Wegeners and pip

Hi I'm 49 and have been seriously unwell for 7 years being diagnosed with Graves' disease and graves eye disease in 2011 after two years of being told I was just depressed by Drs ... I had decompression eye surgery and a total thyroidectomy in 2013 and rather than improving my health got far worse until sinus surgery last year found the wegeners disease which has already destroyed most of my sinuses and nose . I applied for pip in 2013 and was refused after a long period of waiting for a medical . I then took it to appeal and got zero points in 2014. I then had to apply to upper tribunal and was refused then appealed their decision and have a new appeal hearing in August and I'm finding it difficult to know what to say as I think I didn't express very well how much this has affected my life mentally and physically so any help appreciated as u find it hard to concentrate or cope with the stress of the paperwork and can't risk getting it wrong and loosing again xxRead less

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11 Replies

  • Check this website out it will tell you what to say in forms to get the right benefits!

  • Thank you so much I'll take a look now xxx

  • Fantastic stuff and thank you

  • You could also try your local citizens advice, they should have someone there that can help. I recently had my assessment and was told it is mainly about the help you need not how ill you are!

  • Thank you I do have cab and we lost the last appeal and although I had this awful disease then I didn't know but the symptoms and pain and anxiety where along with so much more but I think I played it down and was so anxious I couldn't express things well or even speak ! I am so scared about having to go next week that I am having nightmares and panic attacks most nights hence my silly o clock reply and I'm becoming trapped at home fed up with looking like an alien even after decompression eye surgery twice and being taunted for it and I've lost my life and friends family job and been called a junkie Nd called a liar and lazy Nd have no voice defending myself . Had an appeal already for esa and won only just Nd I think I will loose this pip one again even with cab as so little is understood about wegeners . Thyroid was so diseased that 2013 I had it removed and thought that I would get better but I was worse Nd told I was attention seeking !! My mental health scares me as I can't show how I feel most of the time through fear of more rejection Nd can't cope communicating No one listens so a panel of strangers that prob have no idea what I have will be the same . I will have a look at the link on benefits so thank you all for your helpfulness xxxxx

  • Have you asked cab if there is a local representative that can go with you to put your case across? I have just registered on the work and benefits website, they have some great info you can download and use at your appeal.

    Please let us know how you get on.

  • Hi Bluecarol,

    As Asilanna says check out the benefits and work website. They have a forum where you can gain valuable information from others who have gone through or are going through the process. Plus excellent guides for form completion. (Although you have to pay a small fee to join it is definitely worth it).

    I found myself extremely saddened when I was advised to apply by my GP, it was about accepting that I needed help rather than being the one that's always given it. I have a number of conditions as well as PMR and GCA. We have a local disability advice service they kindly completed my paperwork. I have to say it is so much harder doing this for yourself. It's not the paperwork but the emotional issues it brings up. But what I have learnt is never ever give up. The system is geared to deter people rather than support. The overall aim is to save money hence the change from DLA to PIP. So take heart Bluecarol you are not alone in your journey for help. There are many who can help you including the Citizens Advice Bureau.

    Love, strength and prayers.

    Margaret X

  • Thank you so much Margaret for your understanding I will get some more evidenced into my cab lady that's supporting me today and see what help I can get without the fee as I don't have a pound to my name until Friday 😞 The biggest part of all this is loosing hope and trying to work and being sick and exhausted and absent made it worse I tried so hard it nearly killed me and colleagues told me I was a joke Nd were cruel it's just so hard to be me right now xxx

    Thank you for giving me a little hope it's so kind xx

    Carol x

  • I also had many years where my wide range of symptoms were put down to anxiety and depression. I truly wish I had never volunteered the fact that I had suffered with depression. I changed doctors practice 4 times until I found my current GP. He really listened and even took ALL of my records home with him and I feel very blessed to have him.

    My symptoms were random sweating, awful muscle & joint pain, visual disturbance, racing and then low heart rate and also constipation then the awful stomach cramps. I had so much more but honestly can't remember now.

    I was diagnosed with inflammatory bowel disease in May 07, I was blue lighted into emergency and had to be resusitated and given 4 units of blood. It was ulcerative colitis and then the diagnosis changed to Crohns colitis. I was put of prednisolone and tried on all of the immunosuppressive drugs. I was still getting the fevers and bone/ muscle pain and visual disturbance so had many more tests. To cut a very long story shorter, I am awaiting a full diagnosis of Wegeners but right now am diagnosed officially as having generalised ANCA positive small cell vasculitis.

    I was awarded high rate DLA for care and low rate mobility and on an indefinite basis. I was supposed to have the PIP stuff last year but am still waiting. I guess that they have so many appeals that they are backed up.

    Please make sure you reply as if you are having the very worst of your days. Never reply to them from one of the better days. You get points if you say your need prompting to get dressed, wash, eat etc. There is a post on vasculitis UK page that allows you to do a self assessment and it has all the questions that they ask. I did it and answered honestly. I got high on each so I would ask you to do a web search of PIP self assessment questions and then you will have a much better idea of what will be asked and, more importantly, how to answer. For instance, I can't cook now and due to me wobbling and spilling. You get points for that and also if you can only do microwave meals. If you need prompting to eat, wash, take care of appearance then you get more points.

    I hope this helps you. Please remember just the one thing, if you forget the rest, ALWAYS reply as if you are experiencing your worst day.

    I would love to work but I am not reliable and so no one will employ me.

    Please message me if this doesn't make sense

    Kind regards

  • Jools thank you so much for your kindness also xx everyone has been so kind and understanding and I feel a little hope thanks to everyone's efforts to help xx

    Your symptoms are the same as mine and like you say there are so many more we go through daily and have learnt to cope with and I can do things at times if I'm dosed up on painkillers and the face and nasal pain has and is horrendous my nose is collapsing and I feel hopeless knowing its eating away at me taking more each time as it gets worse with each flare up and methotrexate was increased and I'm on injections weekly now but it's still attacking and in my ears Nd throat to and the strongest pain relief they give me is tramadol which I take with ibuprofen Nd codiene alternately and does very little to ease the pain I almost have to meditate it away and sleep Is disrupted that when I do get some not so bad days I can just sleep Nd sleep lol xx I'm on so many other meds I am unsure if any are doing much at all Nd why they have given me morphing for when it's this bad I can't understand and I'm scared to ask for it but loose it with pain at times 😞 .. Thank you for sharing your experience with me and it's been very helpful I hope you are improving Nd pain free at least xx I'll keep posted on the outcome of pip appeal but if I loose I can't appeal again I had to go to upper tribunal and that was refused so appealed again and they allowed another hearing do it is the last chance xx thanks again x

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