Ouch Too - a place for and about disabled people.

Forum => Welfare Rights => Topic started by: Jockice on 30 Jun 2019 07:24AM

Title: They've got me at last...
Post by: Jockice on 30 Jun 2019 07:24AM
Morning everyone. Remember me? Sorry I haven't been around for a while. But real life has been getting in the way. And talking of real life, a couple of days ago I got THAT letter, the one from the DWP saying my indefinite DLA is coming to an end blah blah blah and I have the great opportunity to apply for PIP etc.

I think I'm pretty well read-up on the whole process but my nerves are still going to be wracked to bits. Anyway, I'm now practically a full-time wheelchair user (I've had a ramp set up outside my flat and all that) so surely they can't turn me down for the mobility bit now. Or can they? I really dread to think.

There's not a lot anyone can do at the moment (I have until July 17th to phone them up, which given the state of my speech nowadays will be great fun) but of course any advice will be gratefully received.

Hope everyone's as well as possible. It's good to be back.
Title: Re: They've got me at last...
Post by: SashaQ on 30 Jun 2019 10:36AM
Morning!  Good to see you over here  >biggrin<

Good luck with it all - I found the form is challenging to fill in as the questions are strange (sort of 'one size fits nobody'), but the assessors managed to get what they needed from it.

I'm sure the evidence you have about your wheelchair etc will be useful to the assessors, too so I hope you get the best possible outcome as well  >x-fingers<
Title: Re: They've got me at last...
Post by: Jockice on 30 Jun 2019 11:11AM
Morning Sasha. Yes, I'm looking at copies of the question form at this very moment. Bit strange, but I think they're trying to trip us up. Which in my case would be very easy, physically at least.
Title: Re: They've got me at last...
Post by: KizzyKazaer on 30 Jun 2019 05:54PM
Greetings, Jockice, we all know the 'real life getting in the way' syndrome...

I had an indefinite DLA award as well so this PIP malarkey feels a little like a stitch-up with a mere 3 years before my next reassessment (and those 3 years are almost up now *sigh*) But I did get the enhanced care component, so could have been worse...

Not an expert on the mobility side, but it sounds like you'll be OK on that  >thumbsup<  I suppose you'll have deduced this for yourself already, but do obtain some medical evidence to show that your wheelchair use is not only full-time, but unlikely to change in the future (if that's the case).  Then you might be fortunate enough to get the more generous 10-year entitlement before a so-called 'light touch' review (as far as I'm aware, PIP just doesn't get given for life!)
Title: Re: They've got me at last...
Post by: Monic1511 on 30 Jun 2019 07:21PM
I’m not at home just now but will put up some stuff mid week  >dove<
Title: Re: They've got me at last...
Post by: ally on 30 Jun 2019 08:32PM
I have no idea how old you are. However, if you’re nearing 65, or, will be when your next fixed award ends, you may be legible for an ongoing award, with a light touch at the end of the 10 year period.  At the moment this is for those who are having a review of their pip award.  However, it’s expected to be rolled out for everyone in the future.
Title: Re: They've got me at last...
Post by: Jockice on 01 Jul 2019 10:49AM
Hi Kizzy, thanks Monic and I'm 53 Ally. In a bit of a rush at the moment (as much as I can possibly rush anyway) but I'll be back to have a proper chat with you all later. It's good to be back.
Title: Re: They've got me at last...
Post by: Sunny Clouds on 02 Jul 2019 11:24AM
Jockice - I hope this will come across right.

I believe that from what you say that you should get it and stand a good chance of getting it.

However, if they can find a loophole, they'll try it on.  In my case I sent over 80 pages of info and a mountain of evidence, but they still found loopholes so I had to apply for a mandatory reconsideration etc.

So here's my recommendation...

Prepare your case to a standard sufficient to get it on first try, but psychologically work on the basis that you'll probably have to apply for a reconsideration and that going to appeal is not wildly improbable.

Thus if all goes well and you get it straight off, great, and if not, you're psyched up to keep fighting.

Please, please don't do what I did and let it hit you nastily if they try to turn you down in a way that's in some way nonsensical or obviously unfair.  They have targets.  Prepare for the worst, aim for the best, and I believe you can 'beat the system' to get what you are properly entitled to.

Title: Re: They've got me at last...
Post by: Monic1511 on 02 Jul 2019 08:12PM
When you are answering the questions your better looking at the question and then the points that could be awarded for that question.  The you word your written answer aiming for a specific point.

By that I mean the first question (I think not looking at a form) is "Can you prepare a meal for one from fresh ingredients.  Answer Yes or No.    The first thing the DWP consider is the 50% rule, if your condition only affects you 3 days a week thats less than half the week so can reasonable be ignored.  Epilepsy patients often get a response that says "claimant does not have seizures most days, therefore could reasonable be expected to X"

For the food prep the points are:
1. Preparing food
a. Can prepare and cook a simple meal unaided. 0
b. Needs to use an aid or appliance to be able to either prepare or cook a simple meal. 2
c. Cannot cook a simple meal using a conventional cooker but is able to do so using a microwave. 2
d. Needs prompting to be able to either prepare or cook a simple meal. 2
e. Needs supervision or assistance to either prepare or cook a simple meal. 4
f. Cannot prepare and cook food. 8

If you have co ordination problems or problems gripping cutlery or knives, pots etc you are likely to be awarded 2 points, getting 4 is difficult
To get 4 points you need to show why you need supervision, that you cant make beans on toast, making the beans in a microwave.  Thats the level of "cooking" and one client was asked at tribunal "you are telling the panel you can drive a car but cant make beans on toast"  - we came out with 2 points for that because they needed a perching stool and could not safely use a cooker.

Thats the way I do the forms and its easier to argue at tribunal stage if your aiming for points.
The descriptors are here https://www.citizensadvice.org.uk/Global/Migrated_Documents/adviceguide/pip-9-table-of-activities-descriptors-and-points.pdf

sorry Im a bit exhausted after 8 hours of travel, will try to add more or give me specific questions  >bighugs<
Title: Re: They've got me at last...
Post by: Jockice on 05 Jul 2019 03:20PM
Thank you very much Monic. I've been looking it all up and I don't think they can turn me down for the mobility componenent (there's absolutely no way I can safely walk 20 metres) but it wouldn't surprise me if they tried. As for the rest, it's pot luck. I could get 14 points or I could get none depending on how it goes.

I'm not overly worried yet (I don't have to phone the DWP up for over a week and I'm leaving it as late as possible)

There seems to be a spate of people locally getting tested at the moment. Our time has come. I do voluntary stuff for a local disability organisation and at least three of the others have been through it recently. One got put through without assessment (he's got muscular dystrophy and uses a power wheelchair), but another (who has slight mobility problems and depression) had his assessment this week and was really upset because the assessor basically accused him of lying about his mental health. Ironically, he's the office advocacy expert on making claims.

Just one question while I'm around though. How much credence do they give to medical evidence that you send in? Because I have never had a 100 percent diagnosis for my main condition I have letters from different doctors saying different things. But if you read them all, I think you can surmise that I can hardly walk, have speech problems and bladder weakness. MY GP doesn't do PIP letters (he says they have to get in touch with him first, which is fair enough I suppose) a physio I was seeing a year or so ago says she's not prepared to write a letter either although I can use one she sent while treating me detailing my difficulties and my (new) consultant's secretary said I'm welcome to put his name down as a reference and to get back in touch if I need any more help. He's only seen me twice though, so he doesn't know me particularly well. I think this is about par for the course from what I've. I'm sure that medical staff have better things to do than write letters.
Title: Re: They've got me at last...
Post by: Jockice on 05 Jul 2019 03:23PM
And thanks as well Sunny Clouds. I didn't see your name originally on that message there.
Title: Re: They've got me at last...
Post by: Monic1511 on 05 Jul 2019 09:26PM
Regarding medical evidence, if the letter is more than 2 years old they tend to ignore it, unless its got a specific diagnosis in it.  What I would do is complete a GDPR request from the GP asking for proof of your medical history, its a copy of your medical records and is free although the GP can take 28 days to produce it.  I know your nowhere near tribunals but tribunals wont request medical evidence they have to pay for but you can get a basic statement for free.

I'll copy the work version and post it here but I had a fight with a practice manager when they redacted anything dated before the date I had asked for.  So Fybro was diagnosed in 2010 but was redacted from the list of active problems because it was diagnosed before the date I was looking for.

If you can get a list of active conditions and list of medication I would put that in but no xrays  >yikes< please.

 I wouldn't put in too many letters,
Title: Re: They've got me at last...
Post by: Sunny Clouds on 06 Jul 2019 01:59PM
Where I had a problem...

Being a nitpicky hairsplitter with a legal background, in every box asking for extra info, I wrote 'see appendix' and then used every prompt as a sub-heading.

In short, I was too detailed.

It's very obvious from all that happened that someone looked at my application, started to read it, looked at the clock and thought "Aargh!"  They then phoned my GP.

However, that caused me much embarassment, because there were sections where I started with something like "I am satisfied that I do not meet the criteria for points for this, but I am answering the questions because you asked them."

So, for example, I told them (to paraphrase) I'd developed a urinary incontinence problem but that it was improving greatly following an adjustment in my medication and was not a problem for the requisite number of days a year.

Their written decision said, amongst other things, that I couldn't have points for incontinence (which I hadn't asked for) not because I wasn't incontinent enough but because I didn't get my incontinence products on the NHS!

I have been embarassed because I thought it would mean my GP would think I was trying it on (since I'd never told him about the incontinence) but as I'm typing this, it occurs to me that he probably just assumed I hadn't seen fit to ask the NHS for products.  In fact, given how pleased he seemed when he next saw me and said he was pretty sure I'd get it, I suspect he wouldn't have cared if I'd lied through my teeth in order to get what he considers me to be properly entitled to.

So subject to what people who know more than I do tell you, try not to be as nitpicky and detailed as me.  They just can't cope with it.
Title: Re: They've got me at last...
Post by: Jockice on 07 Jul 2019 08:45PM
Thanks both of you again. I've had a couple of days off from thinking about all this, so I'm going to start working on it tomorrow before I phone up and make my application. I'll be back soon and tell you how it's all going. Thanks again,
Title: Re: They've got me at last...
Post by: KizzyKazaer on 07 Jul 2019 09:14PM
All the best, it's not the most pleasant of forms - take your time with it and have plenty of breaks!
Title: Re: They've got me at last...
Post by: Monic1511 on 08 Jul 2019 08:22PM
RE Medical Evidence
This is the form that my work has created to allow people to request medical evidence to support their appeals.

The main points are 1 - its free but 2. You can only request this once.  We use it to try and get additional evidence when someone comes in to complete a mandatory reconsideration.  This issues we have are
the practice is allowed 28 days to produce the evidence

You have to say from what date you want said evidence - for appeals we normally only need 2 years prior to the appeal.

Practices have a habit of redacting anything prior to the date you ask for - this lead to me having an argument that we needed to see all the active problems even if they'd been diagnosed years before the date requested.

Some practices provide the information in CD format as they refuse to print anything.  This means the patient has to access a computer with a CD drive, upload the information, save it as a pdf and then either print it or email it to the advice agency.  We cant put the disc into a networked council computer as its a data risk.  I mean the CD makes a decent coaster but its useless if you cant access the information.

Its not the first time a client has tried to hand the judge at appeal the cd saying they wanted to hand in the information provided by the gp.

Have a look and see if you can amend it for your own practices and if it might be helpful but be warned - read the gp notes carefully.  a note saying Patient is going on holiday to the alps doesn't help the argument cant travel, cant socialise, has mobility problems.

Sorry when I try to attach the document the whole site hangs up so I will put the text of it below

TO:  GP Name & address
Medical records access Subject Access request.
 From 01/04/2019 HM Courts and Tribunal Service will no longer make direct requests for an appellant’s medical evidence.

 This letter is to request a written copy of my GP notes from____________________                                   
 up to present date, for my upcoming Tribunal. Please do not redact the details
 of active problems diagnosed prior to the above date.


Signature and date

GDPR changes to Subject Access Requests and fees from 25 May 2018
The General Data Protection Regulations and the Data Protection Act 2018 replaced the Data Protection Act 1998 on 25 May 2018, bringing in widespread changes to UK data protection legislation. For GPs the act brings in a number of changes, specifically the charges that were in place for undertaking Subject Access Requests.
Since 25 May 2018, in most cases, patients must be given access to their medical records as a Subject Access Request (SAR) free of charge. 
If the request is for a medical report to be created, or for interpretation of information within a medical report/record, this will fall under the Access to Medical Report Act (AMRA) - as these both require new data to be created, which is out with the scope of the GDPR and Subject Access Requests. In these cases, a fee can be charged.
A medical report/record that already exists will be accessible, for free, as a SAR. A ‘reasonable fee’ can be charged for a SAR if the request is manifestly unfounded or excessive, however, these circumstances are likely to be rare.

All that was on a word doc which is being stubborn - heres hoping this works  >x-fingers<
Title: Re: They've got me at last...
Post by: Monic1511 on 08 Jul 2019 10:16PM
Sorry if the attachment doesn’t work, I will try again tomorrow  >dove<
Title: Re: They've got me at last...
Post by: Jockice on 09 Jul 2019 11:40AM
No problem Monic. I do have letters from various doctors saying I live independently but also I am a wheelchair user with modifications in my flat. I'm taking them into the disability organisation I do stuff for tomorrow to see what they think. Then I'll take it from there.
Title: Re: They've got me at last...
Post by: Jockice on 01 Aug 2019 11:13AM
Hiya. Just to tell you it's going in the post today. I took your advice and I also had a mate who does welfare stuff for a homeless people's charity go through it with me. He reckons I should be okay. I'll let you all know hoe it goes when and as it happens. Thanks. And breathe.
Title: Re: They've got me at last...
Post by: SashaQ on 01 Aug 2019 11:51AM
Well done  >thumbsup<  >biggrin<  >x-fingers<
Title: Re: They've got me at last...
Post by: Sunshine Meadows on 01 Aug 2019 04:40PM
Well done and best wishes for smooth sailing  >thumbsup<
Title: Re: They've got me at last...
Post by: Jockice on 02 Aug 2019 11:58AM
Cheers. All I can really do now is wait.
Title: Re: They've got me at last...
Post by: Jockice on 11 Oct 2019 06:10PM
They've finally sent me a date. And it turns out that it's one when my mate (the one who does the welfare stuff) is away, so they're sending me another one. And it continues...
Title: Re: They've got me at last...
Post by: Monic1511 on 11 Oct 2019 08:06PM
Is this a date for the assessment?
Title: Re: They've got me at last...
Post by: Jockice on 12 Oct 2019 10:22AM
Yeah, it was next Monday (21st) for a home visit. But my friend will be visiting his sister (who has just moved to Cornwall - only about 350 miles away. Couldn't really ask him to come back) so I've had to ask for another date. They're going to write to me. It'll probably be Christmas Day or something. You can only change it once apparently, so I'll have to do it on whatever day they send me now. I simply can't wait.
Title: Re: They've got me at last...
Post by: Sunshine Meadows on 13 Oct 2019 10:40AM
I just got my transfer papers too, not to worry though we are both a lot more disabled than we were so we are in for a pay rise  >biggrin<

It is weird how people say cerebral palsy is non progressive, I think Wiki needs to catch up with how life is for people like us. 

( I know the version you have is different to mine)
Title: Re: They've got me at last...
Post by: Jockice on 14 Oct 2019 12:56PM
I certainly hope so. My mate was amazed that I've never even applied for care. And we've known each other since the first year at secondary school, so he knows how much I've deteriorated.

Oh yeah, incidentally, the doctors don't think I have CP anymore. I don't mean that I've been cured but they think it's something else now. I've always thought there was something strange about it. CP doesn't usually spontaneously arrive when you're five and not get diagnosed until you're 17.

The closest they can get is something called Hereditary Spastic Paraplegia (HSP) which is progressive and a lot rarer than CP, and is sometimes misdiagnosed as it. It's a weird one though, as it can only be totally diagnosed by discounting every single other possibility and it doesn't usually affect your speech (although it can). My ability to speak has gone rapidly downhill in the last few years, which is of course great for someone who was a journalist. And can no longer handwrite either.

One doctor just said I appear to have a 'rogue gene' but you can't really put that down on an assessment form so for the purposes of that I have HSP.

Good luck anyway Sunshine Meadows. And everyone else on this site.
Title: Re: They've got me at last...
Post by: Jockice on 14 Oct 2019 01:25PM
And since sending that message, I've got my new date. A fortnight today. Super.
Title: Re: They've got me at last...
Post by: auntieCtheM on 14 Oct 2019 07:10PM
You are having a fun time arn't you Jockice.
Title: Re: They've got me at last...
Post by: Sunshine Meadows on 15 Oct 2019 04:12PM

It is interesting that you mentioned the age you were when symptoms arrived because I had a similar experience in that my walking difficulties became more obvious as I got older and physically. Getting boobs and bigger hips rally messed up my walking gate. I think there are many people who had CP like symptoms as children in the late 1970s  and 80s  were expected to just get on with it and here we are in our 50s no longer able to just get on with it because of the damage caused throughouit our younger years.

https://www.nhs.uk/conditions/hereditary-spastic-paraplegia/ (https://www.nhs.uk/conditions/hereditary-spastic-paraplegia/) the description does sound like my symptoms but as I have other conditions it is too difficult to work out exactly going on.

I think maybe the way to go in the assessment is to think about how  the reasons for your limitations colour you description of what you can do. If an able bodied person was to have a traumatic brain injury that put them at the level of disability you have now they would need to be taught how to manage whereas you have ways of doing things that you worked out over time. For example I wear baggy clothes a lot of the time because it is easier to get dressed than wearing things in the right size.
Title: Re: They've got me at last...
Post by: Jockice on 16 Oct 2019 08:23AM
Strange isn't it? Apparently apart from apparently being a bit clumsy as a toddler I didn't really have any signs of disability until I was about five. There is a video of me on a family day out before that walking without any problem at all. At one point my cousin Steve is kicking a stone along and almost collides with me. I don't even flinch. In the last few years before I started being a full-time wheelie I could fall over if someone looked at me.

It was actually someone on the old BBC Ouch who suggested that I might not have CP but something called DRD, which is extremely rare but treatable. I was tested for that and it turned out not to be the case but after I showed the doctors the video (which I'd only just got a copy of myself, as I had more or less lost touch with that side of the family) they said: "Hmm. It might not be CP then."

It is difficult to work out exactly what's going on with me too, but HSP is a 'best guess' thing. Although my mate has warned me not to throw any doubt on the diagnosis during the assessment as they could use it against me if I say I don't know exactly what's going on with my body.

And I know exactly what you mean about baggy clothes.
Title: Re: They've got me at last...
Post by: Jockice on 29 Oct 2019 07:36AM
Morning. Well it's been and gone...and seemed to go okay. My mate even said the assessor seemed nice and was coaching me to give positive answers. And I have to admit I was expecting more of an interrogation. But you know, maybe that's just her method of catching people out. Plus, I found it hard to do the avoid eye contact/only mention your bad days advice I'd been given. And I had to go out for a pee halfway through. But there we go.

The only things I'm a bit worried about are that she asked me if I ever took pain relief. I told her I take aspirin (and paracetamol, although I didn't mention that) and very occasionally tramadol. Now I do very occasionally, but it's a prescription-only drug and I haven't been prescribed it for years so when I do take it it'll be very out of date. Almost four years in the case of the packet in front of me.

The other thing is that she asked me on her way out if I really use the perching stool in my kitchen. Now, my kitchen is very narrow, so much so that I stand up in it with one hand on the cabinets and the other on a block of wood on the wall (it used to be a fold-out table but I broke the fold-out bit. The stool was side-on at the end of the kitchen (just in front of the sink) and also had a few items of washing on it. But that doesn't mean that I don't use it.

As well as having a friend there I taped the whole thing (well most of it as I didn't realise it had run out at one point) as my local DPAC (which I'm a nominal member of) had a fundraiser to buy recording equipment. As by sheer chance I was the first person to use it I agreed to be interviewed and photographed for it so I'm all over their Twitter and Facebook feeds. Could have done without that really. But I am wearing a very nice cardigan (a present from my sister) so that makes it all okay. DPAC Sheffield if you want to look it up.
Title: Re: They've got me at last...
Post by: Monic1511 on 29 Oct 2019 10:26PM
At least that part is over, now the wait for the decision, good luck
Title: Re: They've got me at last...
Post by: Jockice on 30 Oct 2019 06:23AM
Thanks Monic. I am a bit apprehensive and keep thinking about whether I could have phrased certain things differently. But I suppose everyone does that. I'll let you all know of what happens. My mate and other people who know me say I should be okay, but I remain unconvinced.
Title: Re: They've got me at last...
Post by: KizzyKazaer on 30 Oct 2019 11:20AM
I am a bit apprehensive and keep thinking about whether I could have phrased certain things differently. But I suppose everyone does that

It happens with the form as well once it's posted! I just refuse to look at the copy I always make until the decision comes through, as there's no point in agonising over 'could I have done better'... Never had a face-to-face for DLA or PIP, but I would think - especially with PIP - that these assessor types are trained to ask the most searching questions.  It doesn't mean that they're set to turn you down - so a big  >x-fingers<  and hope to hear some good news soon.
Title: Re: They've got me at last...
Post by: Jockice on 03 Nov 2019 12:54PM
This could make me a marked man/ Still, my cardigan's lovely. And my t-shirt is actually a pyjama top you know. A birthday present from a friend.