Presentation


#1

Hi, I am going through the process of re claiming pip having been assessed and losing my care component and only receiving standard rate mobility. I did originally ask for a mandatory reconsideration with no change I did not take it to tribunal at this stage because I was not in the right frame of mind at that time. Now I have spent time looking through my letters and application form but one big question for me comes up.....why is your appearance manner and mobility in home taken into some consideration with the rest of info this I cannot understand why.

Should I stop worrying about my appearance, should I no longer care about my hair my clothing, does this demonstrate that my PD does not impact on my daily life?? The fact that I can take 30 to 45 mins to shower and dress and actually only shower in the evening because it's too much effort when it's a day I work, I no longer work full time I currently only manage 2 days and they are becoming difficult but financially I can't see how I can't and so my life work balance is crap because all my time and effort is put into maintaining these two days a week. Can I demonstrate better if I ware crappy clothes with in washed hair and don't smile?????

sorry for sounding off there is so much more in my head but it is doing my head in 


#2

I can see your frustration.  The people who assess whether or not we are eligible for PIP have absolutely no concept of the challenges that face us every day of the year.  They will see us when we are fully medicated and just about able to face the world.

 

What they do not see is the inability to get out of bed without taking a large quantity of drugs, waiting sometimes an  hour in the morning before they take effect and then trying to lead as normal a life as possible whilst knowing that you are going to be completely exhausted by the evening, unable to sleep which will leave you even more shattered by the following morning - ready to face exactly the same problems.  In the meantime, we have to hold down full time jobs just to nmake ends meet and to pay for the additional costs that we all have to pay for the privilege of having PD (fitted shoes to stop the curled toes blistering, physio which is never available on the NHS, osteopath, chiropodist, more frequent dental care etc. etc.)

 

Life with PD is challenging to say the least, but the harder you try to live with it and not be a burden on society ,the least likely you are to get any help. 

 

Sorry if I also sound rather bitter, but have also had a bad day with people making no allowances for my slowness and stiffness just because I am young for PD and dont look like I have anything wrong with me.

 

Keep fighting for it and in the immortal words of Norman Stanley Fletcher .......... Dont let the *&^%$£s grind you down.


#3

Newdidit,

 

Hi, try and get evidence from medical professionals to state what difficulties you face. We with pd know what that means sometimes other professionals do not. It is not personal a fault in the system thats all. citizens advice or free law centre may help you gather the evidence you need.  Take a deep breath and claim what is yours.  good luck x


#4

Oxford gills

 

Look to see if any trainee dentists in your area, I have my teeth done at a training practice much cheaper, x


#5

Dear Oxford gills and Teehee, just to say I have today been in touch with my local PD support worker, (actually I emailed her on Monday she rang me Tuesday and left a message and rang me again today so thank you) and she will be coming to see me next Thursday to complete an assessment/ supporting letter, a copy of which she will forward to my PD nurse who I have an appointment with on Monday 6th. She is also organising a home visit from a new department at the DWP who actually come out and complete the PiP form with you once I receive the form, while they are from DWP their role apparently is not to assess they are completely separate but set up to assist in completing these forms.

So with this much valued assistance from PD.org.uk my PD nurse and DWP I am feeling a little more positive and hopefully optimistic.

Will keep you informed x


#6

Great news ,  we all need a bit of help, those forms are not easy to navigate round. x 


#7

hey all i am due for a health assesment tomorrow @345 pm in oxford (a difficult time of day to get in and out of city centre )and am refusing my meds they want to see a mess they are going to get one it is the only way to do it i think just to show them the impact (not that they give a crap) .But the funny thing is on the next day i have my first consult with DBS team in London(@Queens sq).So why should i bother to go to London when some nobody is going to tell me there is nothing wrong with me and should go to work .Why should i listen to a highly paid neuro consultant when they are obviously so wrong .cofusing or frustrating ????? 


#8

Good evening all.....penfold I truly hope your day went ok today and best of luck for tomorrow.....after reading so many posts on this matter and not only my own personal concerns and reasons but taking all the comments and experiences with PiP I emailed my local MP and today I received this response


To: Penny Mordaunt MP, Minister of State for Disabled People, Health and Work, Department for Work and Pensions, Caxton House, Tothill Street, London SW1H 9DA

Dear Minister,

I am writing on behalf of my constituent , who has been kind enough to take the time and trouble to contact me with regard to her concerns about the way in which the new PIP system operates.

I attach below a copy of the e-mail which she has been kind enough to send to me, which explains her concerns extremely well.

I would be most grateful if you would be kind enough please on behalf of HM Government to consider this enquiry and to advise how her concerns might best be addressed.

Now I know it doesn't promise anything at all and is by no means going to change anything but who knows. 

I basically said how appalling this whole process was how it made me feel and not only me but I suggested that they come onto this web site to read all the posts and concerns and outcomes that people have had and how it has impacted on lives.......so we will see what happens....if anything