PIP, DLA and AA
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Is it worth me even applying for PIP with M.E.

sue66sue66 Member Posts: 124 Pioneering
Hi everyone, i have M.E. had this for many years which makes it hard for me to do house work like it needs doing but ive read not being able to do house work gives one no points?  I have to be driven everywhere as cant walk far, I cant keep my arms above my head for to long. I feel exhausted just walking up one flight of stairs, I feel anxiety and nausea every day and suffer from social phobia.  I can dress and wash myself, im in pain every day. However i dont feel i stand a chance in getting the PIP, family are putting pressure on me to apply when the form comes in but im under no consultant, on no medication with basically no proof or back up from any professional Was diagnosed . 21 years ago by consultant up hospital  who has since retired.   Stupidly i never kept the original letter. 
On reading what so many people are suffering from on hear and being put through emotional and mental hell i dont feel i want to apply.  Has anyone on hear successfully applied and got any awards at all? Im at present on high middle rate mobility and low rate care with the DLA.  Just typing this is making my stomach knot up thinking about it. Silly i know! Im 67 in Feb.

Replies

  • debsidoodebsidoo Member Posts: 327 Pioneering
    Hi Sue66
    I’m not certain but I think the upper age limit for claiming PIP is 64.
    it may be worthwhile speaking to a benefitts advisor about any other entitlements.
    Debsidoo.
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Hi Sue

    If you do not apply then you benefit will stop, so you have nothing to lose by making a claim.
    As a young lady of 66 this is the only occasion that you can claim PIP mobility award, if you don't claim now and fight for what you are entitled to, your mobility benefit is gone for ever.
    If you don't claim PIP now then the only benefit you will be able to claim in the future is AA.
    Medical evidence is not necessary for a succesful claim, it is useful but not essential, PIP is about functionality and the assessment is about what help you need with some daily activities. When I made my claim I sent no evidence at all, just the claim form. I had a f2f as most people do and was awarded enhanced mobility standard care.
    From what you have said you should be entitled to the benefit, and if you prepare and understand how it works there is no reason why you should not receive an award

    CR
     
    Be all you can be, make  every day count. Namaste
  • sue66sue66 Member Posts: 124 Pioneering
    Thank you CR ,maybe i will then, why is it though many far worse than me are coming away with nothing? Its reading these that makes me feel  1/ i dont stand a chance and 2/ am i even bad enough? Take it the f2f means face to face. I took the online pip form filling test and it came out i scored enough points on both to get lower rate but then of course its not before an assessor is it which seems to be causing so much grief for so many.  Presume now we are in 2018 i should get my application for PIP like any day now. Oh and thanks for referring me as a young lady of 66! Can i ask for a home visit or do you have to get a doctors letter for this?
  • sue66sue66 Member Posts: 124 Pioneering
    debsidoo said:
    Hi Sue66
    I’m not certain but I think the upper age limit for claiming PIP is 64.
    it may be worthwhile speaking to a benefitts advisor about any other entitlements.
    Debsidoo
    Hi debsidoo
    Your right to a point hear, If hubby had been born a year earlier in 1948 he wouldn't have had to apply for the PIP at all but would have been left alone to carry on with his DLA. He was born 1949  I was born in 1951 so also lost out and will have to apply for PIP to keep any money. If though i had never applied and got the DLA in the first place i would then not be getting the application to apply for the PIP which replaces the DLA and would have had to go for the AA  which is even harder i think to get but im not sure if you still have to be seen by an assessor or not. 

  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    @sue66

    You have nothing to lose by applying for PIP when asked because as CR says your DLA will stop anyway and this will be your last chance to apply for PIP mobility.  If you don't get the PIP award you want after assessment there is mandatory reconsideration (MR) and tribunal appeal.  I had to go all the way to tribunal to get what I deserved but I did win my appeal earlier this year.

    Plenty of people on here have been awarded PIP for all sorts of conditions and many have not had to go to appeal or even to MR.

    PIP is awarded for how your condition affects your ability to perform certain essential daily activities and your ability to walk and/or plan journeys.  You might be able to wash and dress yourself but this may take you more than twice as long as a non-disabled person.  Therefore, you should score points.  And having to use aids, especially if you struggle even using aids, should win you points.

    The DWP should ask you if you want the medical evidence submitted when you first claimed DLA to be included in your PIP application.  Say yes, of course.  The only medical evidence available in my case was the DWP doctor's and my own GP's reports from 1998.  I didn't submit any recent reports because of course neither my consultant nor my GP know in detail how my conditions affect me on a daily basis.

    Disability Rights UK site (DR) has a good guide to PIP.   Make sure you submit a 7 day diary with your PIP claim.  List all the aids you use in your claim form and in your diary. DR site has a draft diary that you can adapt.

  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    To get a home visit you will generally need a very specific GP;s letter stating that you cannot attend a centre.
    The change from DLA to PIP is behind schedule, you could receive your "invite" at any time.
    It is true that some people are being denied awards that they deserve, PIP has been made deliberately hard to get. People only come to the forums when they have problems so we never see the many claims that are straight forward.
    We hear a lot about dishonest assessors but there are other factors that are common.

    First, people don't prepare and research what is required for a PIP award. This is especially true when changing from DLA to PIP.. Having any sort of condition is not enough, PIP doesn't care what is wrong with you, it only considers how you are affected. For this reason medical evidence, although important, is not needed. Your GP is unlikely to know how you are affected in daily life. Many people with long term conditions seldom have any new evidence.

    Secondly, we all develope coping mechanisms. We find ways to do things and hide our disabilities even from ourselves. We have to just to get through the day. This becomes second nature, if you had a lifetime DLA award it didn't matter but under PIP you have to become disabled, you have to get rid of your coping strategy just for the assessment. How can an assessor make a proper recommendation if we hide our difficulties ?. Do you really expect them to take your word for it ?. It is hard and it almost feels like cheating but you do have to be the real you, you are not making anything up or exaggerating.

    Thirdly, some people expect the DWP to ask for medical evidence where appropriate. In most cases they don't. If you do have supporting evidence then you should send copies but don't rely on it. You do need to make your case using the descriptors and referencing each descriptor to the exact place in your evidence that shows how and why you meet the descriptor. Don't expect the DM or the HCP to trawl through the equivalent of "War and Peace" for you. Show them where to look, make it idiot proof.

    Of course it is a stressful time, nobody likes to talk about their problems especially to a stranger. We deny our problems to ourselves most of the time and don't want to think about them. There is no guaranteed way to get the award you deserve, no formula to follow. Try to think like an assessor, what would you need to see?
    There are other more specific things that you need to be aware of, like how to answer questions. Assessors are taught interogation techniques and how to ask different types of questions to get the answers they want, very much like a pushy salesperson.

     Sorry for the long post, I am sure that some of our knowledgeable members will add different ideas. Do your preparation and it doesn't have to be so stressful

    CR
    Be all you can be, make  every day count. Namaste
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    I completely agree with everything CR has said except the evidence part. I've heard of very few people who have been awarded PIP without evidence. As every condition affects people different it's important to show and prove how that particular condtion affects you daily. If the evidence specifically points to those descriptors, then even better.

    If the evidence you send is pages and pages of written letters, then i'd advice going through those letters and high light the most importmant parts. When i applied for PIP for my daughter there were 2 specific letters that were the most important part of my evidence for her. I knew there was no way they would sit there and read through over 30 pages. A lot of pointers in the letters proved that certain descriptors applied to her, out came the high lighter pen. Future appointment letters aren't classed as evidence. They don't care what appointments you have coming up. What they want to know is how your condition affects you NOW.

    Make sure to send all of your evidence (copies only) with your form. I know they very rarely read anything during an assesssment. I've also heard so many times that people have tried handing their evidence in at their assessment, only for the HCP to refuse to take it. This happened to me with my daughters assessment. I had 1 extra piece of evidence and he asked me to send it to DWP. It's far too late to send it there at this point. Once your file with your report is returned to DWP with the HCP recommendations in it, the decision maker most likely dosen't read any of your evidence you sent. This is because the assessment report plays the biggest part in making that decision. (my oppinion)

    I can't advice people enough, especially those transfering from DLA to PLEASE do your research. PIP is different to DLA. The PIP self test is a good start, even though there's no gaurentee you'll score that but it will give you some understanding at least. There's so much advice on the internet. Yes lots of bad stories too, so don't be scared by everything you read. As CR has said, we don't often hear about the good stories.


    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • janice_in_wonderlandjanice_in_wonderland Member Posts: 265 Pioneering
    @CockneyRebel
    Yes! You're so right indeed! 

  • [Deleted User][Deleted User] Posts: 215 Listener
    I know somebody that got both enhanced with no evidence at all just got appointment to go to the f2f
  • [Deleted User][Deleted User] Posts: 215 Listener
    To get a home visit you will generally need a very specific GP;s letter stating that you cannot attend a centre.
    The change from DLA to PIP is behind schedule, you could receive your "invite" at any time.
    It is true that some people are being denied awards that they deserve, PIP has been made deliberately hard to get. People only come to the forums when they have problems so we never see the many claims that are straight forward.
    We hear a lot about dishonest assessors but there are other factors that are common.

    First, people don't prepare and research what is required for a PIP award. This is especially true when changing from DLA to PIP.. Having any sort of condition is not enough, PIP doesn't care what is wrong with you, it only considers how you are affected. For this reason medical evidence, although important, is not needed. Your GP is unlikely to know how you are affected in daily life. Many people with long term conditions seldom have any new evidence.

    Secondly, we all develope coping mechanisms. We find ways to do things and hide our disabilities even from ourselves. We have to just to get through the day. This becomes second nature, if you had a lifetime DLA award it didn't matter but under PIP you have to become disabled, you have to get rid of your coping strategy just for the assessment. How can an assessor make a proper recommendation if we hide our difficulties ?. Do you really expect them to take your word for it ?. It is hard and it almost feels like cheating but you do have to be the real you, you are not making anything up or exaggerating.

    Thirdly, some people expect the DWP to ask for medical evidence where appropriate. In most cases they don't. If you do have supporting evidence then you should send copies but don't rely on it. You do need to make your case using the descriptors and referencing each descriptor to the exact place in your evidence that shows how and why you meet the descriptor. Don't expect the DM or the HCP to trawl through the equivalent of "War and Peace" for you. Show them where to look, make it idiot proof.

    Of course it is a stressful time, nobody likes to talk about their problems especially to a stranger. We deny our problems to ourselves most of the time and don't want to think about them. There is no guaranteed way to get the award you deserve, no formula to follow. Try to think like an assessor, what would you need to see?
    There are other more specific things that you need to be aware of, like how to answer questions. Assessors are taught interogation techniques and how to ask different types of questions to get the answers they want, very much like a pushy salesperson.

     Sorry for the long post, I am sure that some of our knowledgeable members will add different ideas. Do your preparation and it doesn't have to be so stressful

    CR
    Excellent advice
  • [Deleted User][Deleted User] Posts: 215 Listener
    I completely agree with everything CR has said except the evidence part. I've heard of very few people who have been awarded PIP without evidence. As every condition affects people different it's important to show and prove how that particular condtion affects you daily. If the evidence specifically points to those descriptors, then even better.

    If the evidence you send is pages and pages of written letters, then i'd advice going through those letters and high light the most importmant parts. When i applied for PIP for my daughter there were 2 specific letters that were the most important part of my evidence for her. I knew there was no way they would sit there and read through over 30 pages. A lot of pointers in the letters proved that certain descriptors applied to her, out came the high lighter pen. Future appointment letters aren't classed as evidence. They don't care what appointments you have coming up. What they want to know is how your condition affects you NOW.

    Make sure to send all of your evidence (copies only) with your form. I know they very rarely read anything during an assesssment. I've also heard so many times that people have tried handing their evidence in at their assessment, only for the HCP to refuse to take it. This happened to me with my daughters assessment. I had 1 extra piece of evidence and he asked me to send it to DWP. It's far too late to send it there at this point. Once your file with your report is returned to DWP with the HCP recommendations in it, the decision maker most likely dosen't read any of your evidence you sent. This is because the assessment report plays the biggest part in making that decision. (my oppinion)

    I can't advice people enough, especially those transfering from DLA to PLEASE do your research. PIP is different to DLA. The PIP self test is a good start, even though there's no gaurentee you'll score that but it will give you some understanding at least. There's so much advice on the internet. Yes lots of bad stories too, so don't be scared by everything you read. As CR has said, we don't often hear about the good stories.


    Excellent advice
  • debsidoodebsidoo Member Posts: 327 Pioneering
    Sorry Sue66 I misunderstood here.I thought you were a first time claimant.
    Good luck.x
  • sue66sue66 Member Posts: 124 Pioneering
    Well its now June 15th 2018 and still no brown envelope about going from DLA to PIP.   Im still undecided as to what im going to do. From what ive been reading things seem to be worse and more difficult than ever to get the PIP.
    Id like to know just how many with M.E. have had successful results and did they really feel they had to arrive wearing no makeup to look the part. This is what ive read on other forums.Really? Im on no medication and unfortunately i threw away my letter from rheumatologist  stating in his opinion i had M.E. which was like 23 yrs ago! From the start of when the PIP was introduced i read that even then M.E. was one of the hardest to get PIP for. Now it seems to apply to do many other health conditions as well.Thinking ill just manage on my state pension which im very lucky to at least have some form of income. I so feel for those that arnt state pension age  and forced to sign on for job seekers with this wretched condition.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    sue66 said:
    Well its now June 15th 2018 and still no brown envelope about going from DLA to PIP.   Im still undecided as to what im going to do. From what ive been reading things seem to be worse and more difficult than ever to get the PIP.
    Id like to know just how many with M.E. have had successful results and did they really feel they had to arrive wearing no makeup to look the part. This is what ive read on other forums.Really? Im on no medication and unfortunately i threw away my letter from rheumatologist  stating in his opinion i had M.E. which was like 23 yrs ago! From the start of when the PIP was introduced i read that even then M.E. was one of the hardest to get PIP for. Now it seems to apply to do many other health conditions as well.Thinking ill just manage on my state pension which im very lucky to at least have some form of income. I so feel for those that arnt state pension age  and forced to sign on for job seekers with this wretched condition.
    Hi,

    PIP is not awarded based on a diagnosis, it's how those conditions affect you daily. You can't compare 2 people when it comes to claiming PIP because all conditions affect people differently. What might affect 1 person, my not affect another.

    Evidence will be needed to support a claim, if you decide to go through with when the time comes. If you don't then your DLA will stop. Really speaking you have nothing to lose by starting the claim off when you eventually receive that letter. There's a lot of people still waiting to be transferred across, so you're not the only one.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • markyboymarkyboy Member Posts: 368 Pioneering
    Hi i claim pip and get standard daily living and enhanced mobility i was diagnosed with ME 6 years ago after a viral infection and it takes a long while to get a diagnosis because other conditions with similar symptoms have to be ruled out 
    The DWP recognise ME and if you go on the ME association website you can find an article which is called claiming PIP with ME.
    I would not worry about your diagnosis being a long while ago just get your Doctor to confirm this as ME is a long term neurological condition which changes your life completely and because there is no specialist treatment and medication for it people tend to dismiss it
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Just thought I'd add for anybody following this conversation, Action For M.E have recently welcomed a new benefits advisor to their welfare and benefits support service- might be worth looking into for more specialist guidance if you're living with the condition! 
  • sue66sue66 Member Posts: 124 Pioneering
    Thanks everyone for all your replies and helpful links.Still waiting to receive the form to apply for the PIP, expected to hear months ago but im not complaining lol.  Just wanted to add that when hubby went for his f to f assessment he took along a page from the paperwork from when he went to a tribunal where a specialist had confirmed his diagnoses.  Even though this was years ago the assessor said oh this will really help and took a copy, this is why i regret not keeping my original diagnoses confirming i def has M.E. It seems they can take this into account, well she did any way.
  • sue66sue66 Member Posts: 124 Pioneering
     Update, now got PIP form, needs to be returned by the 19th July, Waiting on gp to track down original letter from consultant like over 20 yrs ago who diagnosed me with M.E.   I have  printed out all descriptors questions and seen how many points each one gives, so I can do a rough copy first before filling in main form, not very hopeful, how many points does one need to get to get even standard rate please?  
  • [Deleted User][Deleted User] Posts: 587 Listener
    edited June 2019
    Did you ask for a 2 week extension?

    8 points for standard.

    I don't know if this would help you any. It's about form filling.

    https://community.scope.org.uk/discussion/56365/pip-form-filling
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Do be aware that PIP isn't about a diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors. A diagnosis letter doesn't really tell them anything about how your conditions affect you. I'd advise to send other evidence that supports this.

    When filling out the form you should put as much detail as possible, adding 2-3 real life examples of what happened the last time you attempted that activity for each descriptor that applies to you.

    Expect a face to face assessment because most have them. Waiting times for this will depend on backlog in your area. If a home assessment is needed then you'll need a letter from your GP stating why you can't attend the assessment centre but if you attend other appointments then this can go against you. Good luck.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    See if you can get f2f advice on your application from CAB or similar.

    It's a good idea to include a 7 day diary with your application.  Disabilty Rights UK site have a draft diary you can adapt.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    This is some great advice and I hope it goes okay for you @sue66. Please do let us know if there is anything else we can do to help :)
    Community Partner
    Scope

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  • sue66sue66 Member Posts: 124 Pioneering
    Thanks everyone, im beginning to get the picture now, Strange though when hubby went for his PIP assessment now coming up for 3 years ago  he took with him a document from his folder of a consultants  statement  about his diagnoses and his opinion that his not expected to improve at all. the assessor said oh this very useful yet ive read no point in turning up at assessment with any paperwork on the day.?  Is this true ?  

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Some will accept it from you on the day of the assessment, some won't. If you have the evidence to send with the form then this is really when you should send it.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    It is better to submit all relevant evidence before your assessment, but if you do obtain something extra take a copy with you
    Be all you can be, make  every day count. Namaste
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