Sticky Blood-Hughes Syndrome Support
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An update on my DLA appeal

My file went to a nurse ao thw DWP could review my claim..... this is what the nurse said after reviewing my 100 pages of medical and photographic evidence

I have reviewed the files and the consultant letter confirms this female has Antiphospholipid Syndrome, bilateral long vein thrombosis, bilateral popleteal artery occlusion, previous pulmonary embolism, abdominal thrombosis. occlusion of the coeliac artery, occluded right renal artery, Hypertension, Thoracic outlet syndrome, previous bowel surgery, previous cholecytemony, gastroparesis, and right hand trochanteric bursitis. She is under the care ofa gastroentolgist, immunologist, vascular consultant, rheumatologist and a specialist for antiphospholipid syndrome. She takes strong pain killers and blood thinning therapy.Brain scans showed some high signal lesions. Her work has made reasonable adjustments. She uses a stick to walk and has been referred to physiotherapy. Overall the evidence suggests that she should (then crossed it out and put does) have funcyional restrictions. However the consition is variable and if she takes care the majority of the time she can self care and be able to walk reasonable distances

All I can say is ????? ...... They have no idea at all the report went back to the DWP and they say recent evidence suggests I have improved so I need less help than before. So cut a long story short...... Tribunal here we come. The papers have been submitted so Im just awiating a date and me and my disability officer will put them right,

I feel like crying sorry to be pathetic but what upsets me is that the quality of my life is going downhill not better and thats bad enough to accept without them saying I have improved. Even my anticougulant nures wrote a letter saying my condition wont improve

22 Replies

Oh dear. I am sorry, it should not be like this. These institutions are sent to try us, literally, make sure you spend time with decent friends and family to cheer you up. Mary F x


Keep on fighting for what you are rightly entitled to, i know first hand how hard it is, we just have to stay strong, gud to see you have support from disability officer. The DWP has no idea how this illness affects us and the Goverment only are only thinking about saving money, not about what they are doing to the sick, disabled and already vunerable people. Good Luck keep us updated xx


Thanks guys i am normally very positive and i have won my last two tribunals its just so exhausting constantly having to fight when I'm getting worse I can't understand that the nurse could not see the impact of everything she confirmed I had .


I'm speechless. She noted all that but concludes . . . you're better? As in long term better?

Hang in there.


I know its no consolation but 40% of claims go to appeal and 50% are successful, so you have a very good chance - Don't give up!

Its awful that so many people are being made to fight for what is obviously wrong decisions and the stress and toil that it takes out of you and them getting what is rightfully yours. This costs the tax payer £50million a year and the DWP have had to advertise for 150 new judges to try and clear the backlog of cases. You would think wouldn't you that the people that matter would see the system for what it is and do something about it because clearly its not working.

I almost hate to admit (after reading your story) that I have just had mine renewed, again with 5 incurable conditions and a Stroke. Mine was only renewed for 2 years because they said that, "How much help you will need then is uncertain"!! As if anything is likely to change when I am 64 years old!! How convenient to get a renewal just as PIP comes in!! And they say that decisions are based on health grounds and not political reasons!!

I am so sorry for you but if there is anything I can do to help. I am assuming this was the reconsideration decision? If you need any of the B&W guides please just ask.


Thanks everyone you all make me stronger.Yes this was the revision decision so tribunal here i come.I have done two tribunals so far i won the first all by my self.For the second i enlisted a disability officer because i was mentally tired. I have a disability officer this time too.


I am sorry to hear what is going on these people do not make life easy, we all here for you if you need anything



Remember "Little Victories, Little Victories" Nelson won in the end!.... Dont give in!


Warning: politics ahead!

So here in the US we must: 1, find a specialist who knows about our ailment, trusts the patients to be truthful, and keeps up with latest treatment options; 2, win the insurance gods' lottery and find that your long-term chronic ailment is indeed covered by your employer's insurance plan OR (alternate step 2) be a kazillionaire, or literally win the lottery to pay your medical bills.

Whereas in the UK (correct me if I'm wrong:) You still have to do 1 (which can involve more hassle as, apparently, you can only visit certain docs -- but then again, Dr. Hughes is not far away,) but option 2 involves arguing NIH into accepting the long-term ramifications of having APS.

Seems like in the US if you have won that insurance lottery game and you or your spouse works for an employer who offers a great insurance plan OR you're a kazillionare then US health care works well for you. However, if your insurance plan is not-so-good, or if the primary insurance beneficiary looses his/her job, or you're not a kazillionaire then you must win the lottery, or limit your treatments to "acute" presentations at the ER. (An ER nurse friend will forever be haunted by the woman of the laid-off miner -- who therefore had lost insurance coverage -- who did/could not get her breast cancer treated until she came in with gangrenous breasts. Only then was it an "acute" presentation. She died. )

At least in the UK you have the option or arguing your way into getting NIH to cover you. Good luck to all my American counterparts trying to argue their insurance companies into paying for a procedure the insurance company thinks they can weasel out of (did you know insurance companies pay people full time jobs to troll through claims looking for excuses to deny benefits?)

Then there is my experience: here in West (by God) Virginia the docs knowledgable about APS are few and far between. Enter my insurance company to the rescue as their advisory nurse realizes that treating me early equals treating me most cheaply.


Anyone similarly fascinated with the various ways our planet administers health care my recommended reading is "The Healing of America" by T. R. Reid. Reid was a journalist who was stationed, at various times, all over the world. He had a (if my memory is accurate) shoulder injury and he consulted docs all over the planet for their advice. These various consultations he incorporated into chapters comparing the health care offered in France, Germany, Japan, UK, Canada, US and India(?) Fascinating. No one does it perfectly -- there are pluses and minuses to every system.

Hang in there with your appeal.


I'm sorry to hear about i all, I really dont get where they get their conclusions from most of the time!!

At the mo' I get DLA....but I'm too worried that when it's reviewed I may not get it again :(

The thing is...yes I'm in pain all the time but I'm such a stuborn 'bitch' ( I know I am!) I usually just try to get on with everything......but I know I'll pay for it over the next few days! :( I'm aware of this & also going to my gym has helped me so much, as I couldnt even walk from one room to the next without help in the beginning until I pushed myself at a gym (in pain) & now I'm where I am today.....I can get from a-b, lead an ok life, suffer later but I adjust from one day to the if they stop my DLA.....I wont be able to go to the gym anymore as I cant afford it without it! so I'll end up going back to square one...& that scares me a lot :(

Keep your fight going & win that appeal so the rest of us may also stand a chance too as it will probably be us next!!

All the best, Sue xx


This makes me extremely annoyed. It what way is a nurse qualified to overule a consultant?

This affects us all, I am just embarking on the DLA route with the recommendation of Prof. Khamashta who says he will sign anything that needs to be signed. I am going to fill form in at CAB but if I'm honest I don't fancy my chances of success.

Have they actually turned you down yet? I hope not.

I would like to have DLA so I can get someone to help with with the everyday tasks that I find virtually impossible.

We are all with you and understand how you may be despondant but we are all here to support to and care.

xx Sue


Sue if you want the guides to fill out the forms for DLA if you PM me with your email address I will send them to you.


Hi, Im just in the process of filling in a dla from, but dont think i have a chance. I have aps and have had 10 in the last 6 months. My email address is would be really gratful for some tips on how to fill the form in.


Suzy I will never stop fighting I've won two already here's hoping for a third .Thenext thing we will all have to fight as stated above is PIP. in years to come people will understand this illness far better than they do today.I still can't believe that very few websites talk about pain fatigue and stiff joints.


Good for you hun :) keep going, if you need any boots to kick some butts you know I have plenty :)

I know about the lack of knowledge only too well......if we all do our never know x


Hi I was awarded DLA in October of last year after fifteen months of fighting for it and attending a tribunal, obviously I was really happy that they could see how much pain I suffered and I was having a particularly bad day with my mobility, what I dont get with the system is they obviously dont read the application forms properly they refused me twice during that fifteen months saying that I could walk furthur than I could even though I told them exactly how far I could walk without having to stop no one came out to see me and walk with me where do they get off making these assumptions about people. I had also applied on three previous occassions and had been turned down and just gave up. I reapplied every time my conditions got worse and this time I pursued it and it paid off so just hang in there and keep fighting the tribunal panel are made up of a solicitor (usually the chairperson) a GP and a community care manager in my case they were extremely nice and put up with my blubbing all over the place. Good luck with it


Thanks Alison ive cried at each tribunalsmust help thoughalthough thats not why i cry its just do mentally exhausting when your ill.


TJ, This won't be much help to you, but I'm appalled at the nurse's report and seeming lack of understanding of what you have to endure, both physically and mentally. I'm new to Hughes Syndrome, and to this website, and can't offer you much in any practical sense, but I'm thinking of you and rooting for you.


Welcome to the site, Im sorry to hear you are new to Hughes but you will find support and friendship here.

Look forward to bumping into you again soon if you have any questions or concerns we can help you with.


Physio wrote me an excellent letter for my tribunal


Reading about this makes my blood boil. I do hope that anyone involved as a claimant does seek help. I used to work for the CAB (but couldn't keep up with it in the end) but know that there are people out there who can help and for free. I know there are not enough but people, please do look around and use what help might be available.

And good luck.


Thanks TI'm it makes my blood boil but not just for me but the many who will not fight or can't fight.


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