I attended my dla hearing yesterday and need to rant how very intimidating it was, I hated it, very intrusive, out of the 3 on the panel the Doctor was the nicest but the other two were really judgemental, with their face twitching and eye brow raising as I answered their questions.......................................................................................................................
I'm a pretty confident person but they made me feel sooooooooooooooo small and inadequate as though I am nothing.
Very humiliating, I came home and cried, felt sad all day and made to feel like a liar........................ They will write to me shortly but I don't hold out much hope, i'm on lower care rate and have appealed this decision since the beginning of this year - obviously i'd like additional funds but I can't work because of my illness and want only what I believe i'm entitled to. That said from this I have learned that if given this opportunity again I would be very defensive ask why they judge me financially coz I have a car that I tax, mot and insure but only use for appointments and emergencies with the face twitching and eyebrow raising - this is not means tested and she had no right to do that, but if I get given another chance I would be ready to battle................................................................
Ive ranted now and apologise to those who are about to be assessed but should your judges make you feel the same way then tell them at your ending statement..................................... love and light to all who suffer xx
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beckybooboo
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Am sorry to hear about your ordeal.......I had a good RANT on this site yesterday, mine was really just about 'ignorant people' or person..but I can understand yours more-as this could affect your whole future well-being-MONEY really is important, and it is so stressful when we just don't have enough, let alone all the pain/misery we have to cope with anyway, and of course the stress of it adds to that anyway-it is just a vicious circle.
I am off sick from work at the moment with a flare due to having to stop taking meds-and really do not know what the future holds for me financially......I am now only working part-time too, and even just adjusting to that drop in money has been really hard...Life is Hard-and I think all of us 'luppies' deserve a medal for attending the school of 'HARD KNOCKS'!!! Just sometimes I would like the 'doubters' of this world to 'walk in our shoes'.....just for a day-and see how hard it is to just do normal things-like putting the kettle on without any pain-opening a door without feeling as you turn the handle that an invisible ghost is giving you a 'chinese burn'-walk up the stairs without wondering if the next step is going to be the one that shoots pain up through your knee to your groin-I could go on and on, as I am sure all of us could.....Just let them try-just for one day...then see how they 'doubt'. Sorry I am now ranting FOR you!!!.(Probably knowing that I may be facing this board of 'doubters' myself at sometime in the future!)..Try and stay positive and in the meantime-Big hugs xxxxx
Been there. The most awful, totally-humiliating experience of my life. Doctor on the panel at one stage said if I was so unwell perhaps he should inform DVLA and have my driving licence revoked! I was treated as a liar from the moment I entered the room so you have my deepest sympathy. However, hopeless though it now seems, please don't give up. Wait 3 months then apply again and submit an OT Report as I suggested on the other thread.
A member of the panel (Not the Doctor) did report me to the DVLA about me driving, although I had it in writing from my doctors and consultants that I was fit to drive. I also have another condition and use crutches to walk and sometimes a wheelchair. I too was made out to be a liar and put in an official complaint about my treatment.
I think it's really awful that you were made to feel intimidated and what sounds like a malingerer, this illness is so difficult for people to understand without professionals making sweeping judgements. They should understand that all too often a car is someone's lifeline, and as you said it's not for them to judge your material assets. If I were you I should appeal (as I said on the other thread) use supporting letters if you can to help. My consultant was incredibly helpful and supported me fully both for state benefits and to become medically retired from my employment (as a really young age of 45 too)!
Try speaking to your consultant and asking their views on your symptoms and future prognosis and if they would be wiling to evidence this in writing.
With respect, the bottom line is blood test results, letters from consultants and/or GPs won't carry any evidential weight with DLA assessments or at Tribunal because these medical professionals have not assessed us in our homes nor witnessed our disablities, nor discussed how they affect our activities of daily life in minute detail. Only OTs are qualified to do this and I say again DWP find it almost impossible to argue with OT Reports. They will visit around 3 times in general before reporting and investigate everything from how far you can comfortably walk to whether you can make a cup of tea. After DLA refusals and losing at Tribunal they really are your last hope for reversing decisions.
it makes me sickto hear you ladys i used to be confident had a great job , suited and booted but alia lupy soon put paid to that and i fought tribunal after tribuanl the first one asked who paints my nails !!!!! but i won , i sent them a total of 121 item/letters/results/copy of blood results/research from internet /pages from lupus websites and finally last year won high mobility middle care finaly got recognision .. i didnt have an o.t, report as apparently have lupus/fibro/raynaulds/syjorns/cfs/emphazema/copd does warrant a visit hope ive helped
Hi, it's just shocking what you have been through. They are not there to scaremonger genuine people. It frightens off applying. Yes we might be able to function better on our meds....but everyday brings uncertainty, we run out of energy easily and everything has to be paced. If this is not a change of life/debilitating in itself then what is? That is without the day to day myriad of symptoms of brain fog, aches/pains/chances of flare ups, lack of energy. One of the things I wonder if Lupus UK could do would be to 'train' a few of us lupies throughout the country to act as advocates for these boards. I would be happy to do so in Yorkshire. It means we meet up with whoever needs help at an appeal, take information from lupus UK, talk about what symptoms the person appealing has and how this affects them on a daily basis. To talk about the toxicity of the meds and how this is a battle in itself. If twenty or thirty people were trained up and down the country then we are forming our own committee to help each other. We would be united with the name of a LUPUS UK advocate label which would help us to feel stronger to 'fight' these appeal processes. I might suggest this in a message to Lupus UK. I really hope you guys fight this ......do they think that we would rather live this life this way? Personally I'd rather be back doing the job on a daily basis that I trained hard for, was good at and actually enjoyed. It gave me money, independence, a pride, an identity, and allowed me to help vulnerable people. I wish there was something that I could do to help each and everyone of us in this situation. Sorry for the rant xx
I trained with CAB in the early 90s to help Lupus UK members with claims and later as a counsellor. I was then an area "Contact" for Lupus UK in Sussex and, actually, still am loosely but need to complete yet another 4 day residential course before my details can appear on the website - problem is I've been too sick/disabled thus far to attend the course or organise any group activities. If there's funding for your area (which basically means someone needs to fundraise unless Lupus UK will defray fees) I'm sure Paul will support anyone who would like to become an advocate Mstr. The best people to train with now are benefitsandwork.co.uk. They run several courses, some of which are one-day - have a look on their website. Anyway ... good for you Kittycat! Glad you got there in the end. However, with an OT Report you would have had your award immediately with far less stress. I learned this the hard way. The main problem DWP has with disability awards for lupus is it's widely held to be a "relapsing/remitting" disease and therefore believed we all have periods of time when we're completely well and fit to work. This is generally not the case for the majority but they habitually employ this "assumption" to deny benefits IME and therein lies the problem. Yes, of course we mention some of our disabilities, pain etc. to GPs and consultants but these people never personally witness/assess how we cope (or not) in our own homes on a daily basis with the activities of daily living. That's the only criteria that holds weight with DWP. I say again only Occupational Therapists are professionally qualified/recognised by DWP to assess this - usually over 3 or 4 hour-long visits to our homes. As a bonus, you may well find you're entitled to a range of free disability equipment from Social Services.
Wow! What a fantastic idea mstr. i too would love to go back to working full time in the job I love. As it is I struggle to work 3 days which makes it stressful. With the symptoms I now have it makes me feel useless but I can't give up as financially I would not cope. I also get pride and identity from my job role .I'm to scared to apply for benefits as I haven't got the strength to fight on my own. I really grieve for the capable person I was. I do realise I am luckier than some of us, but it's always in the back of my mind things may get worse. Anyway good luck with this fantastic idea.xxx
Hi, thank you. Of course it all depends on how we are ourselves at the time and if I volunteer and then have a flare up that is the difficulty itself and how our lupus progresses. The idea is there though....to train those of us who understand. You can tell from this site how many of us have had good careers before this took hold and have so many strengths to offer. On reflection though what do we do if we have brain fog/the condition deterorates. I know we can use the CAB but they may be very busy so I'm not sure how easy this is to do. Yes we could get an OT assessment but again some days are better than others. An OT who visited one day could see that with appropriate meds you can still function.......but we have to constantly pace ourselves to do tasks. Most people do not have to set small targets each day because we know 'a normal' day would set us back. Yes we can function but most tasks have to be broken down throughout the week. I'm rambling....but these are the realities of life with lupus
I think you'll find OTs knowledgeable (IME more so than GPs) and sympathetic to the condition and able to form a really fair assessment of one's capabilities overall ... which is why they make 3 or 4 visits over a period of time and interview patients in great depth. In 20+ years I've not known anyone genuinely entitled to benefits denied them having submitted an OT report. Fact.
So far as advocacy is concerned, no-one would expect you to help others during periods of severe illness. After all, we're all in the same boat and therefore understand how things go. As and when is fine. So far as I know CAB no longer run courses for anyone other than those prepared to work for them.
Thanks for that information. I certainly don't doubt the capabilities of an OT as I did many referrals to them in my previous role, I was just simply thinking out loud about the possibility of advocacy. It may be a crap idea....but I'm just pleased that I have them occasionally xx
Yeh, I get that MSTR but Lupus UK always has had and I'm sure would welcome more advocates. However, as mentioned, before you can formally appear as one on the LUK website now you need to attend a 4 day residential course which is run in Summer. I've not yet been well enough to go but maybe next year ... Paul at Head Office would be the one to talk to re. this. But not attending that course doesn't preclude you attending the Benefits&Work courses and being able to help people with benefits' queries via this forum. They have one day courses coming up in March in London and Manchester. Alternatively simply join B&W. That will at least keep you up to date with the latest developments/news re. the disability benefits' shambles. You really can learn a great deal from their website and newsletters.
Hi Tigerlily4, just to clarify, it is a 2 day residential course in Warwick. At present we are keeping it in Warwick until all our existing contacts have completed the course, but there may be opportunities in the future for those unable to travel to still do a course.
Thanks Paul - my bad! 2 days is better. Think I must have subconsciously added another 2 days for travelling as Warwick is such a long way from the south coast. Would really appreciate the opportunity to complete it without such long, excruciatingly-painful journeys for my spine - although I'm sure I'd gain far more attending with others and am sad I've not been able to manage it. Do please let me know.
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xx
Feeling awful after PIP Tribunal 
So do we have any positive stories about living with Lupus or do we communicate on these sites to share our woes?
Tribunal
Magic word "remission"
