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Very concerned

Topkitten
Topkitten Member Posts: 1,285 Pioneering
I am getting more and more paranoid about PIP and it's only been a week since I started the process.

I did the PIP calculator but found the options confusing, often trying to decide which of the 2 or 3 valid options I should choose. It seems complicated and difficult to get right for me. An example of this would be preparing a meal. I cannot prepare anything as such but I can use both a cooker and a microwave. The problem I currently have is that if I do those options I will suffer badly for a few hours. In part this is due to the disability but a lot is down to the fact that I am horrendously under medicated and suffer both pain and withdrawal effects but the effects are always some time after the actual deed. I also have to overcome the fear of the suffering doing so will bring. There are a number of other questions that are similar, such as route planning where I can only go somewhere I am comfortable with or have been to a number of times before. However, I can get there but would suffer a panic attack before entering and then go home unless someone is with me. However, I live alone, have no friends and my children I hardly ever see and get no help from at all. Medication wise I should be better and may be in the future if appropriately medicated but the GP's won't do it they want the hospital to and the hospital always says it's for the GP's to sort out. I am also recently house bound for lack of medication reasons but cannot get the GP surgery to agree that I cannot go out.

I ran the calculator and got 31 points for the first section and 20 for mobility but, depending on the answers the first could change by as much as 20 and the mobility by 10.

This changeover from DLA to PIP couldn't have happened at a worse time. I am terrified it will go wrong. Should I answer questions as I am now or as I should be and might be in a few months? If I do it as I am now, what if I cannot get the GP surgery to back me up? I have already made some inquiries about other things and any letter from the GP is going to cost me and needs 3 weeks advance notice. As far as going out is concerned I tried it Friday and went out, drove a few miles, walked about 20 metres and used a mobility scooter (to get about and give me confidence) for a short distance. In total I was out dor an hour and a half and had to overcome a panic attack when I got where I wanted to go. For doing this I collapsed into sleep for 2 hours about an hour after I got back, suffered so much pain I had an ambulance called out for me by the 111 service and suffered for 12 hours before it subsided and then suffered withdrawal for another 24 hours (sleeping for most of that time but waking with nightmares every hour or two). Admittedly, if the medication was better, a lot of the suffering would not happen but it could be months (if ever) before the meds are sorted and I will be in this position again next year but for reasons of progressive disability rather than lack of medication.

How am I supposed to get through this.

I am diagnosed with multiple (7 or 8) Collapsing Discs in the lower spine, a Ruptured Disc in the cervical spine, Chronic Pain in the lower body from the former and neck, shoulders and arms from the latter. My BP is high but marginally below the level requiring medication (though it hasn't been checked recently) and I have circulation issues below both knees (again no medication required but I cannot put on or take off the aids they supplied). I used to be on medication for high BP but since I was in a coma it has settles a little lower than it used to be. I also seem to have some sort of problem with my toes (probably circulation related) but not actually diagnosed. I have Severe Depression, Agoraphobia, Anxiety and Panic Attacks. I am also Paranoid but not actually diagnosed as MH wont take my case on and won't do an assessment. Because of the arguments I am facing regarding home treatment I cannot get some of this stuff either sorted and / or diagnosed as no one in the NHS will visit me unless it's an emergency.

I hope someone has some idea of how I am supposed to go about this as the guy from DWP is coming tomorrow and that's when the form needs to be filled in.

TK
"I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
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Comments

  • wilko
    wilko Member Posts: 2,457 Disability Gamechanger
    As a regular poster you will have read many stories like yours, firstly I would fill in the form as every day is your worst days. The acessor will and should not ask you to do thing that will cause you pain or distress or aggravate your condition. Remember that what you put in the applecation form has to be justified at your face to face acessment. Prayers to you  Topkitten.
  • poppy123456
    poppy123456 Member Posts: 31,237 Disability Gamechanger
    Hi,

    PIP isn't awarded based on a diagnosis, it's how those conditions affect you daily. It's also not just about the help you get, it's about the help you need, whether you get it or not. Also the reliability factor, this means if you can't do something regular, reliably, without pain and discomfort then you're classed as not being able to do it at all.

    The form needs to be filled in based on how you are now, not what you'll be like in the future.

    Here's a guide to filling in the form which may give you a little more understanding with those descriptors.

  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    Ty @wilko. The f2f is what worries me as there is no way I will put myself through the suffering by going to them but without the GP support won't be allowed a home f2f.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    Ty @poppy123456, I will have a look through those but don't feel up ro it right at this moment. Having slept a lot over the weekend I have been awake all night and now feel horrible but not tired yet. I appreciate the reply though just starting to panic about getting the surgery to support me. The calls I need to make and arguments it will lead to.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • poppy123456
    poppy123456 Member Posts: 31,237 Disability Gamechanger
    wilko said:
    As a regular poster you will have read many stories like yours, firstly I would fill in the form as every day is your worst days. The acessor will and should not ask you to do thing that will cause you pain or distress or aggravate your condition. Remember that what you put in the applecation form has to be justified at your face to face acessment. Prayers to you  Topkitten.
    No! filling out the form like everyday is your worst day is the worst thing you can do!

    PIP is all about how you are 50% of the time! It's about your good days, and bad days. If you filled that form in as if it's your worst day and you attend the assessment and it's one of your better days. The HCP will most likely see through this and think something like " well this person can't be as bad as they're making out, they seemed ok today" Never ever fill the form in, or go to any assessment and tell them it's your worst day, if it's not.

    Be honest! and tell them exactly how your conditions affect you.
  • poppy123456
    poppy123456 Member Posts: 31,237 Disability Gamechanger
    When filling out that form, you can ask for a home assessment. They will most likely need a letter from your GP stating the reasons why it's needed, if your evidence isn't enough to prove this.

    For my daughters PIP application i requested a home assessment, i didn't send a letter from her GP but the evidence i sent was huge (over 40 pages) proving those descriptors applied. No GP letter was needed and a home assessment was granted, without any problems. She suffers with mental health and no physical health at all. She was awarded Enhanced for both, first time application and no previous DLA award.

    Remember, we only ever read the bad stories and very rarely the good ones. Yes, it's scary for everyone. We wouldn't be human if we weren't scared about these assessments. Be honest and tell them exactly how you're affected. Back it up with relevant evidence, letter from your GP/Consultant, Social worker, Occupational therapist reports etc. Ask your GP if you can have copies of your medical records (there maybe a charge for this) write a diary on how your condition affects you. Recent list of all current medication.

    Try not to read too many stories on the internet, it will make you feel even worse. Good luck!
  • [Deleted User]
    [Deleted User] Posts: 142 Listener
    Hi, I am currently going through the Pip process from DLA and when making the initial phone call I was very scared and tearful, but the lovely man told me to breathe, calm down and don’t listen to the horror stories you read on the internet, so .... hold on to that advice! We are all in the position, I’ve gained some wonderful advice on here and that always makes me feel a little bit better! :) xx
  • auntySue
    auntySue Member Posts: 3 Listener
    I had to do my move to PiP last year and feel what you arr going thru. These following points are what I tried to keep in mind all the way thru. * it is about how I am feeling in the present, not what nigh happen next month. * I must fill in every question as if I am having my worst day. * The pain is mine and the fear and panic is mine, no one else can tell me what MY pain, fear or panic is like. * Should things change in the future and I feel better or worse I can let them know, this is what they expect everyone to do. *It is about the help I need, even if I don't get that help. These five points helped me to get thru this awful form. I hope they help you too. Good luck, I hope you get a great result. I also hope you get somewhere with your GP and the hospital who at present are so caught up in their disagreement with each other that they seem to have forgotten about you, the patient ?
  • Yadnad
    Yadnad Posts: 2,856 Connected
    auntySue said:
    I must fill in every question as if I am having my worst day. 
    As Poppy and others have said - this is wrong! If you do that then what you are saying is that your worst day is every day.
    Claimants in the past when telling the DWP that have been prosecuted for benefit fraud.
  • poppy123456
    poppy123456 Member Posts: 31,237 Disability Gamechanger
    auntySue said:
     * I must fill in every question as if I am having my worst day. *
    No, this is not what you should do! You should fill out the forms exactly how your conditions affect you. If everyday isn't your worst days why on earth would you even consider writing that on the forms??? My mind boggles when i see people advising others to do this.
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    Not a good day. Yesterday was Father's day and I spent it alone with just 2 texts from my 3 grown up children. Felt very low but had to try to sort out ordering food. Used the Tesco site and it took ages as my hands shake so using a touchpad is difficult. With all my current issues I have had to buy a really cheap light laptop as my usual is too heavy for me now. Started the order at about 10pm and took an hour to sort out the items. Couldn't finish though because the card verification just gave me a broken link. Tried many times, tried waiting, contacted Tesco and there is no fix. I can't even use an alternative device, that's why I bought this one ffs! Also tried calling the GP surgery to start the argument process to be put on the home visit list. I was on hold for 20 minutes, started as call 3 and ended up still call 3.

    My real worries about PIP is that the condition I have doesn't exist. It has no treatment or cure and not even a name. I must have seen 25 different doctors in the last 3 years and all but 1 looked at the description and misdiagnosed me as crumbling spine which causes pain at considerably lower levels than I suffer, so the next thing I have to do is interrupt their spiel about being on too much medication and try to explain. Only 50% listen and so far only 1 has even attempted to try to really understand. I did have one senior doctor who stated 6 times during my explanation that I "didn't know what I was talking about" and then treated me for crumbling spine. I tried 6 or 7 times to get him to understand but he doggedly refused to admit his error. I complained to the Practice Manager which made things worse and then doctor after doctor started refusing to treat me even though one told me that the doctor who made the mistake refused to talk to me ever again. After a few weeks getting more and more frustrated and angry on the phone I was suddenly de-registered. With my problems at the rime and with no carers to help I had no GP for almost 3 months. Fortunately I was only on Tramadol at the time and managed to stretch it out.

    With all the problems I have had in the past the fear is gaining ground. With everything else going wrong and with my children apparent uncaring about me I am fast going into deep suicidal feelings again and I don't see a way out at the moment.

    Every time I wake up I have to force myself to choose between three options....

    1) Get up, take medication, start dealing with the pain caused by movement.
    2) Don't get up or move about, just lie in bed for a few days and the pain will completely stop. Just have to ignore completely hunger and thirst.
    3) Get up, grab every tablet I have and take every single one of them.

    For 5 years I have always managed to select option 1 although some times I have grabbed tablets late in the day when the pain is at it's worst. I don't know how today will finish......

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    Sorry I forgot. Currently I am only under the GP. I have never been seen by Occupational Therapy as the pain is neural and exercise would only make things worse. I have been under specialists at times, the last one was Orthopaedics, who discharged me a few days before xmas. A letter from the GP would have to be paid for and won't be done for 3 weeks. I see the guy to fill the forms in tomorrow. I have no suppporting documentation as it's all in my file at the GP surgery, said file is almost 3 inches thick so no doctor ever reads any of it.

    So it will all be based on what I can put into the forms. I seem to remember that the assessors don't often contact the GP for information. Even if they do the most informed doctor doesn't really understand things and any other doctor simply passes on my comments to him. He is the one who won't give me enough medication so that I might still be able to walk because he has to "follow the guidelines".

    I think I am doomed........

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • auntySue
    auntySue Member Posts: 3 Listener
    In reply to comments on my post. I have.done just what i said on.my form. There is a section where you can make comments. This is where I put what I have done. I then explain how many times I get a better day. Usually about once or twice a week if I can hide away and do very little. I am very honest on my forms. As a result I got my award without being interviewed. They wrote to my GP and were happy that what I described was true. Maybe you only get occasional bad days. I am sorry, I was speaking as I everyone is the same as me which they obviously are not. Most of the forms are common. sense to fill in anyway. The new PiP form is far easier than any of the DLA forms I have filled in previously. I'm afraid that trying to work out what is an average day is a pretty impossible task for a lot of people. I certainly cant do it. If I put I cant walk any distance without pain and the pain will stop me within 20m I would likely out in the comments box that on my couple of good days that I can get in a week I may actually walk 10m before being in pain but wouldn't not make it to 25m before having to stop and rest due to the pain and change of sensation in my legs. Hope this clarifies my answer although I do accept it would not be a suitable method for some one who only has one or two bad days a week.
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    The guy came today and helped me fill in the forms. He was very helpful and made what I read as complicated seem fairly simple. He also prompted me to add things back into previous parts when he realised I had left them out. I am still worried about what information the GP might or might not reply to any enquiry that could be made because I have no confidence that any GP in the surgery really understands my problems. Still first hurdle cleared, bow I have to wait.

    One of my main concerns is that if I lose the benefit then I not only lose the car but also my income would drop below a certain figure and I would also lose my bank card. Then I would be in real trouble as I couldn't order food or anything else online.

    Ty for the replies, it helps to know others have issues too.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • CPwarrior40
    CPwarrior40 Member Posts: 8 Connected
    they tend to base the scoring on a persons ability the MAJORITY of the time and if you can carry out the task SAFELY, 
    emotional needs and limitations can be mentioned 
    they will determine if you have a cognitive impairment from the paper evidence you provide from GP, PHYSIO, Hospital consultant letters etc
    a list of prescribed medication is useful
    you need to allow 1 month for GP to dictate letter and pay £24 (cornwall)
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    @CPwarrior40, I know GP's just love referring people to Physio but unfortunately, for most disabled conditions, it can often be counter productive. Specialists only tend to keep people on their list for relatively short periods and even the Pain Clinics have a limit of 5 years support. Generally a lot of disabled will have to rely on GP reports only and, unless it is a well known condition, do not have much time to provide details and treat so many patients so that unless a condition is particularly memorable they will have forgotten it. Consequently, how can a 1 page GP letter contain sufficient details from a file inches thick, as they tend to be after you have suffered for a long time. This point is especially relevant now that compulsory re-applications are now necessary.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Yadnad
    Yadnad Posts: 2,856 Connected
    edited June 2018
    Topkitten said:

    One of my main concerns is that if I lose the benefit then I not only lose the car but also my income would drop below a certain figure and I would also lose my bank card. 
    Been there too. Since 2013 I have had to return 3 Motability cars. On top of that if you include the money for the car, I have had a drop of just under £200 a week including the Pension Credit as well.

    On top of that I have lost the 100% reduction in the Council Tax. (which reminds me I need to contact them to see if I can get anything off what I am now supposed to pay since last March.
  • CPwarrior40
    CPwarrior40 Member Posts: 8 Connected
    TK sorry I couldn't be any more help to you, I'm also waiting to hear about my PIP.
    I have had Cerebral Palsy since birth now 40+ it suited me to have an assessment face to face In 2015, when its all you have ever known. 
  • Waylay
    Waylay Member Posts: 971 Pioneering
    @Topkitten, can you get a copy of your records? There might be useful letters, reports, etc. in there that you can use as evidence. 

    In my experience, GPs can only list diagnoses, treatments, and meds in a letter. They don't tend to know much about whether you can cook a meal, etc. With your mobility problems, tho, your GP might be able to support you on the mobility questions. 

    I'd ask your GP to explain the GP-hospital medication situation. Assessors sometimes look at your meds and assume that if you're only taking <foo> amount, your pain can't possibly be as bad as you say. 

    Do you know whether your GP actually knows how to write a useful letter? You could give them.a copy of the activities with the descriptors (I'd blot out the numbers, though), explain the importance of describing how your function is affected, not just what's wrong with you, and provide them with a few questions for each activity. For example, for making a meal, ask: "Can patient stand or sit for long enough to make a meal? Chop vegetables and cut up raw meat? Cook a meal using the cooker? Cook a meal using the microwave? Serve the meal onto plates? If they did manage to make a full meal, would they end up so fatigued, out of breath, or in pain that they wouldn't be able to do it again later, or would have to lie down, etc.? Can they do these things reliably (safely, etc. - look it up), and on at least 50% of days? If they can't cook a meal themselves, could they do it with prompting, assistance, or supervision (define what these mean)? Do they use aids or appliances, or would it be reasonable to expect them to do so? Do their conditions cause variation in their function?"

    Good luck!
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    The forms are done and in. Everything including cooking, washing and even taking medication was put in as could do only at the simplest level (like heating prepared meals) and even then only done when I was prepared to put up with the suffering it caused so was done infrequently to never. The point was also made that although I could go places in the past there were restrictions regarding strangers and strange places but at this moment in time I could not go out at all. The guy who helped me was really good and kept going back to the conditions, updating them with things I had forgotten. I've had a text acknowledging the receipt of the application. I'm hoping things will go ok but, tbh, the lack of being able to go out has hit me hard and I really don't care about anything any more.

    The fear has gone, interest in anything is also gone. Don't think I have ever felt so much lack of feeling ever before. I feel absolutely nothing at all now.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.

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