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Fibromyalgia Action UK
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D L A indefinite for 14 years now P I P forms received

Well the dreaded letter arrived. But on reflection, glad it came before I am 65 in November. I have the higher mobility DLA as I also have a heart prob. I use it for a motability car for last 18 months. But that money was so welcome when I couldnt work much. At least I get my pension now. Doc been very supportive.

So depending on whim of an assessor I might lose my car and blue card. Seems like even Stephen Hawkin might struggle to get award these days 🤔. I think the Blue Card loss would be worst thing. Would restrict where I go a lot.

Any tips please.

13 Replies

Good luck.

1 like

You shouldn't lose your blue card as this is provided by the council and they can assess you even if you don't receive benefits. I think you still have to let them know if you lose benefits but it doesn't necessarily mean you will lose it. I think they prefer if you are receiving benefit because it saves them having to assess you themselves because the DWP have done it.

I am on indefinite mobility award too and waiting for the dreaded change over form. On edge all the time about it as I can no longer work so rely on this money to keep car on the road and pay bills.

Good luck and let us know how you get on.



I was surprised when I received pip letter so soon, but then realized its better for me to do it now as I can still get mobility under 65. After that you have to apply for attendance allowance I think. I am 65 in November. My consultant has written a really good letter for me again, as he did 14 years ago. So fingers crossed. Good point about the Blue Card.

Hope you get it when your turn comes. I think you can get help with forms from various places, found a helpful guide with points needed on googling. So still had original forms to look at.



I keep all my correspondence with DWP. Had too many times when they've denied receiving things etc.

Good luck.



Hi You are so right I have absolutely all my letters appointments, MRI's Nucleate bone scans only send copies they can help to prove how much help you need good luck,


Hi there

Firstly do not fill the form in yourself. Get some professional help. I would highly recommend that you Google for a Disability Advocate in your area to help you. They will do this free of charge.

Secondly get in touch with Janet our own Benefits Advisor. She will send you some Benefits and Works guides. Here are all of her contact details. There will soon be a free phone number. When we have it I will let everyone know:


If you need any more advice please don't hesitate to get in touch with me.

Wishing you less pain and more peace

Lu x



Thank you for that. I had help last time. Unfortunately havent got any spare time to get help as going on holiday before deadline so have filled it in myself. I looked up the points system, so know what is required, but just ploughed ahead, although I meant to practise first. I have a good letter from my cardiologist as I have a debilitating sino atrial disease causing arythmia, and a letter from my orthopaedic consultant confirming severe facet joint problems, and from rheumatologist re fibromyalgia. Do you think that will help. Just hope I may not need assessment. Got it without last time. If I have to appeal I will definitely get help.

At least it would delay having to return my motability car.

Should I include pictures of me in wheelchair and my wheelie stool and walking aids do you think.

I did find filling in the forms exhausting and getting collating all the info/reports, then having to scan it all. I put that on the form too It was also very depressing realising how limited I am now,

I used to play loads of sports and was really active.. My dear brother, who was a sports teacher and yachtsman, had a similar condition which developed into cardiomyopathy and sadly died 20 months ago after a failed heart transplant, I miss him so much and makes me worried I will end the same.

Problem also is that all this puts more pressure on my husband who already has to do so much and is now on meds for anxiety etc. I am very lucky to have him and my daughters, I know.

Anyway will have a last look at the forms. Can you use tippex on them. Wish I had photocopied them blank first.

Thanks for the good advice anyway


To be honest with you I'd ask Rose54 what she thinks.

She's the expert.

I hope you have a wonderful holiday.

Lu xx



BlueMermaid3 has given good advice

Its also handy to keep a diary for 3 or 4 days just on the lines of what you need help with how long it takes to do things and how much pain you are in doing the activity or after. Send in with application .

Also their is a section at the end about help you may need at assessment you can request assessment close to your home or later in the day just make sure you put why .

When it comes to completing the form do it on the lines of not thinking about your illness but on what you need help with and why .Things you cant do due to pain either doing them or after.

For Example

Diabetic on insulin may have a full life and no problems but still a diabetic .

Diabetic unable to use hands due to chronic pain will need help with taking blood sugar levels, Administering insulin and if suffering from Chronic fatigue will need prompting to eat regularly and help with preparing healthy well balanced meals .

Hope this help

One answer will score zero points where the other will score points

Good Luck



Thank you. Will do that.

1 like

I want to genuinely wish you all the best of luck with your assessment my friend. I think that BlueMermaid3 has said it all really! Please take care of yourself.

All my hopes and dreams for you



So pleased it went well for you some of us are lucky enough to have good doctors I went for my assessment in May and they still haven't contacted me I'm so worried about why it's taking so long take care gentle hugs


Well good news. I kept my higher mobility level (therefore my car) and got care element too. Only 1 off higher level. Didn't expect any. So quite relieved. Got it til 2022. When I will be 70.


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