Functional Neurological Disorder PIP victory (KIND OF) my story and advice


I have just been through the whole PIP process through to tribunal and I don't want to put anyone off or worry anyone but it has been an ordeal to say the least.

I have been diagnosed with Functional Neurological Disorder since 2015, CFS since 2015, anxiety and depression ( latter long term) and some other minor ailments ( RLS , migraines etc...) so I applied for PIP in March filled in the form describing in great detail all problems and gave all medical evidence and went to the assessment.

Like many I had been advised tried to answer all the questions in detail even bringing a summary to use at the assessment due to bad brain fog ( that was a mistake because the assessor said I could answer all questions so I had no problems with memory ect...).The assessment was relaxed and the assessor asked a number of questions and did a quick physical while typing on her computer in all it lasted 1 hour.

I got awarded lower mobility but nothing else and only got points for the daily living where I had equipment (6 in total) so I asked for a reconsideration.

I tried to get more info but after reading the assessors report noticed many errors, omissions of information and conclusions about my illness , so I also wrote a letter pointing out this to the DWP.

The DWP contacted me and said the problems with the report was not there problem even though that is what the mostly use to make there decision and to write to Capita ( the assessor), I did and Capita said sorry but there is nothing they can do about it.

Reconsideration was turned down within 2 days I don't even think they read the extra info ,I rang them and basically asked what was the point of sending in the form and medical information if the were just going to disagree with it all but they just said my only option was to apply to go to tribunal.

I got help writing the appeal from the CAB but they don't represent anymore, I had my tribunal on 30/10/15 I can say it was very traumatic being interrogated for 1 1/2 hours by un bias people ( the doctor was the worst very sarcastic and dismissive)

They didn't take my mental health issues or many of the non physical issues relating to my FND and CFS but I did get the lower daily living allowance awarded .

So lower daily living and lower mobility awarded for 3 years yeah only took 8 months.

I plan to recover but if not my advice and what I plan to do next time are -

Record the assessment you must give a copy to the assessor on the day this means no made up assessment for the DWP ,getting the assessment sorted and correct will be a big help to your claim.

Give as much medical evidence as possible I will save and have a private assessment done first if the time comes.

The DWP do not want to give you anything and assume you are lying unless proven other wise prepare for a battle so go to the CAB for advice.

The medical assessors do not by law have to know anything about your condition they just have to be on a medical register for 2 yrs prior ie phsio, nurse or paramedic (they get the proper training about completing to form in 2 weeks.)

The DWP will mostly use the info from the assessment and medical info.

The DWP will only accept medical evidence that not over approx 1 years you will need up to date info.

Do not go alone even into the room.

Having physical symptoms helped a great deal for me.

The DWP, assessors and even some GPs have lack of knowledge about the condition.

Good luck to all that are trying to get PIP hope this helps.


5 Replies

  • Thank you so much for this information. I have my PIP assessment on Monday. So.I shall go armed with lots of information. So sorry that you had to go through that palarva xx

  • Hi

    If you have like me memory or brain fog problems my advice is don't take any written info to refer to so you can answer all questions they will use it say there are no problems in that area and you may lose points , they have the written info from you, medical letters already and the doctor will have filled in a form for them as well ( I only new this later).

    If not ignore most of the top but the doctors form will be important see if you can get a copy from your doctor to see what he put if not you will get a copy if you are not successful and ask for a reconsideration.

    The assessor will be very nice and seemly very caring don't try to please them stay very clinical with them they try to get a relationship going to make you feel at ease.

    They will ask you about good and bad days I am lucky mine stay about the same only my fatigue differs daily so if you go with the advice of using only your bad days make sure your information does not slip up or contradict.

    They will ask obscure questions seemly random or seemly kind personal level questions but these are to see if your information contradicts.

    They will do a physical DONT do anything you feel uncomfortable doing or try to push yourself.

    I am still so angry about this whole process why I started this post ( I am still waiting for my back dated money at least 3 weeks I was told) if my experience can help others get what they need then that can only be a good thing I am not an expert but knowledge is power.

    Good luck Jenny

  • hi im on filling mine in , im so nervous now , im gona take my mam for support .

    sorry to hear how u had to deal with yours, if they had what we have im sure they coulnt cope .

    best wishes

    carol x

  • Hi don't be nervous this post was not meant to worry you try to take my story and beat the DWP my experience seems a common thing now unfortunately. If you have time get the CAB if you can ( and want) to advice you on filling the form in apparently that was my first mistake. Taking your mom is a great idea but they may not let her speak be aware of that.

    I think your right about the last comment but I bet these people would get there claim because they know the system.

    One of my symptoms I have is right side weakness I am right handed so this causes many issues the best comment I had " your left arm has no problems so I cannot see any problems with you being able to put on your socks and laces and do buttons etc..."

    You have to laugh wonder if the would say that to a stroke victim or amputee.

    Good luck .


  • Hi jenny

    I was obviously lucky with my assessment 2 weeks ago. I had a chap who is a paramedic by trade and quite lovely. I heard today that the have (without quibble) awarded me PIP, backdated to Sept 1st. I didn't agree with a few of the things in the report (no memory issues, no mobility issue etc) but at this point I am just grateful that it was resolved so quickly. I thank you for your initial post as it prepared me with what to expect.

    Shame you went through so much hassle, I think it's the same as quality of neurologist.'s all a postcode lottery

    Take care

You may also like...