Dermatomyositis : Hi All, just been diagnosed... - Myositis UK

Myositis UK

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Dermatomyositis

Parisian13 profile image
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Hi All, just been diagnosed with Dermatomyositis-been on my medication a month. I think I’m responding ok in relation to the side effects….so far, so good!

Just wondering what things people might be using to make life easier? Has anyone applied for a blue badge, is there any help out there?

If someone further down the journey could advise me on anything I can tap into to make life easier that would be great.

Thanks 🙏🏻

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Parisian13
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fbcburnett profile image
fbcburnett

Hi , here's a post I wrote 3 years ago that may be of some help. Before you can apply for a Blue Badge, which nowadays is a pretty straight forward process on the internet; you must gather as much medical evidence as possible in order to prove your disability. I also claimed for the PIP benefit which to my Knowledge is still not income related and is granted on a points basis depending on the severity of your disability and how it impacts on your mobility and daily life. If you are granted PIP this can go a long way to proving your disability when applying for things like a blue badge.

'Hi, I have recently been awarded both PIP benefits after a long application process. My advice would be to print off all of the question to question advice as given on the Citizens Advice Service web site, they suggest many points that initially I thought did not apply to me. You have to start with a telephone interview, prepare well and explain your situation as it is on a bad day. Do not forget to list any other medical problems you have including any mental health impact this has had on you. Be firm with your GP and get as many referrals for your conditions as you can. If you get through the telephone interview you are then sent an application Form/booklet. Your answers are point scored so again refer closely to the Citizens Advice Service and the governments own web sites ( there is lots of other advice on the web). Make sure your answers are as full as they can be especially for high scoring questions ( I completed a further 30 plus additional pages ). I then underwent a 90 minute face to face interview based on my given answers on the written application; although the lady who conducted the interview (a registered nurse I think) readily admitted that she had only skim read my forms ( 70 pages- Grounds for appeal if my application had failed I think ). Bring a copy of your forms with you to refresh your memory. You are entitled to have someone with you who may take notes. Be consistent with your answers, bearing in mind you are being point scored. If you are upset by the process say so and do not attempt any physical tests if it would cause you discomfort ( i.e. touching your toes ). Do not lie or exaggerate but DO explain your condition and its impact in the fullest terms as it is on your worst days. Once you are granted PIP ( Its not means tested or income related ) you may then be able to claim other benefits on the back of it such as a blue badge, Employment support allowance, carers benefit, etc. again check on the web.'

Good luck, Colin.

Parisian13 profile image
Parisian13 in reply to fbcburnett

Hi Colin, that’s great. Thank you so much-I really appreciate you sending this. I’ll start with the PIP. Amanda

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