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Very concerned

Topkitten

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

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Comments

CPwarrior40

Well done (in a positive non patronising way)
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,

Topkitten

@CPwarrior40, actually I don't think it is good. I don't seem to feel anything.I don't find things happy or sad or anything else for that matter. Not sure this will have a good outcome.

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

CPwarrior40

wow, any chance of a change of surgery
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

Gaina

Topkitten said:

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

((HUG)) I know how you feel TK I was beside myself with anxiety the closer I got to the f2f as well. In the end the assessor turned out to be very good, and made me feel at ease when I explained what I have difficulty with. I hope that reassures you.

When I filled in the part about preparing food, I had the same confusion as you.

To Question 3a 'Do you need to use and aid or appliance to prepare a meal?' I answered NO, but wrote 'SEE Q3C' next to the box (3c is where you can write further details).

To Question 3b 'Do you need help from another person to prepare or cook a simple meal?' I ticked YES, and again wrote 'SEE QUESTION 3c'.

In 3c I explained that someone else prepares all my meals for me as I am unable to handle hot and heavy items safely and reliably due to my disability.

I hope that helps.

debbiedo49

At my f2f assessment I was asked did I use lightweight pots or adapted utensils for cooking? In response to the above about heavy pots etc. I said no as I didn’t feel safe in the kitchen cooking. I didn’t get enough points for that. They may ask you same question in different ways.

Gaina

debbiedo49 said:

At my f2f assessment I was asked did I use lightweight pots or adapted utensils for cooking? In response to the above about heavy pots etc. I said no as I didn’t feel safe in the kitchen cooking. I didn’t get enough points for that. They may ask you same question in different ways.

I was just asked if I could chop vegetables. I said I couldn't because our kitchen counters are too high for me to work at. Fortunately my assesment took place at a GP surgery and there was a cabinet in the room the same height as our kitchen counters so it was easy to give her a visual example.

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!

Gaina

debbiedo49 said:

At my f2f assessment I was asked did I use lightweight pots or adapted utensils for cooking? In response to the above about heavy pots etc. I said no as I didn’t feel safe in the kitchen cooking. I didn’t get enough points for that. They may ask you same question in different ways.

I was just asked if I was able to chop vegetables. I said I wasn't because our kitchen isn't adapted. Fortunately the assessment took place at a GP's surgery and there was a cabinet in the room the same height as our kitchen counter so I was able to demonstrate why it was impossible.

At the end of the assessment she even said she couldn't understand why people like me with conditions that will not improve were even being called in for assesment!

Yadnad

Gaina said:
.

At the end of the assessment she even said she couldn't understand why people like me with conditions that will not improve were even being called in for assesment!

The central policy for PIP is regular re-assessments.
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.

Gaina

Yadnad said:

Gaina said:
.

At the end of the assessment she even said she couldn't understand why people like me with conditions that will not improve were even being called in for assesment!

The central policy for PIP is regular re-assessments.
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.

poppy123456

Yadnad said:

In the meantime 3/5 year awards irrespective will still continue to be given.

Some people are unfortunate to have even less of an award than that with 2 years and review after just 1 year.

Gaina

Username_removed said:

Hopefully the advice to write stuff down as though every day is your worst day has been disregarded. Must say I read the OP post and thought it had been over complicated. It’s really simple in the sense that if you can do so,etching but can’t do it reliably, safely, repeatedly or in a reasonable time... then you can’t do it.

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.

Waylay

@Gaina @Username_removed is correct. Multiple descriptors can count, so long as they add up to 50%

poppy123456

You can't score points for more than 1 descriptor, so i'm confused by this.

Gaina

Waylay said:

@Gaina @Username_removed is correct. Multiple descriptors can count, so long as they add up to 50%

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. ?

susan48

poppy123456 said:

You can't score points for more than 1 descriptor, so i'm confused by this.

I thought that too

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