How much weight do letters from Rheumys and doctors have with a successful PIP application?

I was turned down for DLA a couple of years ago as I was told my rheumy sent a letter to them saying my condition was expected to improve. It hasn't, I can barely do anything now, can barely look after myself, can hardly walk, my life is awful. I have a new rheumy as I moved and she must have forgotten me the second I left the room as the letter she sent to my GP about the consultation we had had little resemblance to what actually happened! I have a new GP too so they don't know me at all. I was wondering if it possible to have a successful PIP outcome without support from rheumys and doctors? I'm not due to see my rheumy for another four months and would like to start the ball rolling now. Also I don't know who to go to to help me with the application, there isn't a CAB in this town.xx

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  • Hi Dogrose, if you contact the CAB by phone or email, they can sometimes arrange home visits so maybe you could get someone to visit you to help you complete the forms. You have to remember that you write down how you are on your worst day. I haven't claimed PIP but I had a successful claim for DLA by doing just that - making sure that they knew how bad I was on my worst days because they far outnumbered the better days! Hope this helps, Clemmie.

  • Hi Dogrose,

    Sorry to hear how bad you are :(

    You can ask to get copies of ANY written communication between any rheumies and GP's - you have the right to ask for them so might be worthwhile contacting the consultants that you've seen - even if you've moved. Just ring up their secretaries. You will have a diagnosis on those letters.

    And do what Clemmie says - write about your worst days ( which we all know what they are unfortunately). I was refused DLA the first time, then appealed and had a home visit and it was the best thing that could have happened to me, The visiting GP spent 90 minutes with me and really listened and went through my day and gave me a better physical examination than either my GP or rheumy has ever done. He said that no one with RA like mine should just be on the basic treatment and I'm sure his report kick started everything. So apply and try get a home visit.

    But get the copies of your letters and if you disagree with anything they say, then challenge them or make a complaint. the first rheumy that I saw wrote that I had refused all treatment, had nothing wrong with me and discharged me.

    A second referral to another rheumatologist and after many setbacks, I'm on Methotraxate injections, Humira and steroid injections when I'm really bad....don't think they'd do that if there was 'nothing wrong' with me, do you?

    Don't be scared of challenging the medics. This is your body and your pain and your life that is being taken over by this shitty disease. When you feel well enough, keep fighting.

    Sending you gentle healing hugs and hang on in there.....it doesn't go away BUT with the right treatment, it can be controlled. xxxx

  • Also...when you fill in the PIP form, write a letter about EVERYTHING that has happened to you. When I appealed for my DLA, I wrote a 5 page letter about the useless first rheumatologist etc....so all that you've experienced with the old and new medics, write it all down. xx

  • I understand the frustration of Rhuem Doctors saying one thing to you and another in their letters to your GP. I record my Rheum Doc visits, because of the brain fog. Got a small digital device that hides in my pocket. Same one I used at my last ATOS appointment.

    Got a new Rheum Consultant she is more accurate in her letters and they turn up at the surgery in 2 weeks rather than 8 with the other one. GP was never asked for a letter when I applied, he couldn't have written much as I only go to him for emergencies, like pneumonia.

    The DWP guidelines on Rheumatiod Diease was corrected a few years ago. Originally it compared RD with Osteoarthritis, which we know is not the case. It now mentions that it is a long term diease with no cure. Big change in definition.

    I don't have a CAB near me anymore, it closed a few years ago because of lack of funding. A friend suggested I go on line to the Benifits and Work site. She had become a member and downloaded their help guides for how to claim DLA and ESA.

    It was the best thing I did. The guides are easy to understand and they break down the DWP/ATOS forms so you answer what you need to get over not what they want you to put down. This is the Benifits and Work link to PIP.

    benefitsandwork.co.uk/perso...

  • I always write out a summary of what I put on DLA/PIP forms and give it to my doctors, so they know how the disease is affecting me. Otherwise, they can only go by what they see in the consultations, and as they are more interested in the disease than the disability, that means they aren't usually in a good position to be able to tell DWP how disabled you really are. I find that my GP anyway takes it much more seriously when I do list the things I can and can't do, and they definitely refer to my summary notes when they do their replies to DWP. Your rheumatologist was probably quite right to say that he expected your RA to improve - that would be a good outcome, and one that he is working towards. however, as you are aware, it doesn't always happen that way. So making sure that next time you apply, you do actually let him know the full details of your disability (not just whether he things you have active inflammation or not) may mean a more successful outcome.

    The other side of it though is that if your disease and disability haven't improved considerably after this length of time, really push your rheumattologist for more aggressive treatment, including considering anti-tnfs or changing anti-tnfs.

  • Hi Dogrose, I would certainly encourage you to apply again and you've been given some good advice. Yes, our RA or RD will hopefully improve but we all know how challenging it is trying to get to the "improvement" stage but it NEVER will go away, my understanding with PIP is that short term awards can be given if improvement with the health condition is expected with a another assessment at the end of the award to see if improvement has been made if that makes sense?! Go for it and wishing you the very best of luck this time around... Be prepared for a long wait after applying but the buzz seems to be that things are slightly improving on the score :) x

  • Thanks for all the replies. when I applied for DLA I really made a huge effort, wrote everything down in great detail, even embarrassing personal information, a separate pain and difficulty diary, no detail missed with what I had problems with and they turned me down purely on what my rheumy said. This is why I wondered if it was possible to be successful with PIP without support from a rheumy because the forms and what to say on them aren't the problem. I can't exactly contact her and say 'if the PIP people contact you tell them I'm really disabled' :/ I won't see her for months and she has no idea how hard my life is. She knows me knees are bad and didn't seem interested, just said it was permanent damage but didn't offer me any tests or x rays.

    I am already on my second anti tnf treatment, it doesn't work as well as it did but I'm not sure whether to tell anyone, in my experience if I tell them that they will instantly take me off it and leave me with nothing until I see my rheumy in four months, it has happened to me before. The only pain killer I can take is paracetamol.

    What makes everything worse is I have mental health problems too which makes me not able to really understand how to get help, I don't understand how people seem to get help even if they explain. I can't use telephones and I'm not mentally strong enough to be able to appeal if I'm turned down. I feel completely alone with all this and wonder what is the point, I'm just tired of it all.

  • Hi Dogrose, I really feel for you. You sound like you are really in need of some help and support with this, why don't you contact the NRAS helpline in the morning, I know you've said you can't the use the phone but I think it would be really helpful for you if you do. Hopefully tomorrow they will post a reply for you also. Good luck and I hope you get the support you so obviously need :) x

  • Hi Dogrose,

    sorry you are having so many problems with your applications. We have a publication called "How to claim Personal Independence Payment" You can download it from:

    nras.org.uk/publications/ho...

    There are a lot of contact details in the back of organisations that can possibly help you with your application as well.

    If you need a hard copy you can order one from the website and you can always contact the helpline by e-mail on:

    helpline@nras.org.uk

    Hope this helps and good luck with the application.

    Regards

    Beverley (NRAS helpline)

  • Appeal or re apply. And apply for pip

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