Hello again, I just would like to know if anyone is/has been in my situation. I was diagnosed with antiphospholipid syndrome 15 years ago and since that time because I could not work due to my illness I was put on Inapacity Benefit. The Government is cutting down on all benefits and because I stupidly did not read the form I was sent properly I was no longer entitled to this benefit so instead they have put me on ESA (EMPLOYMENT & SUPPORT ALLOWANCE) which means that you are only entitled to have this for one year and this is coming to any end in July. I am sick with worry as this money kept my going, not for anything extravagant but just household bills etc. I have phoned the benefit department and they say that I am not entitled to have anything else, unless I can prove that I am either disabled and need a carer, which thankfully I do not. Does anyone know of anything I can get to replace the old Incapacity Benefit, even if the money is less as I don't know if I can work as some days I can't even get out of bed as I feel so bad, other days I feel quite well but you can't guarantee which days these can be. If anyone out there knows anything, I would be so grateful, please reply to my request as the months just seem to fly by and July is looming with fear. How do they expect people to live if you can't find suitable work for our needs. Health and young people don't seem to get much luck let alone someone like us. If someone out there could help I would like to hear from you.
INCAPACITY BENEFIT STOPPED. - Hughes Syndrome A...
INCAPACITY BENEFIT STOPPED.
Hi Julieanne, I think you might find all my blogs of interest, good luck x
Everyone is being taken off Incapacity Benefit and put on ESA either Work Related Activity Group or Support group. Did you fill in a new form for ESA and did you have to go to medical assessment. You can only appeal upto one month after notification of which group youve been put in. x
Yes, I have been for medical assessment in the past. When I received the form I obviously did not read it properly as if I had I might not be in the predictament. I tried to phone the benefit department but could not get through on numerous times, so in the end I just gave up and hoped for the best, which backfired on me. The month had gone by this is when I noticed that I was too late to appeal, I was called to the Job Centre and this is where I found out that the my money would be stopping in July 2013, which was a huge shock as I had not realized the full implication of the letter I received. I was put on the Work Related Activity group but I was not told to go for any assessment from an indpendent doctor like I had in the past. Is there anything I can do or get instead of this benefit, even job seekers allowance as I don't know how these things work. Do you know of anything?? I would appreciate anybody's help in this matter.
Thanking you all for your help.
Phone job centre and ask them to get another claim form sent to you for employment support allowance. Then once you have the form go through it very carefully, consider each question in the sense of how you would cope in a work situation in particular, give examples based on your own experiences rather than general statements. Get advice from CAB on filling it in. Do not ignore the form.
Best thing you can do is request an assessment by a,health work and have your own medial support is to wtite a report for them to read.
Not sure what you can do maybe try a new application for ESA. I hope you manage to sort things out
Have a look at the Benefits and Work website. There is a charge to join, they have an online forum. Perhpas others on this forum have used them and you can get some feedback - Maddie
You need to contact your local welfare rights or citizens advice. You will need help to sort this and good luck. My tribunal is this coming Friday.
I too am in this same predicament. I have just been taken off of ESA, but have appealed, they tried to tell me I appealed to late, but I did not. I have APS, a PFO and also suffer with constant migraines, that I am awaiting the Botox treatment (32 injections in the brain) and they expect me to work, some days I can not even get out of bed. Along with this I suffer with depression, it's a no wonder tho. I suggest your welfare office and Citizen advise, however they really are clamping down. So frustrating, so many people get the benefit but can fiddle the system. It does not help that APS is not really known as an illness, even my doctor did not know much about it, and I had to return to him after 2 weeks so he could look it up. I wish you good luck with your case, and everyone else that is fighting there case. Sam 
x
When Contribution based ESA comes to a stop you are entitled to apply for income related ESA. This I believe is a means tested benefit. If you live on your own with no other income coming into the house then the chances are you will get it, but if you have a partner/husband or other income coming in this will be counted in the claim and may affect the amount of money (if any) you are entitled to.
You need to speak to the ESA people again and ask them to send you a claim form for income related ESA and technically this should be a smooth transaction from one to the other.
I have recently gone through this myself. I got a letter two weeks before it was due to stop and that was first warning I had got. They said they sent out a mass mail shot warning people of the new legislation the government brought out regarding only getting it for 365 days but I didnt get one. This was a new legislation brought out after I was awarded my ESA and didnt know anything about it.
I got my local MP involved as I too panicked that I would have alot less money coming in and was worried not only about how I would cope until they sorted it out but also angry at the fact that I was not clearly made aware of it all..
So basically, if your single and on your own the chances are you will get to claim this income related ESA, however, if you have another income from another source other than work or a partner/hubby who works or brings in a source of income I dont think you will be entitled..
I hope this helps
You need to go to your Citizens Advice Bureaux (CAB), You will probably have to make an appointment, but there advice is both good and free. They will help you through the minefield of the DWP & ESA. Have you appealed your decision or asked for the decision to be re examined ? If you have not, then your CAB will be able to help with this too.
I went through this myself last year. It was a worrying time, but the CAB where marvellous and got it all sorted out in my favour after being originally denied.
So Good Luck and I hope that this helps.
PS. The other thing that you should do is get as many of your Doctors to write letters in support of your claim. Some will not, but most will and this will also strengthen your case.
What a worry for you, can you not appeal or go to the law centre ? Your not alone many have had there benifits stopped and it is so hard to fight for your rights when your so unwell.
The worry of this will not help your health and you need support to prove your not fit for work. Do you have a good Gp or consultant that you can speak to ?
Gp & consultants letters are a must..... when poorly take pics of yourself with a mobile phone if you are able for evidence, i have found this helpful at both my Gps and consultation.
All i can do is wish you luck but i am so cross to hear your story.
I was receiving Contribution based ESA which stopped in May last year. As I have a Partner we filled in an Income based Esa claim form but because of my Partners Occupational Pension do not get any ESA but they do credit my National Insurance.
Anne is spot on with her information above!
Hello, Thank you ALL for your vast information, much appreciated. It looks like I have battle on my hands, but as so many of you have mentioned I have a husband who works full time and is on an income of £25,000 a year I doubt I would qualify for any money. I did phone CAB up, but to he honest the man there was no good, if anything useless. I remember last time I went there I had the same man and again I could of done the job better myself. I think I might have to go to another town and get myself to the CDB and see if they can help better. I am waiting to go and see a rheumatologist and my aches are getting worse, just seen my GP today and I am having full blood count to see how everything is. I know that the worry of all this is affecting me, and as time goes by and July is looming I am panacking much worse. If I could get a job, could I keep it, which I doubt as some days are horrendous. Its such a vicious cycle, even if I could get anything, which meant less money I would agree to. I have taken all your advice on board and all the information received is very much appreciated. Thank you all for your kind words and your help in this matter. I will let you know what the outcome will be. xx
Sorry you in this position which is now too common place. I hope some of the advise given above can help you get something out of a system, which should be helping you, all the best. Mary F x
one thankful thing in Canada - getting disability coverage is not has hard as Hughes patients in the UK... hope that getting this financial help in the UK will get better for you
I was diagnosed in 2001 APS after having multiple clots on the lungs,I was told by the haematologist to get a job in an office but never did and continued skilled manual work. Some times it takes me 3 days to wake up lol I thought I had angina or was having a stroke so severe was the pain I had in my upper right arm and shoulder. I'm sure my GP thought I was making it up and it made me miserable,I know I'm not experiencing phantom pain it's very real bouts of pain,some time sporadic and other times prolonged. Over the years I've had a whole range of symptoms far too many to list,on the other hand I do get on with it and force my self to do physical activity and I mean heavy duty weight training which I'm not supposed to do but I enjoy it. I pound my punch bag which isn't a good idea on warfarin but I don't want to wrap my self up in cotton wool and there are people out there with far worse conditions and illnesses than APS. Everybody copes differently and I fully appreciate that but if treated correctly with anticoagulants and painkillers you should be able to carry on with life. We're all going to croak one day so don't let APS run your life and don't get stuck in a rut as it is too easy to do so. Hope you get your financial situation sorted out but it will be a struggle as benefits are being denied to people diagnosed with cancer.
Haematologists knowledgeable about APS in Ireland (Dublin/Louth/Meath region)?
Raised intra cranial pressure
Disability Allowance
