Loss of car following pip

Living with Parkinson's Work, benefits and money
1

Good evening

i apologise if there is already a thread re this topic but I just need to get this down and hopefully get some advice please

I received DLA with low rate care and high rate mobility for the past 5 years which enabled me to register on the motobility scheme and which in turn has enabled me to remain at work all be it for just 3 days a week for 6 hours each day.

I have just had my PIP decision and have lost my care component and have only been awarded 8 points out of 12 for moving around ( I can stand and move unaided for 20 meters but no more than 50)

I have been awarded 0 points out of 12 for planning and following a journey. So I contacted the DWP to ask for a mandatory reconsideration.

A gentleman rang me yesterday (Sunday) to discuss this.Care component: I stated that despite writing in my application that I required a dossett box tab time super 8 to ensure I took my medication on time and I stressed that my meds change as my symptoms alter and how complex this can be, I also stated that my first meds at 6.30 am can be difficult to take out of the dossett box due to stiffness of fingers and reduced dexterity I received 0 points. I have also stated that my partner cooks the main meal at least 4 days out of 7 because following work I am so fatigued I usually get home at 3pm and go to bed I am so exhausted. I received only 2 points because I used an aid or appliance ????

Mobility component: when I reported that I did not say to the assessor that I could follow an unfamiliar journey and that I stated I would not be able to use public transport alone he said it was not about the physical aspect of the journey it was awarded on my cognitive capacity to drive ? 

I feel completely at a loss at what to do now and that I read the form entirely wrong? And does it make any difference to the fact that without a car I cannot do my job which is difficult enough as it is to maintain but without my work I cannot pay my mortgage so what do I do? I realise that fingers crossed I will receive £2000 pounds two weeks after retuning my car and I will need to find another car in that price range. Any advice would be so gratefully received 

2

Hi newdidit,

I'm sorry to read you're at a loss at what to with your PIP decision.

Here are some threads about PIP for you to read through: http://bit.ly/29LxZaR There might be some useful information in there for you. We also have a PIP information sheet here: http://bit.ly/29IAkVC

Please feel free to contact our confidential helpline 0808 800 0303 if you would like to discuss this a bit more.

I'm sure there are some forum users who are able to share their experiences with PIP or have some advice for you.

All the best,

Ilona (Moderation Team).

3
Did you not get a parkinsons support worker to help you fill forms in i am on dla high mobility middle care when did they get in touch with you to swap over.my pdsw said i should get enhanced rate on both. Had my driving license surrender last year.
4

To be fair gus no I didn't, I read and read so much info, guidelines logged onto support websites including this one.maybe that's what I should have done I'm not sure. If I remember correctly my forms had to be returned by the end of April and they contacted me to say I had to apply for pip just before that. Without being too cynical what you think and what your pdsw thinks, which is correct by the way, may not be the same as the assessor and the DWP case manager think......I really really cannot see these assessments as anything other than a cost cutting exercise.....that's not because of my own situation but for those that I know who are in a more difficult position than me have been reduced from both high rates to the lowest care rate and standard mobility my case in point has MS diagnosis progressive form how do you possibly come to that judgement I ask you.

Do you know, sorry gus, I'm on a rant now......why oh why do I feel like I'm going bloody cap in hand begging for this....it goes against everything I hold good in my heart for some pompous shit person who came up with this ridiculous assessment did I ask for a diagnosis of PD at 46 ....don't think so.....did I ask not to be able to work more than 18 hours a week.....for 4 sodding years as a single parent to two boys I drove 120 mile round trip twice a week to study at uni I worked the other three days I never ever claimed anything at 41 I gained my degree at 46 diagnosed with PD at 55 I'm still working just ....how dare they decide that my life is not impacted by PD sufficiently ......they have not got one idea....and I'm not going to say I hope they never get into a position to find out first hand because I would be lying.......see this is what happens when you don't sleep.....get a bit mouthy......sorry gus.....think I need to challenge this anger to an mp or someone ...bye x

5

I'm so sorry to hear about the situation you find yourself in and can understand your frustration.  But please, please don't dismiss the idea of seeking help from your PD support worker and/or the helpline.

I do have personal experience of the help that a support worker can give when dealing with 'officialdom'. 

A support worker will know how to present your situation in a way that will give you a better chance of a good outcome. It is worth asking for help to reverse the decision. 

Please don't give up. 

With my best wishes 

Worrals

6
Yeah sometimes pdsw will help you through your tribunal. It makes me sick aswell when i finished work and had to cliam benefits it made me feel like a black sheep.i recently put a cliam in for a wet room i got accepted local council put the money up but there was a short fall i had to find £900 which i never had social phone up and said sorry i could not have it done.then she said if my wife gave work up became my career we would get it.what's world coming to.
7
Could you please tell me how did your story end? Do you receive higher rate now after mandatory reconsideration? Thanks
8

To anyone filling in PIP or ESA forms in get help and photocopy the forms 

9

Hello  Newdidit

                               This  sort  of  treatment  really  sticks in  my  throat,  the  folks  who  need  it  will  have  it  taken  and  given to the Save Buck  house  fund or   the  bring  back  the  royal  yacht  fund,  or overseas aid  to  India or any  other   country,,  what   about  us  first,

                                                              sorry  you   lost  out  but  dont  let  them off  fight  for   it

 

                                                                            FED

10

Hello  Bill

                    We  have  a  chap  coming  next  week  as  the  form  has  completely  flummoxed   us so  yes  everyone  ask  for  help,, SHY   BAIRNS  GET  NOWT.

 

                                                                       FED

11

cool 

                   Hello  the  PIPS  guy  called at 2pm on the dot, (a type  of Lithuanian moped )  and  filled  in all  thee bits we couldnt work  out,,,all of it ) also  I have been  saving  all  the pips  from  fruit I  have eaten over   the last year  when  I plonked the  large jar on  the  coffee   table  he  was  impressed (if you plant  them  you  may  lose  benefit)  is that  all government employs are  told  to  say,, and   of  course 15   seconds  before  he  arrived , my  hearing  aid vapourised so I couldnt hear  a  word  he  was  saying,, bl/???dy  fantastic  does  anyone else  have  these  mysterious guests  that  nick  important  things  from  under   your  nose,  we  still  have  not  found   it,  the  only  place  we  have  not  looked  is  the  chim  chiminy  chim chim  cheroo if  I do find  it  the  air  will  turn  blue" on  the  roof  and  I  would  have  remembered climbing  up  there  wood int  eye                                                               FED    Will tryAVATARING  again

                                        OH the pipguy said I will  retain  the  higher level  of  pip  whatever  it  may   be

12

I'm just about to embark on this particular adventure. awaiting PIP2 form

Everything I've seen about this indicates a cost cutting exercise is the first priority of PIP - very little to do with correct distribution of benefit.

I have notified PD advisor but  I'm not looking forward to this. I agree with your little rant - Am I supposed to have got better since my last assessment?? Hope yours works out for you.....

13

 

 

 

   Hello newdidit

                               Rant  away  as shoog  says this is HMGt latest ruse to take from  the needy and give to the dont needy, its a shameful situation neither  myself or my wife could fathom out the questions eg  what colours green,,,, just  joking but  you  get  my  drift,  so  we  asked  for  someone  to  help,  in  short I cant do  anything without help,  feed  dress visit pals etc.shameful  I  have not received my result yet will let  you  know                                     GREETINGS  FED

14
I asked for Parkinson's support worker twice to help with form* no one contacted me. N9w I have ATOL coming Monday 16. I too rely on my car for work, 8f they take if away I join the thousands 9f unemployment and become homeless. No exaggeration!
15
Hi Pdiddy; Please let us know after your assesment next Monday? I have a feeling that after this review form I will have an assesment too..
16

Hi Pdiddy, 

I'm a little concerned about your comment, I'm very sorry to hear about the lack of support. We'd like to fix this, I'm going to send you a private message and we can go from there. Is that okay?

 

Kat

17

I asked parkinsons support worker and  was told they were not allowed to help with forms and advised to go to citizens advice .  They were very helpful.  Best of luck 

18

Hi all, I will be honest and say I have not really been online for some time so apologies for not responding. I did ask for a reconsideration of my PIP assessment and there was no change from the original decision. So I went from low rate care component on DLA to no care component on PIP and high rate mobility on DLA to standard rate on PIP. This has resulted in the loss of my car, increased out goings for car tax, insurance and maintenance as I need a vehicle in order to work ( which at this present time is 16 hours a week over 3 days and becoming increasingly difficult to maintain).

I will say I have been extremely despondent since and in a way ignored any thoughts of re application because I feel like I am begging.

Some of the explanations of how they came to their decisions I have detailed below; this is actually the first time I have actually read through it  properly and took real notice, that sounds quite pathetic now but that is how I felt at the time.

Care:

I said I had difficulties preparing food, dressing and undressing, they agree I have difficulties and use aids to manage.....but I could raise my arms above my head at assessment

I said I had difficulties taking nutrition and medications.....I use a tab time super 8 dispenser which has an alarm to prompt medication times; there are days particularly following work when I cannot sit at the table to eat my fatigue and back pain is so severe I just cannot sit and eating is the last thing I feel like doing. My partner cooks the main meal at least four days out of seven sometimes more.

I said had difficulties with toilet needs .....I did not I answered no although I did state that I now get up in the night and on waking and taking my first meds I am usually unsteady and my partner always watches me to make sure I am safe as I "furniture walk" there and back.

I said I had difficulties communicating verbally......I said no

I said I had difficulties reading and understanding signs symbols and words.....I said no

I said I had difficulties engaging with people face to face and making budget decisions......I said no

But I did state that I have problems reading and focusing at times even with glasses because of fatigue which the optician has considered it may be due to muscle fatigue. I also stated that I have had episodes of withdrawal from going out socially because of low mood and because all my energies are put into maintaining my work role and that I do not have a good life work balance.

Apparently at assessment I understood the process, maintained eye contact, engaged and answered questions appropriately, showed good short and long term memory, I read information with my glasses, I was able to speak with ease and be understood. So this resulted in no care component.

Mobility:

I said I have difficulties planning and following journeys, the actual questions says do you need help from someone to get to a location unfamiliar......I said sometimes and added to the extra information that I only drive locally and to and from work if we were going any where more than 30 mins drive or some where I do not know then I do not drive because I do not consider myself as aware and this makes me stressful which exacerbates my symptoms and that I found driving requires a lot more concentration. At assessment I was asked if on my way to work there was a detour would I be able to follow that detour I said yes I would because I know my local area like the back of my hand so any detour would not really take me off a familiar route.....big mistake I think.

Apparently I also had a musculoskeletal examinations....is that raising your arms above your head??

It also states that he cannot consider my difficulties walking up inclines or un even surfaces outdoors.

Sadly now I am dissecting this I can see the errors, the reconsideration letter stated the following:

At assessment I demonstrated adequate cognition memory and concentration . No specialist evidence from a mental health team has been provided to support !! 

I have possibly divulged a lot of personal info here but I would appreciate any feedback 

thank you for taking the time and energy to read such a long post xx

 

19

Sorry this me again......I thought that PIP was all about how your disability affected your life not how many boxes did I fit into to ?

20

Hi   I think you can appeal again I am in the process of doing so.  I was told to gather evidence from professionals physio, gp etc as complex as needs vary and you need to assessed taking into account your worst times days.  There is a good website but will need to have a look now on  google. Parkinsons uk have benefits helpline to try.