fight for whatever reason. Good luck and do try and keep us all posted. Love and hugs from InSpain xxx
I am very upset to read your post, nobody should be placed in this predicament and it is utterly unfair that you are being forced to live on fresh air and baked beans. I can only echo the comments above as i have no knowledge on how the system works. 
We all need to shout about it not leave to others. Twitter, Facebook, local MP, our local paper, local radio, anyoneand anyone else we can think of . Without some support it will just be another statistic. Please dont walk by on the other side, you all obviously care well make sure others have the chance also to care please. Very best wishes to all Andrew
May I sugest this may help .....please read it may be your salvation, though I cant promise.
Best A.
May be contact them I dont know but looks good!
Pleasae cut and past this into browser on computer and may be it will surprise you it id me and they can be contacted. Best Andrew
blacktrianglecampaign.org/2...
If you need document but cant use a browser I can send it to you as email attachment or to a friend :)Let me know A
Thank you, I will give this a try and go see my Dr with he forms !
Good luck and may justice be yours. Black Triangle have legal team if needed.Read all the notes and whole site worth a look.
I owe you a massive thank you
I am really distressed to hear this Rhian.
It would appear that yet again it is the sick and vulnerable that are being targeted and this time it is you.
I hope you can muster up the energy to keep fighting. I won't presume to give any advise as I think most of your options have been mentioned by friends already.
Is there any way that we can put a letter of support together from all on the forum and present it to No. 10 and the newspapers?
This issue affects us all and we need to help.
Thinking of you Lots of Love Sue
Thank you all for your amazing support and trouble to comment, I have contacted my MP again and am really grateful for your words and browsers of help. I will print this out and send to my MP...after fighting them for over a year however I feel one little voice will not win this injustice. Taking on this government with the media is just too challenging and if I do it I fear I will be used as a scapegoat for them to prove the fact that I am able bodied on a good day (when I could walk unaided say to the bus stop) and ignore what happens to me on bad days (When I cant move a muscle to leave my bed). It seems incredible even to me that I was able to attend the clinic in St Thomas on one day but not even the bathroom in my home on another. Such is the diversity of this illness. I guess they'll just argue that If I was able to go to London I'm able to work ! And this is the injustice as we are not lying when we say how diverse our symptoms are and that they can often take us by surprise and completely disable us for weeks, yet trick everyone into thinking were fine on our good days !!! We are unreliable to potential employers and my illnesses are not controlled...thank you everyone I really value your thoughts xxx
Hi Rhian i am so very sorry to hear about your predicument - all the stress this must be adding to you at a time when you should be resting and recovering! I hope you have family support to help campaign on your behalf and can offer financial support.
Cant think of anything to add that others have not already mentioned but i am happy to sign any petition or write letter in support of you receiving monies you are entitled too! damn this government its about time they took more from the rich and wealthy! there are different ways they could recoup money but as usual they prey on those not in a good position to fight back and they know wont be able to get work whilst the government pay billions in protecting those locked in our prisons and jump as soon as they mention their human rights are being ignored! i get so infuriated!
my rants not helping you tho 
so sending you big hugs and wishes for a brighter 2013 for both you and your daughter - keep fighting you seem very determined & a survivor! xx
kathy xx
Hi There is a major petition to stop the appaling problems people are having. Please go to
WOWpetition.com. or see #WOWpetition on twitter. Looking for 100000 sigs for parliment debate!
you must not give up i have hundreds of sad stories, the goverments barbaric, cruel attack, is aimed at us that have no voice, there is no one big enougth, to stand up on behalf of us, elderly are right now freezing or hungry, having had vital social care taken away, hundreds of sick and disabled people, have already taken their own lifes, loads have died suddenly after being told their benefits have been taken away, the rise in heating and food, and a drop in benefits, more and more homeless, unable to kjeep up with charges imposed on them, lets not forget the youth, there is nothing for them, the goverment has taken away, hope, there has to be some one out there, someone with a HEART, the situation is now desperate, the attack on vulnerable people, being used as scapegoats, for the bankers, etc, we have no one, but we have each other, thousands upon thousands have signed the petition, IMAGINE, THE IMPACT, if thousands surrounded the houses of parliament, may be then, t.v news and newspapers, will show the real plight, with out fear. to top all the attacks, he now wants vouchers to replace money, for the less fortunate, this man is a control freak, WAKE UP BRITAIN. the organisations, that once gave us a voice, have turned away from us, because thousands of disabled peoplke, thrown of benefits, will be forced to work for them, we have to make a stand, we just need someone TO MAKE THAT HAPPEN !!!! THANKYOU ANDREW THE CARER, IV SIGNED THE PETITION, AND WILL NOW CONTACT BLACK TRIANGLE. KATHIE
I notice there are just over 4,000 signatures on the above e-mail. i think it is very important for this issue to be discussed and it affects us all so please sighn.
thank you for bringing it to our attention Andrew
I have just signed thank you for raising its profile kathy
Hi Rhian, I am totally appalled and horrified by what you have been put through so far. I foresee myself and so many other Hughes Syndrome / associated illness sufferers ending up in the same situation sooner or later unless something is done about this.
Keep your chin up and keep fighting for your rights, it's the only way.
Thank you AndrewTheCarer for the link, I have signed it and will pass it on to my CMH hospital forum group! I'm pleased to see that the goals of the petition are exactly what I've been banging on about to anyone who cared to listen.
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