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Mobility vehicle

hunnybunny123hunnybunny123 Member Posts: 13 Connected
I recently had my mobility vehicle taken off me, they said its Because I was able to plan a journey. I Have fibro myalgia spondylitis top and bottom of my spine and osteoarthritis in both knees. The time of my pip assessment I was able to discuss my illness, but most days I frequently forget thing's I have what is known as a fog. I'm in constant pain and have fallen 3 times now  And they expect me to get a bus or taxi to go out  I could of appealed but I just felt so tired of trying to get them to believe me. I gave up. 😩😩

Replies

  • Ami2301Ami2301 Community champion Posts: 7,123 Disability Gamechanger
    Hi @hunnybunny123 sorry to hear what has happened. You're not alone as many members of our community have had their Motability car taken back, unfortunately. Have you missed the deadline for challenging their decision?
    Community Champion
    Disability Gamechanger - 2019
  • wilkowilko Member Posts: 2,182 Disability Gamechanger
    @hunnybunny123, hello and welcome I am going to be harsh and to the point no point in being softly softly. Many claimants lose their cars migrating from DLA to PIP because they do not meet the criteria of the descriptors of PIP. In your own post you have admitted that your in constant pain fallen three times and frequently forget things not an ideal situation to be in while driving. But was, is there another person who could drive the car on your behalf and enable you to keep the car? Sometimes we have to think long and hard and make the decision that we are not safe enough to continue driving for our own safety and that of everybody else and hand in our license.
  • hunnybunny123hunnybunny123 Member Posts: 13 Connected
    I don't drive never Have  My hubby is my carer and he drives the car. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    edited April 2019
    Hi,

    For the mobility part there's 2 activities, following and planning a journey and moving around. The conditions which you mention above won't score you any points for following and planning a journey because this is for mental health, cognitive and sensory impairments.

    If your conditions make it difficult for you to walk then it's the moving around part that you should have concentrated on because this is what you could score points in.

    Was it a PIP review or did you transfer from DLA?
    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.
  • twonkertwonker Member - under moderation Posts: 617 Pioneering
    I don't drive never Have  My hubby is my carer and he drives the car. 
    Have you not thought about buying your own car? It would remove the fear of losing a car at the whim of the assessor/DWP.
    Many that have lost out with Motability have gone that way. In fact a large proportion of ex Motability users buy their Motability car. They have known it from new and it is far cheaper than buying a new car. 
  • cristobalcristobal Member Posts: 965 Disability Gamechanger
    twonker said:
    I don't drive never Have  My hubby is my carer and he drives the car. 
    Have you not thought about buying your own car? It would remove the fear of losing a car at the whim of the assessor/DWP.
    Many that have lost out with Motability have gone that way. In fact a large proportion of ex Motability users buy their Motability car. They have known it from new and it is far cheaper than buying a new car. 
    I agree with @twanker.....unless you particularly want a brand-new one you can get some good deals on 2nd hand. Cheaper, and it's yours so you don't have to worry about  the problems that you're having with DWP...

    It's well worth considering - although you will have to fund it yourself if DWP don't reinstate your mobility award.....
  • twonkertwonker Member - under moderation Posts: 617 Pioneering
    cristobal said:
    twonker said:
    I don't drive never Have  My hubby is my carer and he drives the car. 
    Have you not thought about buying your own car? It would remove the fear of losing a car at the whim of the assessor/DWP.
    Many that have lost out with Motability have gone that way. In fact a large proportion of ex Motability users buy their Motability car. They have known it from new and it is far cheaper than buying a new car. 
    I agree with @twanker.....unless you particularly want a brand-new one you can get some good deals on 2nd hand. Cheaper, and it's yours so you don't have to worry about  the problems that you're having with DWP...

    It's well worth considering - although you will have to fund it yourself if DWP don't reinstate your mobility award.....
    I know of one person that bought their mobility car quite a few years back when he realised that PIP was on the horizon. The cost to him was his Mobility payment which was equal to the finance payments over 3 years. He still continues to be paid the mobility element of PIP now and the £260 a months he gets funds the payment for another car. He is to take delivery of his next car next week, a top of the range 18 month old Range Rover Evoque. After his part ex he has borrowed £10,000 over 4 years - £250 a month. 

    He started off with a Motability Vauxhall Astra all those years ago!

  • KG100KG100 Member Posts: 178 Pioneering
    Due to the new PIP rules it probably is best to buy your own car now.
    But on top of the car repayments you also have to pay for the extras like insurance, breakdown and recovery, and the other things that come with the motability deal.
    It can all work out rather expensive over the year.
  • madquasimodomadquasimodo Member Posts: 130 Courageous
    I think it happened a few year back when the Mobility boss reported around 1m salary or something close, the DWP really got interested in mobility as it was seen as perk, I get lost in the argument "to have a car requires cognitive and dexterity skills, therefore you don't need one" I remember someone in a wheel chair lost hers, seemed harsh, you can get around, you now don't need one. I know a lot of pressure comes down the line and goalposts move, I bet most people know someone driving one who "seems" not to need it.
  • djbantiquesdjbantiques Member Posts: 43 Connected
    ilovecats said:
    Hi,

    For the mobility part there's 2 activities, following and planning a journey and moving around. The conditions which you mention above won't score you any points for following and planning a journey because this is for mental health, cognitive and sensory impairments.

    If your conditions make it difficult for you to walk then it's the moving around part that you should have concentrated on because this is what you could score points in.

    Was it a PIP review or did you transfer from DLA?
    Poppy is correct. Fibromyalgia is a physical condition that generally will score in mobility due to the pain when walking. To score Enhanced and therefore a mobility car you have to only be able to walk 20m or less, which generally only those who are very disabled cannot do.

    Activity 11, even if someone score 11F they will not be entitled to a mobility car, due to the cognitive, sensory or mental health impairment that would prevent them from driving safely 
    Wrong. Fibromyalgia can also affect cognitive ability and is not purely a physical condition.
    As an ex health care professional I would have expected you to know this. Maybe this explains why so many of the assessors get it wrong.
  • Government_needs_reformGovernment_needs_reform Member Posts: 851 Pioneering
    edited April 2019
    Re

    Fibromyalgia and cognition. ... Cognitive symptoms in these patients may be exacerbated by the presence of depression, anxiety, sleep problems, endocrine disturbances, and pain, but the relationship of these factors to cognitive problems in fibromyalgia patients is unclear.

    Cognitive Impairments in Fibromyalgia Syndrome: Associations With Positive and Negative Affect, Alexithymia, Pain Catastrophizing and Self-Esteem

    Carmen M. Galvez-Sánchez, Gustavo A. Reyes del Paso, and Stefan Duschek

    Abstract

    Fibromyalgia syndrome (FMS) is a chronic condition characterized by widespread pain accompanied by symptoms like depression, anxiety, sleep disturbance and fatigue. In addition, affected patients frequently report cognitive disruption such as forgetfulness, concentration difficulties or mental slowness. Though cognitive deficits in FMS have been confirmed in various studies, not much is known about the mechanisms involved in their origin. This study aimed to investigate the contribution of affect-related variables to cognitive impairments in FMS. For this purpose, 67 female FMS patients and 32 healthy control subjects completed a battery of cognitive tests measuring processing speed, attention, visuospatial and verbal memory, cognitive flexibility and planning abilities. In addition, participants completed self-report questionnaires pertaining to positive and negative affect, alexithymia, pain catastrophizing and self-esteem. Clinical characteristics including pain severity, symptoms of depression and anxiety, insomnia and fatigue were also assessed. 


    FMS patients showed markedly poorer performance than healthy controls in all of the cognitive domains assessed, in addition to greater levels of depression, anxiety, negative affect, alexithymia and pain catastrophizing, and lower self-esteem and positive affect. In exploratory correlation analysis in the FMS sample, lower cognitive performance was associated with higher pain severity, depression, anxiety, negative affect, alexithymia and pain catastrophizing, as well as lower self-esteem and positive affect. However, in regression analyses, pain, self-esteem, alexithymia, and pain catastrophizing explained the largest portion of the variance in performance. 


    While interference effects of clinical pain in cognition have been previously described, the present findings suggest that affective factors also substantially contribute to the genesis of cognitive impairments. They support the notion that affective disturbances form a crucial aspect of FMS pathology, whereas strategies aiming to improve emotional regulation may be a beneficial element of psychological therapy in the management of FMS.

    ⬇️
    I created one of the campaign election video for Labour, and Jeremy Corbyn,
    This is a new version of Emeli Sande, Hope "You Are Not Alone
    I highlighted everything that's wrong with this country from benefits, NHS etc, but now we have to put up with the hate now. 

    You can see the video here.
    https://m.youtube.com/watch?v=P5o8hRHh9IY


  • madquasimodomadquasimodo Member Posts: 130 Courageous
    Have a read up on Cognitive ability and Vestibular problems, on the day its down to "does your face fit when you walk in" I had a lovely lady, put me at ease, went through all my problems and in my opinion marked me fairly, lower than I thought but fair, the missus got a smirk when she went in and sarcastic questions she sat in the car crying, knew she had lost the award.

  • cristobalcristobal Member Posts: 965 Disability Gamechanger

    ilovecats said:
    Hi,

    For the mobility part there's 2 activities, following and planning a journey and moving around. The conditions which you mention above won't score you any points for following and planning a journey because this is for mental health, cognitive and sensory impairments.

    If your conditions make it difficult for you to walk then it's the moving around part that you should have concentrated on because this is what you could score points in.

    Was it a PIP review or did you transfer from DLA?
    Poppy is correct. Fibromyalgia is a physical condition that generally will score in mobility due to the pain when walking. To score Enhanced and therefore a mobility car you have to only be able to walk 20m or less, which generally only those who are very disabled cannot do.

    Activity 11, even if someone score 11F they will not be entitled to a mobility car, due to the cognitive, sensory or mental health impairment that would prevent them from driving safely 
    Wrong. Fibromyalgia can also affect cognitive ability and is not purely a physical condition.
    As an ex health care professional I would have expected you to know this. Maybe this explains why so many of the assessors get it wrong.
    @djbantiques

    is it reasonable to expect assessors to know about every condition? There can't be many doctors who do are there?

    Surely if a claimant had claimed that fibromyalgia causes them overwhelming psychological distress (in relation to the moving around descriptor) then the assessor would check whether this were plausible/ supported by their GP/ medicated etc...

  • twonkertwonker Member - under moderation Posts: 617 Pioneering
    ilovecats said:
    cristobal said:

    ilovecats said:
    Hi,

    For the mobility part there's 2 activities, following and planning a journey and moving around. The conditions which you mention above won't score you any points for following and planning a journey because this is for mental health, cognitive and sensory impairments.

    If your conditions make it difficult for you to walk then it's the moving around part that you should have concentrated on because this is what you could score points in.

    Was it a PIP review or did you transfer from DLA?
    Poppy is correct. Fibromyalgia is a physical condition that generally will score in mobility due to the pain when walking. To score Enhanced and therefore a mobility car you have to only be able to walk 20m or less, which generally only those who are very disabled cannot do.

    Activity 11, even if someone score 11F they will not be entitled to a mobility car, due to the cognitive, sensory or mental health impairment that would prevent them from driving safely 
    Wrong. Fibromyalgia can also affect cognitive ability and is not purely a physical condition.
    As an ex health care professional I would have expected you to know this. Maybe this explains why so many of the assessors get it wrong.
    @djbantiques

    is it reasonable to expect assessors to know about every condition? There can't be many doctors who do are there?

    Surely if a claimant had claimed that fibromyalgia causes them overwhelming psychological distress (in relation to the moving around descriptor) then the assessor would check whether this were plausible/ supported by their GP/ medicated etc...


    So many people try to claim PIP for fibro because it’s  hard to prove/disprove. it’s insulting to the people who actually have it formally diagnosed and are trying all the different treatments to help themselves.
    One poster made a comment a while back about claiming along the lines of 'I don't care what society thinks go get claiming'
  • CockneyRebelCockneyRebel Member Posts: 5,258 Disability Gamechanger
    It seems to me that when a person has a name for a condition all of a sudden they are disabled, can't work and therefore they are entitled to benefits. Then they are suprised when they are found fit for work and no PIP. Of course this does not apply to most claimants with genuine needs. The internet is a great source of information, you can look up any kind of condition and the symptoms that they  cause. Is it any wonder that some people with a slight twinge or sniffle clog the system up ?
    Be all you can be, make  every day count. Namaste
  • madquasimodomadquasimodo Member Posts: 130 Courageous
    My doctor has told me "Do not use the internet" I did refuse Statins after trying them for some time and being racked in pain almost unable to walk, once I stopped it took a week or two and I felt better. its a double edged sword, as my blood pressure tablets specifically list back ache and to tell your doctor should you feel and pain, when checking and telling he told me I was weird as no one else had any problems with them. (nice man)
  • hunnybunny123hunnybunny123 Member Posts: 13 Connected
    I worked for 20 yrs, 14 yrs with special needs children. I'm not putting anything on, I was so upset to be retired , I know what you mean about people pretending to be disabled I have witnessed it first hand. It makes it Bad for people that are genuinely disabled.i hate that I can't do what I used to do i always wanted to be at my job until I retired. My hubby is 64, never claimed anything all his life. He works 50 hrs  week, at a very physical job. I won't be put in the dishonest group, we are to honest. That's probably why we don't get the help we need sometimes. 
  • madquasimodomadquasimodo Member Posts: 130 Courageous
    The dishonest usually sail through as they research the answers and know just what to say, just how to act and are just very good, most people just say what's wrong and fail to list all the facts thinking a proper exam will show all their problems, very rarely happens, the way people are now we all get tarred with the same brush, benefit scrounger, lazy.   
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Very few people claim PIP fraudulently. There's no right or wrong answers to put down on the forms, just like there's no correct wording that should be used.
    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.
  • madquasimodomadquasimodo Member Posts: 130 Courageous
    I think more people "try" and claim in case they win an award, I can only speak from experience, I know someone with a child who receives PIP and some other payment for special needs, her friend was miffed and tried to claim for her child, (not the same problem but some problems) there may have been some "you should say" but the result was she got PIP as well but not to the same level, 
    Before everyone shouts fraud there are some points both kids do have issues, one is not as bad, I do not nor have asked for anything personal/medical so each may well be totally genuine, anyone with a child that has special needs should claim if the problem requires extra help. but in my day neither one would have been anything special they would have been in my class, things are different now and help is there. BUT there was a lot of "collusion" no Russians though

    Without any further info I wouldn't take it further as I am not a nosey ****.  
  • Zebra88Zebra88 Member Posts: 55 Courageous
    edited April 2019
    I personally think fibromyalgia is a symptom and not the root cause of pain. Widespread pain can be debilitating though.

    I only found out I had previously been diagnosed with fibromyalgia/chronic widespread pain at 17yrs old when I attended an ESA assessment which was needed at 27 yrs due to time off sick for cancer related illness. The AP had my medical records and GP report which I had never asked to see before. My GP had written fibromyalgia, and at one point "hysteria" about my bladder bleeding 😑 (my bladder is due to be removed soon due to hemmorhagic cystitis and I dont see that doctor any more). I felt like the fibro diagnosis and subsequent prescription for cocodamol and SSRI's and "come back in 6 months" was just fobbing me off every time.

    I actually have hyper mobile with crossover vascular Ehlers danlos syndrome which wasnt diagnosed until a few years ago. Because I previously had been going to the GP telling them my knees were bending backwards and my ribs hurt all the time they just assumed it was fibromyalgia without doing any tests. When I had genetic testing and cardiorespirary investigations etc I was found to have a genetic illness.

    I wrote to my doctor to take the fibro diagnosis off my records because I do not have fibromyalgia and I dont like the negative connotations that come with the diagnosis. I use a wheelchair due to dislocations and I dont want people to think it's because of muscular pain because I dealt with muscular pain for almost 30 years without relying on my chair. That's just my opinion and I'm not saying it isn't a real illness, I just don't like how it's seemingly diagnosed with no tests when someone could got a lot more help with their health if proper investigations were done in all cases.

    In my area there is no treatment for EDS or diseases of connective tissue. Instead you are sent on "fibromyalgia awareness sessions" to talk about your widespread pain. I felt like a fraud as everyone who turned up had fibromyalgia and I had to sit there, already knowing what was causing my pain and inflammation, while the therapist told everyone in the room that the literal meaning of fibromyalgia is "pain of an unknown cause" and that I could be in pain because I'm depressed. No, I'm in pain and depressed because my joints don't stay in place and my organs don't work properly.
    Myalgia = pain, fibro = muscles. Fir myself; that isn't a diagnosis it's a symptom of something else.




  • Zebra88Zebra88 Member Posts: 55 Courageous
    edited April 2019
    ilovecats said:


    I have a relative that has finally been diagnosed with EDS after years of refusing to accept a Fibromyalgia diagnosis. EDS sucks.

    I personally think fibromyalgia is given out too freely as a diagnosis without the root cause of pain being investigated. I agree that Fibromyalgia is a symptom and a large number of medical community believe (myself induced) that the pain is real but the cause is psychological. Too many people readily accept the diagnosis and resign themselves to becoming 'disabled' by the condition.
    It's not uncommon for EDS to be misdiagnosed at first as I'm sure you probably know. It's great that your relative finally has answers and hopefully correct treatment.

    I think more tests should be done. I was under the impression that fibro was the diagnosis after all other causes were ruled out but nowadays it seems doctors just use it as a catch all diagnosis.

    My partner was  also diagnosed with fibro/CWP and actually had a grade 3 spondylolisthesis and foraminal narrowing, and had emergency surgery to fit a brace around his spine after losing feeling in his legs. For 4yrs before that he had convinced himself he would always be in pain which has now left him with mental ill health as he pieces his life back together.

    I do not wish to discredit others personal exoeriences but from my personal experience whenever someone says they have pain they say it's fibromyalgia..  and that isn't their fault, it's lack of medical care.
  • djbantiquesdjbantiques Member Posts: 43 Connected
    ilovecats said:
    ilovecats said:
    Hi,

    For the mobility part there's 2 activities, following and planning a journey and moving around. The conditions which you mention above won't score you any points for following and planning a journey because this is for mental health, cognitive and sensory impairments.

    If your conditions make it difficult for you to walk then it's the moving around part that you should have concentrated on because this is what you could score points in.

    Was it a PIP review or did you transfer from DLA?
    Poppy is correct. Fibromyalgia is a physical condition that generally will score in mobility due to the pain when walking. To score Enhanced and therefore a mobility car you have to only be able to walk 20m or less, which generally only those who are very disabled cannot do.

    Activity 11, even if someone score 11F they will not be entitled to a mobility car, due to the cognitive, sensory or mental health impairment that would prevent them from driving safely 
    Wrong. Fibromyalgia can also affect cognitive ability and is not purely a physical condition.
    As an ex health care professional I would have expected you to know this. Maybe this explains why so many of the assessors get it wrong.
    Not wrong. It’s a physical condition. There are symptoms such as brain fog that are attributed to it, but again, doesn’t mean you are cognitively impaired in terms of PIP. No one knows enough about it and many heath professionals don’t even believe it is a really disease. I am not one of them. 

    Lets not not start assuming what I do and don’t know.

    Many symptoms are attributed to it because it has such a loosely defined scope of symptoms.
    Proves my point regarding assessors.
    Even when they are wrong they are right.
  • Government_needs_reformGovernment_needs_reform Member Posts: 851 Pioneering
    Here, here, I couldn't agree more and second that @poppy123456 👍 with the help @ilovecats has given people more hope and help on here.

    I know @ilovecats have given me sound advice with what we discussed a while ago. I thank you for that❤️ 

    My advice to anyone is if you don't like the advice, don't reply or even acknowledge it. End off.
    ⬇️
    I created one of the campaign election video for Labour, and Jeremy Corbyn,
    This is a new version of Emeli Sande, Hope "You Are Not Alone
    I highlighted everything that's wrong with this country from benefits, NHS etc, but now we have to put up with the hate now. 

    You can see the video here.
    https://m.youtube.com/watch?v=P5o8hRHh9IY


  • cristobalcristobal Member Posts: 965 Disability Gamechanger
    Further vote for @ilovecats advice ....gives a valuable insight into the mind of an assessor (!)

    Obviously, as @Government_needs_reform say, advice is just that - if you don't like it then ignore it and do something else, perhaps with a polite 'thank you' for the time and trouble that someone has taken to help you out...

  • djbantiquesdjbantiques Member Posts: 43 Connected
    Proves my point regarding assessors.
    Even when they are wrong they are right.
    I disagree, sorry. @ilovecats is no longer an assessor. He/she spends their valuable time here on the scope forum giving extremely good advice to other members of the forum. I've said this before and i'll happily say it again, i for one am very grateful for all their help here. My knowledge was fairly good before he/she joined us but now it's even better.

    Thank you @ilovecats for all the help and support you give to others here. It's very much appreciated!!
    As you have said many times the decision makers usually go with the assessors report, so even when they are wrong they are still right.
    That is until the appeal stage and then suddenly when the facts are looked at by 3 independent unbiased experts the assessors report is found to be unfit for purpose.
    As I've said before things are not always what they seem !!
    I have  5 years as a RGN, 32 years as a RMN, 8 years as a DLA assessor, 6 years as a PIP assessor and now 7 years as a benefits advisor and in that time have seen and heard things that would make people gasp.

    For anyone looking for advice please try and get face to face help. Forums like this are great for support but advice really needs to be on a one to one basis.
    @ilovecats my posts aren't a personal attack, but purely to highlight a deeply flawed system, my apologies if they seem that way. I've been in your shoes and am glad i am out.
    If the moderators could now delete my membership.
  • twonkertwonker Member - under moderation Posts: 617 Pioneering



    I have  5 years as a RGN, 32 years as a RMN, 8 years as a DLA assessor, 6 years as a PIP assessor and now 7 years as a benefits advisor and in that time have seen and heard things that would make people gasp.
    Wow! I presume that you started work at age 16 and with 5 years RGN, 32 years RMN, 8 years DWP (DLA), that would make you 61. Then another 6 years DWP (PIP) finishing off with 7 years as a Benefit Advisor.
    So at 74 you are still going strong - good for you.
    What I can't understand is how you have managed to be an assessor for PIP for 6 years and then spent another 7 years doing something different. PIP didn't come on line until 2013 - 6 years ago so how have you managed to also put in a further 7 years as a benefit advisor ?? Moonlighting on government time ??  
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