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DLA

janeb 44 posts May 18, 2010 6:48 AM	Hi all I've just had my dla renwal letter back and I've been refused both mobility and care component. I've been getting higher rate mobility for 10 years now and low care component for the past 4 years. I filled in the forms just like I've always done and even though if anything I'm worse than last time my claim has been refused. I rang the helpline number and the person went through various questions with me and said they'd look in to it again, but, I'm not holding out much hope. Has anyone got any advice for me. I'm now worried that financially I wont be able to keep my car and without it will be virtually housebound.I had to give up my teaching job 8 years ago due to speech, sight, writing problems as well as a whole host of other everyday things, even though I tried cutting my hours I just couldn'e cope with 4 and 5 year olds every day. Any advice would be gratefully recieved Thanks Jane Last Edited on 18-May-2010 6:49 AM
polo.w 8 posts May 18, 2010 7:08 AM	i would make an appeal about the decision but i would get some one to do it for me like in shropshire we have A4U you could try them. http://www.a4u.org.uk/ Tony Last Edited on 18-May-2010 7:08 AM
sally1louiselouise 890 posts May 18, 2010 7:45 AM	Jane, Definitely appeal against this decision, and as Tony has said, get some help with it. I am not sure how the appeals procedure works, but I know when I made my application for DLA one of the independant doctors visited me at home after I had sent in the application. Good luck with your appeal. ---------- Margaret South Wales UK
Jane 36 posts May 18, 2010 8:44 AM	Dear Jane, At this stage I would suggest that you give Lee Healey a call on 01708 443352 or e-mail him at hello@benefitcheck.co.uk Lee may be able to assist you on your DLA, he is a Benefit Checker. I really hope this helps you and please do let us know how you get on. Kind regards Jane Jane Knape Office and Support Manager MGA Head Office Derby. UK.
fazer 42 posts May 18, 2010 9:38 AM	Janet. Sorry to hear about refusal. My wife has recently submitted renewal after award at appeal 2 years ago. I am strongly of the view that DWP is very hit and miss with regards to applications. Debbie was suffering from similar weakness to yourself but aggrivated by pain due to an as yet undiagnosed inflammatory athritis (rheumatologist says its there but waiting for prednisalone tapering down to see full impact) pain relieve limited due to mg. You must go to appeal :- We personally found appeal process difficult and stress impacted considerably, 2 year award was on the basis that treatment regime will hopefully have stabilised condition. Pannel did make what i took as a bit of a dig at DWP over pain issue being clearly stated within application. This time round we sought advice from DIAC who were excellent and now awaiting decision. Although it is clear that things have not moved on significantly my expectation is that it will be an appeal situation again. DLA decision makers seem unable to understand MG or impact or how it impacts on daily life. I hope you can avoid Appeal Process but if not do seek professional advice.
swoman77 101 posts May 18, 2010 1:30 PM	Good luck...I do hope you appeal. My DLA is due for renewal in September and I am already worried what might happen...if anything I need more help not less. Do keep us posted on what happens Gill
janeb 45 posts May 20, 2010 6:03 AM	Thanks everyone for your help. I've had a few rough days, I think it's all the worry. I'm going to wait and see what comes of my conversation on Monday and if the answer is still the same I'll give Lee a call, (many thanks Jane for the info.) I'll keep you posted when I know whats happening Take care Jane, Cardiff
AnnK 156 posts May 24, 2010 12:17 PM	My DLA is due for renewal in October and I usually get a renewal letter plus form to fill out at least 6 months before the renewal date, but so far I haven't received anything. I know this is slightly off thread, but as the subject matter is DLA, I just thought I'd ask if the DWP's sending out the renewal forms later than they used to, i.e. in forum members' experience? I was wondering whether they were waiting for the change of Government before contacting claimants...just a thought. Thanks Ann
Rita 184 posts May 25, 2010 7:35 AM	For anyone living in the Southwest there is a new neuromuscular network that employs advisors to help with benefits. You must live in Cornwall, Devon, Dorset, Somerset, Bristol, Gloucestershire or Wiltshire to obtain the help. This is a free service
janeb 46 posts Jun 30, 2010 11:45 AM	Hi everyone Just to let you know I've just had my DLA agreed, what a relief.It's all as it's been for the past 10years, higher rate mobility and lower rate care, it feels like a weight has been lifted. Just have to wait and see what happens when incapacity is due for renewal. Good luck to anyone going through something similar Take care Jane Cardiff
fazer 47 posts Jun 30, 2010 12:28 PM	janeb:- Well done. My wife is currently still awaiting news on renewal, Now into week eight with no word as yet. Spoke to dwp 1 week ago and no decision made as yet. No sign of contact with gp or neuro etc on system either at this time. Just a case of waiting for now i suppose.
Rita 195 posts Jul 02, 2010 2:12 AM	Just a reminder to anyone applying for benefits. The DWP will contact your neuro or GP - you will have given their details on the forms. They however only know you very briefly and concentrate on whether your meds are working etc. they are not aware of the difficulties you face day by day with every day things. Once you have completed your forms you must write to these doctors and advise them what you have done and the reasons why. This helps them when the forms appears on their desk from DWP to answer in accordance with your problems. It is mainly a tick box form yes/no but there is space at the bottom for them to put a little bit about your problems - if you haven't told them what they are they can't do this. Most forms sent to doctors ie. DVLA the government pay the doctor £40 for completing it - with DWP the doctor does not get paid so its not a priority for him.
fazer 48 posts Jul 02, 2010 8:30 AM	Received a supprise today 8 weeks after renewal , DLA Renewed high rate (as previous), Low rate attendance awarded. Both awards for indiefinite period. Had been expecting to have to go through appeal drama again however i personally think DIAC advice has simplified submission. My advice to new applicants etc is to get professional help with form.
fazer 49 posts Jul 02, 2010 8:30 AM	Received a supprise today 8 weeks after renewal , DLA Renewed high rate (as previous), Low rate attendance awarded. Both awards for indiefinite period. Had been expecting to have to go through appeal drama again however i personally think DIAC advice has simplified submission. My advice to new applicants etc is to get professional help with form.
pd_eater 38 posts Jul 03, 2010 1:29 AM	i wonder what way it will work when all people that are on it will have to go through an assessment from 2013?? Last Edited on 3-Jul-2010 1:30 AM
AnnK 187 posts Jul 03, 2010 4:52 AM	If there's anyone waiting, like I was, i.e. for DLA renewal forms, which usually get automatically sent out about 6 months before the actual renewal date, I think I was right and the DWP were waiting until after the election to see what would happen/be decided...I've only just received my forms, i.e. 2 months later than usual. pd_eater, I expect it will work against us from 2013 onwards. They are bound to make the criteria even more exacting, aren't they? How else will they save all the money that they say they are going to save? - They will have to pay for more doctors' assessments than they do now, so the cost of that will have to be covered too - And, even though the media would have people believing that we don't get medically assessed, we do already have medical assessments, so they must, unfortunately, be intending to make things much harder for claimants. What do you think?
fazer 50 posts Jul 03, 2010 6:46 AM	ANNK. I agree that criteria will be tightened, However i would hope that a system that is reliant from the start on medical assessments could weed out a lot of "expert claimants" thus producing a cost saving. I have always felt that your own GP should be more involved with an audit process to measure their performance with the process. Also with MG and variability etc How could any medical assessment be used as a snap shot of impact and additionally it is highly unlikely that they would have a good understanding of condition and would as such have to err on the side of caution. During first application process my wife asked for medical assessment as current process of decision making is so hit and miss.
AnnK 191 posts Jul 04, 2010 11:02 AM	Hi Fazer I do take your point, i.e. a new system that is reliant from the start on medical assessments could weed out a lot of 'expert claimants' but I think that those 'expert claimants' could probably win an Oscar for their performances whatever the criteria..I once had a BT engineer visit my house to repair some wiring. Seeing I am disabled, he discussed with me how his wife, basically, laid it on extremely thickly when the DWP doctor came a visiting, so much so that he made sure he wasn't at home during these visits as he felt very sheepish and said he wouldn't be able to perform like that himself! There are always going to be those who rook the system, but in tightening up the criteria there are going to be many of us who have 'invisible' problems who will have increased troubles getting the benefits they need and should be entitled to. I suffer with fibromyalgia and chronic fatigue and live daily in severe pain, i.e. on top of my OMG, but there's no definitive test for fibromyalgia and the examining doctors cannot see my pain, so I and others like me could miss out. And, as you say, how can a DWP doctor get anything more than a snap shot of impact and, for that matter, one's condition, particularly when symptoms vary from day to day in severity? I suppose it's just an unfair world and the cheaters spoil it for the honest. When you say that our own GPs should be more involved with an audit of the process - I'm confused, sorry, do I take it that you believe that they should assess that the DWP doctors have come to the right conclusions about their own particular patients? - Or is it that you think that GPs need checking up on? I could see that the former would possibly be a good thing if all GPs were made equal and took an interest in the progression of their patients' illnesses. Unfortunately, not all of us have such GPs and I am always worried, particularly as I am with a health centre and don't/can't always see the same GP, that any questions asked by the DWP won't be fully and properly answered. My experience is that GPs don't always take accurate notes at visits, i.e. for other GPs in the practice that can be relied on. I don't think my experience is uncommon, so perhaps you are saying that GPs need auditing(?) When you say that you wife asked for medical assessment during first application process, do I gather that you asked the DWP to do this or did she ask her GP to provide an accurate report for her to submit to the DWP? At least with the latter you know whether or not you are being backed by your GP and whether s/he has submitted all the relevant details. All the best Ann
fazer 51 posts Jul 04, 2010 2:58 PM	Annk. Our experience comes having a very good GP who admitted from the start that she had little experience of MG but has taken an active interest. What i meant by using GP's is that with original dla application information was requested from Neuro who was really only focused on MG itself (which i now appreciate) he never had n understanding of other issues that impact (without going into fully much like yourself). We feel that your own GP is best placed to give a good overview of health and impact. We requested initially that GP was contacted (ignored) and then suggested DWP arrange medical (again ignored). At appeal 2 years ago medical pannel member understood and decision was unanimous. I appreciate that not all GP's are the same however do feel that it is importand for MG patients to stick with one GP (if possible) as in reality not many have much experince of condition and building a good patient/GP relationship is essential. I am not suggesting that GP makes the decision simply takes on the role of dwp medical examiner and provides information that would allow decision makers to make an informed decision. An audit process of GPs decisions could be used to gauge peformance. I think it is fair to say that we have been lucky to have found a GP that debbie trusts and who can be quite candid at times which i find refreshing. Your description of BT engineers wife is a big issue and i would suggesg that the problem with many genuine applicants is that they tend to play down things as appossed to exagerating their difficulties. I personally have found it hard watch my wife struggling with condition and then to have to go through a process that induces stress. On a positive note our experince with DIAC was excellent and if anything they simplified the submission:- Admittedly it is two years since original submision and evidence is a lot stronger (rheumatologist reports, increased meds including steroids and azaphioprine etc), It took 8 weeks for approval with no report requested from GP (she had however completed her section very well) and we did provide original appeal certificate etc. Regards Kevin
AnnK 195 posts Jul 05, 2010 6:14 AM	Hi Kevin You have hit the nail right on the head - I agree, genuine claimants do, indeed, tend to underplay their symptoms and difficulties - When you're chronically sick it's the only way to get on with some kind of meaningful life, i.e. to emphasize the positive, isn't it? And, I always find it very stressful having to think about and go through all of my symptoms on the application forms and to be put through medical examinations, so I empathize with your wife. It's all a very worrying process full of uncertainty... One lady I know of has arthritis - She can't bend to pedicure her feet or even put on her shoes and socks, but when the DWP medical examiner saw that she had painted toenails, he said nothing to her, but made comment in his report that she must be able to bend in order to paint them. If he'd asked, he would have been told that the lady's granddaughter pedicures her feet and applies the nail polish. The lady won her appeal but what stress and what a waste of public money! If you don't mind me asking, how did you get to see your GP's completed section? Did she show it to you first or can one request a copy from the DWP? Best; Ann
fazer 52 posts Jul 05, 2010 9:12 AM	AnnK:- GP completed the section on somebody who knows you prior to us posting form:- Her entry was very concise and highlighted increased difficulties associated with condition and meds etc. Your comment on pedicure did amuse me a little (sadly) on the basis that during appeal 18 months ago a DWP rep attended and at one point got out a an multi map and asked Debbie to show the route to the local shop, He then got out a little map reading measure and rolled it along route, At this point i nearly rang his neck and highlighted that it was irrelevant and the fact that she has varying degrees of pain whilst walking (all of it to some degree). I have to say that member of pannel with disability was excellent and understood the situation saying at one point "do you do things that you really should not!", Also once pannel had reached a turning point DWP rep was very helpful and gave some good advice. Any way we are now past that for a couple of years at least and if not hopefully any change will be due to an improvement in symptoms of MG & Athritis plus others. Regards Kevin
AnnK 196 posts Jul 05, 2010 10:17 AM	Hi again, Kevin Good idea to get your wife's GP to complete that part of the form - I had thought that GPs always get contacted separately anyway and so had not thought of doing that. I can imagine how you felt when the DWP rep pulled out that little map reading measure!*! I am also reminded of another instance of injustice - A lady who applied for DLA and needed a walking stick to get about had her three-footed walking stick inspected by a DWP doctor at her medical. He didn't say what he was looking for - She thought he was looking at the type and whether it was the right height for her - Turned out he was looking at the rubber feet/ferrels for signs of wear. The lady had just treated herself to a new walking stick - a lighter-weight one - so there was no wear. The DWP doctor wrote in his report that she obviously didn't really use her walking stick as there was no wear - Her case went to appeal but I don't know the outcome. Anyway, enough of my benefits stories - As you say, your wife's ordeal is over with for the time being and she can now relax as best she can. All the best to you both, Ann Last Edited on 5-Jul-2010 10:18 AM
lynette 46 posts Jul 06, 2010 1:39 AM	Hi I’m getting DLA after having much help to do the form. I hated stating how bad things can be. Having started mestinon a few months ago I am a lot better. I am now questioning whether I should be getting it, especially with all the media going on about benefit fraud and budget deficits all the time. There are still times (on a daily basis ) when mestinon isn’t enough and I can’t do anything, yet sometimes I feel like I’m a fraud and if anyone saw me and knew I was getting DLA I’d be reported! I’m struggling with moral concience and difficulty in getting an objective perspective. When I can’t do anything I lie in bed and then no one sees me (including my GP) so they only see me when I look OK. If I rang the DLA phone line they would tell me to fill out a new form as my condition has changed, but I can’t bear the thought of doing the form again if I don’t have to. Lynette
MrsF 2 posts Jul 06, 2010 3:18 AM	Hi, I applied for DLA in July 2009. I got a reply back within a few weeks stating that my MG would be cured by December 2009 therefore I was not entitled to any DLA. I since requested a reconsideration of the decision of which they stated again I would be cured by December 09. When I contacted them to find how they had reached their decision I was told it was from a text book on MG. They called me in for a medical assessment a number of months later which came a few weeks post thymectomy - I'm very aware of my scar so I took a handbag with me to cover the scarring and bruising - In the medical report they stated that I was able to carry a handbag therefore there was nothing wrong with me. I appealed against their refusal yet again and received a letter from the tribunal service in Feb 2010 and now just waiting for a hearing date...... When I called them they say I wont have a date until late October 2010 but the hearing could be well into next year!!! The whole process is so soul destroying and makes you feel like your banging your head against a wall to prove that you have problems with mobility and personal care!! I'm only 25, its hard enough to deal with MG let alone the ongoing slog of trying to get help
Jane 44 posts Jul 06, 2010 3:59 AM	Dear Mrs F, It would be VERY interesting to us and also to everyone else if you could ask the decision makers which text book they used to state that you would be cured by December 2009 - if you can get us the title of the text book we would be very grateful at Head Office. Im sure the Medical Professionals working on the research into MG would be amazed at this cure and especially that they even gave you a date ! The best policy going forward is to send the decision makers our leaflet on MG and how it effects you - What Is Being Done; Recent research has resulted in more understanding and better management of the disease but there is still no cure, perhaps to highlight the last sentence in a colourful felt tip pen ! Jane Jane Knape Office and Support Manager MGA Head Office Derby. UK.
Jane 45 posts Jul 06, 2010 4:06 AM	You may want to look at this website called Benefits and Work and sign up to their newsletters. It keeps you up to date, the latest newsletter features DLA - 1 in 5 current DLA claimants to be axed. In this newsletter they look at the shock coalition government plans to slash the number of people receiving disability living allowance (DLA) by 20%. A new, points-based system modelled on the notorious work capability assessment process for employment and support allowance is to be introduced for DLA, along with new qualifying criteria. A treasury document has confirmed that all existing DLA claimants of working age will be required to undergo a medical using the new system between 2013 and 2016, leading to savings of over a billion pounds a year by reducing DLA claimant numbers. The three year lead in time means there’s still the opportunity to fight these proposals, but there’s certainly no time to lose. You can read more at http://www.benefitsandwork.co.uk/news/latest-news/1232-5-july-2010-newsletter Jane Jane Knape Office and Support Manager MGA Head Office Derby. UK.
MrsF 3 posts Jul 06, 2010 5:26 AM	Dear Jane, I did request the title from them when I was initially refused and they wouldn't give me the title which tells me that this book doesn't exist - I even asked my neuro if such a thing would have existed and she seemed to think not...... The DWP were very specific in telling me that I would be cured by the 26th December 2009.. I did call them again after this date to advise them I was not...... I understand they need to filter claimants but for this to take almost 2 years by the time i get a hearing date is ridiculous!! Many Thanks Nicola
Jane 46 posts Jul 06, 2010 5:51 AM	Amazing indeed - Im surprised that they didnt give you 1st April !!! This is very worrying as to where they are getting their information from, especially giving you an actual date that you would be cured. I dont suppose you know the persons name that you dealt with ? Have you tried telephoning Lee ( see previous posts above for his contact details ) he is a Benefit Checker and he may be able to assist you on the way forward for your claim - its certainly worth a phone call to him. Keep us informed on your progress. Kind regards - Jane Jane Knape MGA Head Office Derby. UK.
MrsF 4 posts Jul 06, 2010 6:08 AM	Thanks Jane, I will certainly give him a call - things have gone to stalemate just waiting for a date now, will contact you directly with any update thanks for your advice
AnnK 198 posts Jul 08, 2010 1:25 AM	Lynette I was given the advice that I should keep a diary of my symptoms and how they affect me. As you're concerned about people seeing what you can do on your good days and possibly reporting you, the diary could act as your protection, e.g. they saw you on one of your good days or in the morning when you weren't feeling so weak etc. As you have to put on your DLA application form that your symptoms vary/fluctuate it can be more difficult to get the benefit but not impossible, but having to advise this should give some peace of mind. (However, you need to be sure to describe how things are when you're at your worst and what lasting affect it has on you and what you physically can and can't do.) A diary, or a summary of it, can be produced at a tribunal too and as a reference for further applications, hospital and doctors appointments and for your own information also. (Keeping a diary was one of the things that helped me work out that I might be affected by an allergy to gluten.) It's a bind to keep a diary because when you feel well enough to make notes about bad days there are other things that you would prefer to do on those better days. But it might be preferable than feeling the need to 'look over your shoulder' so to speak. I also have the same problem, i.e. my GP doesn't very often see me when I'm feeling and looking my absolute worst as I have to take to my bed. MrsF I wonder if it was the recent thymectomy that you had that made them think/say that you would be cured by last December? They probably read something about thymectomies curing some Myasthenics but chose to ignore the part that said that it can take some time and sometimes it doesn't help at all and sometimes only temporarily...The medical profession have no way of telling thymectomy outcomes, so how can the DWP? Ann Last Edited on 8-Jul-2010 1:41 AM
MrsF 5 posts Jul 08, 2010 1:45 AM	Dear AnnK I would love to have been cured by the date they gave me :D My neurologist is amazed that they were able to be so specific without even contacting her or my GP (both of whom know my condition on a daily basis) This whole thing is making me even more determined to fight for it, there was a point when I was going to give up on the claim but it sickens me so much that there are so many people claiming benefits that have nothing wrong with them that I would rather have the money in my pocket than have it paid to someone like that Thanks all so much for your advice Lots of love
johnw 17 posts Jul 08, 2010 1:48 AM	My wife gets DLA (care and mobility) but at one point we asked them for all the information they had on her, (you can do that and by law they have to supply it) one comment amused and confused us. It was from a Doctor we had never heard of and he (or she) stated that if my wife went to the toilet before she went to bed, there was no need for her to go to the toilet until morning -Their bladder must work different to mine.
Donnaj 32 posts Jul 08, 2010 8:25 AM	Dear MrsF, when I originally applied for DLA I to was refused on the grounds that I would be better in 6 months! After having it for 7 years I would have been delighted if I knew that was true! I appealed and went to see my lovely GP (who has now since retired) and he nearly had a heart attack! 6 weeks later I got my decision letter which awared me higher rate mobility and middle care, I've had that for 3 years now and I am just waiting for the renewel decision. You have to keep strong and fight it.
lynette 49 posts Jul 08, 2010 1:10 PM	Thank you for your advice Ann. The diary is a really good idea, might even do me good to read it myself and then maybe I wouldn’t feel so guilty! Keeping a diary, just for 1 day, really helped when I did my DLA application and I sent a copy to my GP, who really had no idea of what I was going through. To those doing new applications can I restate what is said above. Get expert help. It is really hard to write about how bad things can be on a form. Mrs F. get help with your appeal. Take an expert with you. If you are successful the claim should be backdated to your original application.
Jane 47 posts Jul 13, 2010 7:33 AM	Dear Nicola, Please contact our MG Specialist Nurse Natalie James who is based at The National Hospital, Queen Square in London. Her telephone number is 020 7380 6873. If you explain your difficulty about your DLA case she may be able to assist you with your claim. Kind regards - Jane Jane Knape MGA Head Office Derby. UK.
Jane 48 posts Jul 13, 2010 8:24 AM	Dear Nicola, Sorry - but can you let me have your e-mail address - you can contact me by e-mail at mg@mga-charity.org please ? Thanks - Jane Jane Knape MGA Head Office Derby. UK.