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Brain tumour and pip stopped after review .

bobtweeniebobtweenie Member Posts: 20 Connected
edited November 2017 in PIP, DLA and AA
 I have a cavernous sinus meningioma which is benign and inoperable . I was awarded pip in 2015 until June 2018 at both standard rate . The brain tumour is central in my brain pressing down on crucial nerves , it bled causing stroke symptoms resulting in a weak left side a numb face and six nerve palsy of the left eye . I had stereotactic radiosurgery in 2016 which makes me really tired . The tumour has not responded to treatment and is still there meaning I have 3 head MRI scans a year . 3 visits to the surgeons and MDT meetings with brain ENT surgeons and oncologists 3 times a year . I see the eye surgeon twice a year . I had my pup review in June and a home visit by a nurse from Capita in September who said she didn't need to see all my medical letters etc or medication which I take which is 12 tablets a day . Today I've received the dreaded letter from pip they've stopped my money . Surely that's right . 


  • janice_in_wonderlandjanice_in_wonderland Member Posts: 265 Pioneering
    I don't know what is happening to society but it's not right 

    I am v sorry you have gone through enough without having to fight another battle 

    i hope you win your case 
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Hi bobtweenie and welcome

    No it is not right but alas not uncommon

    Have you asked for a copy of the assessment report ?

    You only have a month from the date on your decision letter including postage back to apply for a mandatory reconsideration.
    It is important to understand the points system, descriptors and the criteria for an award. a good place to start is the self test on the B&W site


    there is also lots of info on this site about appeals

    Please come back with any questions


    Be all you can be, make  every day count. Namaste
  • bobtweeniebobtweenie Member Posts: 20 Connected
    I have requested a copy of the report and have been told I should receive it by Friday as they post out 2nd class . I’m really annoyed as unfortunately this money I do use for hospital visits. I did ask the man on the phone when was DWP nurses qualified in neurological conditions and he also agreed that the decision was very harsh . The decision maker has made a mistake in saying my circumstances has changed for one thing . I’m fuming 
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger

    Though only 20% of mandatory reconsiderations (MRs) succeed, 65% of tribunal appeals do.  Scope site (look under Advice and info), CAB site and Disability Rights site all have guides to MRs and appeals.

    PIP eligibility for points depends less on your diagnoses themselves and more on how these affect your ability to undertake daily tasks and to walk.

    Your assessor sounds incompetent, as many assessors are - which is why so many appeals succeed.
  • bobtweeniebobtweenie Member Posts: 20 Connected
    When I was first awarded in June 2015 I had less medical evidence than now . My daily needs have not changed as I put down on the ar1 form apart from my meds have increased . The decision maker agrees I have trouble moving around and engaging with other people but scores me a 0 . My husband was present at the home visit and he even said that the nurse or whoever sounded quite bemused why I'd been booked in for face 2 face . I just need that health report now . 
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    I'm so sorry that you're having to go through this @bobtweenie, especially as you say that you have even more medical evidence now. 

    Are you considering appealing the decision? If so, you may find this information on the appeals process helpful. Do let us know how you get on.
  • kevin888kevin888 Member Posts: 53 Courageous
    Hi I have a a brain AVM, now sealed with radiotherapy, leaving loads of side effects.
    I  had a 0 point assessment after high rate DLA. Glad you have asked for MR this may come back the same then go to Tribunal. I had an Occupational Therapist for consult, knew nothing about my neuro problems! Keep at them all the way. I have been waiting 6 months for tribunal but don't give up! How can they agree you have trouble engaging with people then 0 points, same as my assessment, they   told me I could go out alone without getting lost by sitting behind a desk? If you can see someone at CAB they helped me a lot. Also lots of help here.
  • bobtweeniebobtweenie Member Posts: 20 Connected
    I've just collected every single brain scan report from the radiologist through my GP . Again the last scan which was done in September tells that the tumour is encased around the cartoid artery and is still there . I've also spoke to cab this morning . 
  • bobtweeniebobtweenie Member Posts: 20 Connected
    @kevin888 received my health report yesterday and the assessor has lied . At one point I walked 6 metres during my assessment and apparently I was dressed appropriately for the day even though I was sat in pyjamas and dressing gown . Apparently I passed the eye test even though on the report it states that there is further medical evidence to report that my eyesight in left eye is not good due to having one pupil bigger than the other . Also I could stand on one leg and balance which I also wasn't asked to do . Again the report says there is further medical evidence to say that my balance is poor . My husband was present at the assessment and cannot believe the lies . The assessor was a nurse . So I spoke to a decision maker yesterday at pip and have lodged a complaint about capita and their so called nurse . The decision maker who i spoken too has said to highlight the report on the incorrect facts (in total we are talking about 7 ) send my latest radiologists reports in from the neurosurgeon and a covering letter . I have told the decision maker I am prepared to go to tribunal if mandortary consideration is declined and she said I don't think it will come to that . I asked how long I'm looking for a decision and she said about 4 weeks as they are up to date with paperwork . 
  • philipcarsonphilipcarson Member Posts: 10 Listener
    Sorry to hear all this i myself had a benign brain tumour had it removed but not all of it i since have epilepsy but it is under control now but the headaches are not good some days i applied for pip and got 0 points 
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Sorry to hear all this i myself had a benign brain tumour had it removed but not all of it i since have epilepsy but it is under control now but the headaches are not good some days i applied for pip and got 0 points 

    Hi Phillip and welcome

    When did you get refused ? did you/have you appealled  ?

    If we can help in any way, can you start a new thread to save confusion

    Be all you can be, make  every day count. Namaste
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Hi bobtweenie

    Sounds like you are on top of things. I hope you get the result you desreve without needing to go to tribunal

    Be all you can be, make  every day count. Namaste
  • CloudCloud Member Posts: 25 Connected
    [email protected]
    Did your PIP renewal get awarded in the end?
    Ive only just seen the post you wrote....

    I Was amazed that the similarities to my condition are almost identical..... I too have a sinus meningioma brain tumour that is inoperable. Mine too is encasing, surrounding and narrowing the carotid artery. Pressing on crucial nerves. I have MDT meetings with brain surgeon, neurologist, Nuero oncologist specialist nurse, neuro consultant and eye consultant and ENT. Have annual brain scans & am under eye consultant, ENT consultant and neurologist..

    I'm in the process of my first pip review. Just sent off the forms. I also sent my brain scans that shows it continues to keep growing. My recent one shows its now spread to my frontal lobe and optic nerve as well now.
    This causes me personality changes of which are depression & anxiety and am absolutely dreading the assessor and doing the face to face as I really struggle to explain myself f2f to strangers and my anxiety is going through the roof.

    Where the brain tumour is crushing my inner carotid artery (which is the artery that supplies blood & oxygen to the brain) will eventually cut off my oxygen & blood to my brain so will be like having a massive stroke. The consultant confirmed this outcome to me...and yet we have to try and explain 'how this affects us' to a stranger judging us. 
    I think this pip reviews puts added stresses on people who are already very ill. I am really hoping I can get through this next review but don't think I can continue to keep going through the process anymore on top of my condition. It is too draining.  I was hoping for a longer award this time (if at all)
    I'd be grateful if you could let me know the outcome of your pip renewal. I really hope that you got it awarded in the end.😊
  • bobtweeniebobtweenie Member Posts: 20 Connected
    Hi cloud . Yes eventually it went to tribunal and was awarded but then 6 weeks after that the dreaded Annual Review form came . I then had to go through another face to face at home with a lovely assessor . 4 months later I hadn’t heard anything so rang them to be told I had been awarded both enhanced rates and the decision maker had backdated the enchanced rates back to when it went to tribunal . They owed me a substantial amount of money and also I have been given an award of 10 years and they say I will be doing a light touch review as my condition is never going to get better . Don’t let the asssessment stress you out you will be fine . Good luck and let me know your outcome .
  • CloudCloud Member Posts: 25 Connected
    Hi Bobtweenie,

    I'm so glad that you got it in the end.  It's awful that you had to go all through the process again though so soon after getting the tribunal award.

    I think this causes vulnerable/seriously ill people a lot of added stress and worry to keep reapplying, on top of already struggling with their condition. 
     Evenmoreso when it is obvious that our condition is not going to go away.  I sent evidence of this, that I continue to deteriorate as it is a progressive neurological disease, and continue to get worse and evidence of no realistic chance of any improvement.   
    I have really struggled with the added stress which is making my conditon worse, and sent evidence of this from my Macmillan counsellor.  I really hope this time I can get a longer award so that I will not have to go through this again.
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