PIP assessment

Good afternoon

Please bear with this as it’s quite long.

My name is Beverley and I am 52 years of age.

I live in Gravesend Kent with my husband and two sons.

In 2013 I was diagnosed with a rare genetic illness called Spinal Cerebellar Ataxia 6 which is an inherited disease causing symptoms akin to Parkinson’s, MS etc and has rendered me disabled and dependent on my husband for virtually everything.

Up until 2015, I was still able to work as a deputy manager for a large disabled charity but unfortunately due to my condition I was “let go” after 12 years.

I was awarded the high rate of DLA for mobility and the care component and my husband retired and became my full time carer and received careers allowance.

Earlier this year, I was informed that I would now have to apply for the new PIP benefit and would have to be assessed by a professional health nurse who would come to my home and carry out said assessment and would need to see any relevant information regarding my application. I had lots of correspondence from my neurologist, Occupational therapist, other health professionals etc ready to show her.

On her arrival, my husband took my youngest son out for a short while so that we had a quiet environment. Bad move !!!

She informed me that she was a nurse and that we would discuss how my disability affects me and that she would be taking notes and making observations.

She was here for about an hour and a half and we talked about my condition and I explained everything to her and answered lots of questions. I offered to show her all of the paperwork that I had prepared however; she said that she didn’t need to see it as she had thoroughly read my file and had enough information regarding my condition.

I asked her if she needed to see any of my equipment or adaptations to the house and more importantly did she need to see me trying to do anything.

She stated that she had enough information from my neurologist, OT and GP etc and as far as she was concerned , I had nothing to worry about.

I received a response from the DWP saying that my DLA was being cut to the standard rate for the care component of PIP as I had only scored 10 points and not the 12 points needed for the higher rate however I would still receive the high rate mobility component. This decision meant that my allowance would be reduced by about £100 a month.

I was so enraged that I began the appeal process which was initially a telephone call explaining why I felt the decision was wrong however I received a letter upholding their decision and that the next step was to undertake a written appeal which I did and I’m happy to say I won and was awarded the higher rate of the care component.

When you undertake a written appeal, you are provided with copies of all of the relevant paperwork that all parties have provided including the assessment paperwork completed by the nurse that came to visit me.

When I read through it, I was horrified to discover that the nurse had written a further report of a muscular skeletal examination that she had carried out including getting me to bend down, crouch down, arm and hand rotations for which she had written down degrees and angles of rotation, all manner of different exercises that she had got me to do and then written a report with regard to my ability to carry out said exercises. I was then mortified to read that she had written that I had given her my consent to carry out the examination!!!!!!

I was advised by the appeals panel to make a complaint to Atos, the company used by the DWP, to carry out the assessments as they needed to be challenged and this to be investigated.

I felt that the nurse probably believed that I would be awarded the higher rate and would have no need to appeal therefore not ever having to see the report.

I sent a written appeal to the customer care services and was informed that it would be investigated and I would receive a response in 20 working days.

On 31 st of October, I received a letter from Dan Ferguson, PIP Client Relations Officer stating and I quote,

“Regarding the Musculoskeletal Observation (MSO) examination that you have advised was not carried out, the Health Professional does not remember the exact details of your individual assessment, however is quite certain that she would not have noted down the outcome of the MSO had it not taken place.

As there was nobody else present during the assessment we are unable to comment on the claimants allegations that the MSO was carried out, however based on the notes from the report there is no reason to believe this did not take place “

I was furious as it basically said that it was my word against hers and that I was a liar.

Today I telephoned Mr Ferguson To discus his decision only to be told that as it couldn’t be proved one way or another he upheld his decision although I could take it further however the outcome would be the same as there was nobody else present and it couldn’t be proved.

There was no concern that there was even a remote possibility that this was true and the people carrying out the assessments are making fraudulent reports and unless they appeal they never get to see the paperwork relating to their claim.

I used to work in the care industry and have had to provide written reports for professionals and funding providers etc. I would have been sacked for making false reports and people would have been affected by false information.

I am absolutely horrified that she has lied and provided false information on myself and that I have basically been accused of being a liar myself. I have nothing to gain by making a false accusation, I won my appeal on my own merit and only discovered this because of my appeal.

My real concerns are wether this is a common practice and how many of their staff are doing it? How many people have suffered hardships because of this issue and have had their benefits cut because of bad practice?

Being disabled is bad enough and having to continually justify and prove that you are unable to do anything for yourself is hard enough. I hate being on benefits. I loved my job and want to work but I can’t, I can’t even claim ESA because my husband receives a small pension and now I have to pay back £7000 due to this.

Then to basically told that I’m a liar.

Than you for listening and kindest regards


Sent from my iPad

18 Replies

  • Sorry to hear this. There's so much injustice

  • Tell me about it. Not going to let it drop though

  • Bev, have you seen Harriet's link? But you'll have to be quick 👍 These experiences are unnecessarily demoralising, to say the least 😑xB

  • Hi B

    I’ve done it xx

  • Bloody joke theses people that assess you,this also happened to me again putting down lies about yourself had to go to appeal court won the cases,but I feel this is a disgrace what we have to go through.

    Well done on getting wat is rightfully yours 👍👍

  • I will not bore you with the details but I had a nightmare applying for PIP and we complained to Capita my assessors (who in the end gave me a donation for Ataxia UK). We also complained twice to our MP, DWP, local paper and Health Minister. I had to have 2 assessments and we demanded a copy of everything they had. I scored enough but we saw just how stupid their scoring was.

    I have heard some terrible stories and I am sorry you had to appeal x

  • Litty, it sounds horrendous. The current system of assessing obviously needs an overhaul, too many people are able to abuse the system, while legitimate applicants bear the brunt. Apart from the fact that 'Health Care Professionals' are seemingly 'lax' in their reporting 🤔xB

  • It was horrible, cruel, un-necessary, degrading and insulting, and I cried so often (why did they need to know if I had considered suicide or tried??) but so glad it is over x

  • Hey Litty. How did you address the eyesight thing? I missed out on PIP by a point and feel this was due to the fact Capita assessors totally ignore double vision or nystagmus. They can only understand reading a standard opticians chart. Not helpful

  • Hi Beverley

    Congratulations on your successful appeal but your story is concerning.

    Have you seen this link?


    The deadline seems to be this Friday (10th November). I think it would be valuable you submitting your experience. Unfortunately you are not alone.

    Best wishes


  • Hi Harriet. I’ve already submitted my story I just need to add the outcome of the so called investigation. Disgrace.

  • Well Beverley all I can say is well done for sticking to your guns. It is dreadful the way that a business can assess you,these people obviously have an agenda and are paid bonuses if they can stop us

    getting benefits that are due to us Best Wishes Derek

  • I am just going through this now and people keep saying you will be fine but I am so stressed out over it if I lose my benefit we will lose our house bills cannot Evan walk my husband works full time and is my full time carer we have a good system in place, but as he works full time is not classed as my carer

  • Just make sure you have someone with you as a witness

  • Report her to the Nursing and Midwifery council....with all your information.

  • There is an organisation called fightback4justice.co.uk who give advice, provide samples of well completed PIP forms and even provide advocates who will accompany you to your assessment. Luckily I didn't need to use all their services but they are fully aware of the lies that are being told in the PIP assessors reports.

  • Hi Bev, I have just got the forms to fill in for PIP and I am hopeless at forms and don’t know what they are asking at times. Hoping mine is not a horror story like yours sounds, hoping they will do my forms right and I will have my family with now, after what you have said. Thanks for the info, glad it work out for you in the end.


  • that is awful, have you tried to claim contribtions esa?

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