Indefinite Higher Rate DLA to Standard PIP

I have had multiple sclerosis since 2003, I also have a progressive muscle wasting disease with no cure called Hereditary Motor Sensory Neuropathy, I have fibromyalgia, I have had a heart attack & have heart disease. I have been on the higher rate DLA for both care & mobility for years.
I had to apply for PIP in May 2016 & I have just had my results 4 months later of my face to face assessment. I am literally at the end & I just cannot believe what has taken place. Firstly I have fantastic support from my GP, my Neurologist, my Neuropsychologist for my memory & cognitive difficulties, my physiotherapist & my Occupational Therapist. I have spent a fortune on sending & re sending all my letters of support & evidence by Special Delivery in which was all signed for & all lost time & time again. Six times in total. I'm literally speechless. The DWP then wrote to me & apologised & said they now had it all. It was a lie. I phoned everyday for weeks over the months. I'm too tired to go in to detail but I did not recognise the assessors description of my face to face, it was simply a mass of lies, contradictions & errors on a breathtaking scale, they even called me HE when I'm a lady.
I will now lose my lifelines, my mobility car, my carer & my meals on wheels. I have a 21 year old daughter who is also disabled & we have no other family or friends close by. We will literally be trapped at home. I'm so disabled I cannot cook, how will we eat? I have no fight left in me, I'm simply broken by all this & im not a quitter, I was a heard working person, I was a Special needs teacher. I feel like I am fighting an enemy who is hell bent on destroying me. Who's to say they are not going to lose all my paperwork if I ask for a mandatory reconsideration? There track record on losing PROOF of disability is good. I can barely walk 10 metres to my kitchen & downstairs loo let alone walk 50 metres that my assessor guessed at. They ignored all supporting letters completely & made me sound like a bright, sprightly spring chicken. How can I fight this system & get the benefits I'm entitled to when I am simply exhausted with pain & lack of sleep. Does anybody have any advice please? I was moved to an adapted house in a town where I don't know anyone & im grieving the death of my lovely Mum who has passed away. Thank you so much.

Hi Susan,

I know this is not your first post on the forum but I need to point out that your real name is showing in the forum, if you want to change this then follow the instructions in the following FAQ

My full name is showing, how can I stop it?

I am sorry you are going through this, it certainly sounds as if it is the last thing you need at the moment!

The only way you can challenge this decision is via a Mandatory Reconsideration. If you have already provided all possible information and evidence then all you can do now is clearly point to where this can be found in your original documents.

Don't be tempted to argue every sentence in the report that you don't agree with. Discrediting the assessment will not, in itself, gain you a PIP award. You should concentrate your time and energy in showing how and why you should have scored points against the descriptors.

The MR process is explained in the PIP guide.

Please reply to this message with further questions or comments about your PIP and we will do our best to help. You will find it easily in future if you bookmark/favourite it on your web browser now

Dear Susan

I am in tears reading what has happened to you. I am so so sorry. What you wrote resonated with me so much' The bit about fighting an invisable enemy hell bent on destroying you' I feel the same. The bit about having to send and resend all the evidence and the expense, the physical and mental exhaustion and how you have been ground down by it all and have no fight left, the fear of how you will cope with no money. Feeling isolated and suffering a bearevement. I am facing my face to face tommorrow and expecting the worse and my mother has just. died also. I feel I have an invisable enemy hell bent on destroying me.

What happened to you is wicked and cruel and nothing I can say is of any help. Put please Susan try not to give up. Sleep on it and put in your mandatory reconsiderationa s soon as you can before the month is up. At least you dont have to go into too much detail at this stage to get the ball rolling.

It s not much help to you to know tha you are not on your own being treated in this way, but I hope this inhumane system will change. what else can I say. Try and take a deep breath try and get some rest and try to fight on another day. One day at a time. Sorry

Hi Susan If it helps in any way I understand your distress as we are in the same position. My partner has a lot of difficult and challenging health conditions and also heart disease and also has supporting information from his gp and consultant specialists. Like you we are left confused, distressed and lost at the changes to DLA in the system. We have provided a lot of information and was also seen by atos. Only days ago have we now learnt my partner has lost his higher rate awards and been given PIP standard awards, we now have a fight on our hands. We have made appointment to see citizens Advice - they run a thing called CAB GP outreach scheme, where you can see them at your GP`s or home visit. speak to your local CAB branch and see if they do the same. It is best you involve them and I feel sure they will visit you at home and help with your reconsideration and appeal. I know it is something I am doing as with all the changes over the years I am totally wrecked with form filling and appeals and accept we need help with these complicated changes, forms and system.
Best of luck to you and I hope it is soon resolved and your awards put back in place.

Thank you so much, I will try & change it now. Thank you also for your advice. It's much appreciated.

Dear Wolfchile,
Thank you so much for your kind words & taking the time to write. I'm so sorry you are going through it too, I'm so sorry about the loss of your Mum too. It's so nice to find another person who understands. Our local paper which is owned by Trinity Mirror have been highlighting so many of these horror stories of late & they have been to interview me & make a video. Im feeling a bit stronger today & im going to try & put together a mandatory re consideration letter just highlighting the 3 most important points, the rest I will deal with at a later date. My best advice for your face to face is keep saying to them "Please can you write X Y & Z down as it's extremely important" Also don't let them rush you & if they say "We'll come back to that point later" write it down & insist they come back to it. The first question I asked the assessor was what they knew about my rare muscle wasting disease & they had never heard of it. I gave her something to read & it was obviously not taken on board. I wish you all the luck in the world & pray you get a fair & honest assessor tomorrow. I wasn't sure whether I should have written this under reply or quick reply so I did quick reply, I hope you get it. Take good care & thank you so much.