My DLA to PIP journey

[Nystagmite]

In May of last year, I was diagnosed with a condition called Hyperacusis. This means that my hearing is too sensitive and it can be quite painful at times.

 

In December, I reapplied for DLA as my needs had changed.

 

According to the letter I received in January, they can't take into account things that may happen. The chances of me having a meltdown / being very distressed (I need help when this happens) when it becomes very noisy are quite high.

 

I was told that to claim DLA, the needs have to be reasonable. But it seems as though they have ignored everything that's been written about this.

 

I am confused as to how they say they can't take things into account that may happen - but they've agreed I need help cooking a meal because I may burn myself or I may not cook the food properly.

[Guest]

it does seem bizzare, I hope someone comes on that can help.

[estellyn]

This is quite a typical arugument for the DWP to make - I've seen it many times.

 

It can be appealled, but success depends very much on your individual circumstances - is the condition impacting another condition, for instance ASD. Is there the possibility of harm coming to you during a meltdown. How well can you control your home environment?

 

Just out of interest, do you receive a mobillity component?

[Nystagmite]

Yes, I receive mobility. But that's more for sight impairment than anything else.

 

I can't really control the home environment that well. Not helped by neighbours who think it's ok to let the dog bark all day and slam the door all the time.

 

It depends on what you mean by harm. Because I just tend to walk away. But there's also the risk that there will still be a lot of noise about. There's the issue of finding somewhere safe that's quiet too.

[estellyn]

See, when you go outside, you're covered by the mobility section of DLA. For care component it will be about requiring supervision in order to prevent harm, unless you can show that you need assistance frequently during the day due to the issue. How often during the day do you need assistance with care needs, including this?

[Nystagmite]

It's usually several times a day. The problem is, I am unpredictable. So some days very little help is needed and other times, (more often than not) I need help for most of the day.

 

There are also other issues they've ignored. In the disability handbook, it states that those with IBS are expected to deal with it themselves unless they have another medical condition preventing them from doing that. I was told to wear nappies; but wasn't told how as someone with limited vision, I can change them myself. Wet wipes were suggested; but it wasn't explained how they'd help. I use them and they don't solve the issue.

[Nystagmite]

I got my appeal papers through today. DLA have contacted ESA, which has made no difference; as both agreed that I have difficulty with communication. (there are other descriptors I meet for SG; but I assume that as soon as one is met, they don't read the form any further)

 

Really starting to get annoyed about this now - I have demonstrated time and time again that I have significant care needs, which they seem to have ignored. it seems to be based a lot on the fact that I have multiple disabilities, which it seems they can't deal with.

[dpick]

Totally agree with you Nystagmite DLA/ESA do seem to have problems dealing with a person who has more than one medical condition. We were lucky in that one of my wife's hospital consultants asked us if we had any other problems and I just mentioned the dificulty filling in DLA form (this was some 10 years ago when the forms were simple to fill in) He then said he would send us a letter to enclose with the forms, the letter arrived about 3 weeks later. This letter included all 6 conditions that my wife is being treated for and signatures of all 4 doctors/surgeons dealing with my wife. I included the letter with the DLA forms and some 8 weeks later recieved the decision from DWP full rate mobility and full rate care without my wife even having any form of medical.

 

This was made easy due to the fact that one consultant cared about his patient and any problems they may be having outside of the hospital care. I know from later experence that my wife experence is a once in a blue moon but I do believe that a letter from a hospital consultant can be a great deal of help with DLA/ESA and the soon to be dreaded PIP.

 

all the best with this dpick

[Nystagmite]

Thanks.

 

Part of my issue is that I don't see anyone about my Autism and was only told (I found this out 4 months after I saw someone about this) that I may have it and don't have a proper diagnosis. There are no services for adults in my area.

 

Because I'm incurable and there's no treatment for any of the issues I have, my only contact is either with a GP or a consultant once a year to check that my sight hasn't got worse. Everyone else has discharged me.

[worried33]

I agree the system is poor for dealing with multiple conditions.

 

The impression I get is they look for a condition that is severe in both ESA/DLA decision making. But they dont take account that having multiple conditions even if each is not severe can be as disabling as having one severe condition.

 

My opinion is tho DLA seems to be worse than ESA, the ESA descriptors can at least catch things, whilst DLA decision making seems more reliant on confirmed medical diagnosis.

[45002]

Just to point out anyone who is receiving DLA now and has a "Change of Circumstances" from 07/10/2013 will be assessed under PIP ....

 

Any New claims for DLA will be under PIP from 08/04/2013.

Edited March 28, 2013 by 45002

[Nystagmite]

As mad as it sounds, I am actually quite tempted to claim PIP instead of waiting until / when I am assessed anyway. The descriptors for PIP seem to fit me better than DLA.

 

To make it worse, a lot of what I've written on my form, appears in the decision makers handbook - ie, it's normal stuff that you'd expect to see in someone with my disabilities. The only exception being my visual impairments; as these are quite rare and more complicated than "I can't see".

[45002]

Nystagmite

 

Have you ever tried looking for a support worker/local charity around where you live to help you with your claims and appeals !

[Nystagmite]

There is a local support group; but the branch officer is on the spectrum too and has her own issues. She has helped me a lot with housing stuff.

 

I do have a social worker; but after meeting me for 2 minutes, she decided that low rate care is the rate I should be on.

[estellyn]

As mad as it sounds, I am actually quite tempted to claim PIP instead of waiting until / when I am assessed anyway. The descriptors for PIP seem to fit me better than DLA.

 

 

Yes, I'm considering doing this for my husband who has mental health issues - especially as getting a higher PIP award early will trigger premiums which will be protected under transitional protection under UC, whereas get a higher PIP award after UC and no premiums.

[Nystagmite]

So, there were pilots of PIP which started in April. Anyone heard about how this is all going? Or is it too early yet?

[Conniff]

[Surfer01]

Not every one is on Twitter or Facebook so it would be helpful to know the contents.

[RaeUK]

It says:

 

High Court grants permission for judicial review of PIP mobility provisions #rightsnetnews

[Nystagmite]

I missed my DLA appeal which was last week. (I am not well at all right now) I received a letter about this yesterday.

 

They said if I don't attend the next one, it'll be decided there and then. They then wanted to know the following:

- has my vision become worse and

- has my colour vision got worse

 

Both of these are actually impossible to comment on. They work out how much vision you have by using the eye chart. Due to the conditions I have, it has been argued that the eye chart isn't that accurate. My vision can be affected by things like tiredness. Last year (or the year before, can't remember) I had 2 appointments in 2 weeks at the eye infirmary and both times, had an eye test. Both times, the results differed.

 

The way they determine whether you're colourblind is by using those circles with numbers and you have to try and work out the numbers. Except, I don't have a huge amount of vision in both eyes, therefore, the result would be affected in that way. I've done this test 3 times in the last 3 years and all 3 times, have only been able to read one or two of the numbers.

 

I've also noticed they've mentioned nothing about the other conditions I listed on my claim form. Does this mean they're completely ignoring the other conditions? I made my original claim for DLA 5 years ago and claimed originally on sight impairment. I am now claiming on the basis of the original sight impairment plus another sight impairment, Autism and arachnoid cysts. I don't have the typical symptoms of Autism (I'm a female and we're different to males) and have a condition for which there are less than 200 people in the UK with it.

 

My Autism and the ACs have been ignored completely - despite me constantly writing on my form that these both require care needs. Not seen anyone about either condition since diagnosis, apart from ongoing issues with headaches and other associated issues. (not seeing a specialist about any of this)

 

DIAC won't help me because they've decided I won't qualify, which they decided within 5 minutes. I'm not well at all either - the pressure in my head appears to be raised slightly, which is causing a lot of head pain.

[estellyn]

If all your conditions are on the DLA form, then they will all be looked at during the Tribunal.

 

Will you have a written submission?

[Nystagmite]

I don't have a written, submission, no. DIAC won't help me and I'm really not well again.

[estellyn]

I'm happy to help, but I'd need more info re how your conditions affect you, mobility problems, and what care you need in order to put something together.

[bedofweeds]

I don't have a written, submission, no. DIAC won't help me and I'm really not well again.

 

Many are in your position with no outside help or support. This was the intention of the government.

 

I've come to realise that trying to fight the DWP is now almost impossible - many like you just don't have the strength.

 

Many now just accept it as part of the normal life of being ill and disabled.

 

Good luck, you are not on your own.

[Nystagmite]

I'm happy to help, but I'd need more info re how your conditions affect you, mobility problems, and what care you need in order to put something together.

 

Thanks.

 

Current issues are:

- communication (reading is difficult due to sight loss and many people don't understand me when I speak)

- can't follow directions - ie, if you tell me to "turn right and then turn left" - that confuses me because you've not actually said how far to walk after turning right

- can't see well enough to judge speed / distance of traffic

- problems getting dressed - I may put on dirty or unsuitable clothing

- - I have problems interacting with people I don't know. I can't stand noisy crowded places and usually warn friends that I may be outside because it's got too noisy and I start to become agitated and fidgety. If I don't remove myself, I will then have a shutdown and go non-verbal

- can't cook a meal due to not be able to read instructions due to sight impairment, can't read numbers on cooker, etc

- if I am doing something, (ie, playing a game on my computer) I can sometimes completely forget the time

 

Will think of more later. But I am still not well.