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Very concerned
Topkitten
Member Posts: 1,263 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 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.
Replies
TK
TK
Claimants in the past when telling the DWP that have been prosecuted for benefit fraud.
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
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
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
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)
TK
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.
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.
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!
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
But Can I please ask that you contact your GP and ask for a ring back
you may want to ask to "up" your meds so that you can at least go out
best wishes,
As for the meds.... I have argued sensibly and logically, got angry and gone into panic attacks trying to get my regular doctor to up the meds since December and he has steadfastly refused. I had a home visit and a phone call with two other doctors, both appeared to agree to it and then did nothing. I have talked to reception people and the prescription team and got nowhere except more panic attacks. I even complained to NHS England about it and got nowhere. I can't think of anything else to try. My regular doctor wanted the Pain Clinic to up it and referred me. However, they won't treat me unless I attend a seminar first and currently the pain has me officially "Housebound", so the Pain Clinic discharged me. I guess I just have to live with ever increasing pain now that the doctor has to shoulder the burden alone. Who cares anyway, certainly not my GP or Surgery, that's for sure.
And now it seems I have a new problem. The neural pain in my right leg is due to damaged nerves (been damaged for 12 years and are now permanently damaged, nerves don't regenerate or heal) and Tramadol doesn't touch it significantly, also I have had almost no feeling in my right toes for 2 years. Now, for the second time, the pain in the shin has gone from it's usual red hot burning sensation to white hot. My right foot usually only hurts when I wear socks and / or shoes but now that is white hot too and my right toes hurt as well. Oddly though the pain IS responding to Tramadol, so it isn't neural pain. Last time I contacted the 111 service and they insisted on sending an ambulance who, as usual, could not help. I wouldn't go to A&E because by the time they arrived (8 hours after I called) the pain had subsided and also because hospital transport is reserved for cancer patients only. I can't use taxi's due to agoraphobia and I have no other way to get home. The ambulance crew insisted on ringing a doctor who wanted to speak to me then she did everything she could to wriggle out of attending and ignored me when I said it was a new problem. She didn't attend and the ambulance crew were more than a little stunned when she refused. So.... I am now at the daily limit for Tramadol in in only 8 hours and will likely have to take more every 2 hours until it subsides.
The most likely problem with the leg is circulation issues or a clot but I don't seem to care about that either. Feels so weird not caring about anything.
TK
sounds like my anxiety (possibly OCD) at times and my pain management of Cerebral Palsy is different to you and your situation
good luck! & best wishes
She actually said at the end of the assesment that she didn't understand why people in my position - who's condition will never improve - are even being hauled in for assesment!
However there does seem to be some movement in this with the DWP agreeing that some people with lifelong conditions that will never change will be re-assessed every 10 years.The devil will be in the detail as to which conditions it will apply to.
In the meantime 3/5 year awards irrespective will still continue to be given.
I don't propose to list all of my ailments suffice it to say that the majority of people would say that they are all lifelong and life limiting. Since 2013 I have had two three year awards which were reviewed after 2 years.
Given that I don't believe for one minute that the DWP will go against the above policy to a larger degree and consequently at age 70 I gave up after re-assessment number 3. Too much stress involved in having to fight every DWP decision.
I'm convinced the swines make the whole process as convoluted as possible to deter people launching appeals to decisions in particular.
One other point falls out of this which the OP post highlights. More than one activity under a descriptor can apply. So, if you can’t reliably do daily living 1b but only 30% of the time and yet 1e applies 25% of the time you can add them up so they go over 50%.
That's interesting, i was under the impression that only ONE descriptor in any section could apply.
I must have had an outdated version of the notes for assesors. They change the criteria so fast! I'm sure it's to make sure we can't get our heads round it. 😜
Don’t see many advisers pursuing this but equally it rarely gets put in front of DWP because of course the software used by the assessment provider only allows for them to select one descriptor.