makes me want to scream!

[NobbyNobbs]

well after much fighting and begging doctors who said 'no, you're fine' to refer me i got my diagnosis 12 weeks ago, and was promised all sorts of wonderful support and told that i would recieve my diagnostic report within 6 weeks.

its now been 12 weeks and still nothing. last week i called the autism unit and left a message saying i urgently needed the report as i have a DLA tribunal in a couple of weeks and need the diagnosis as evidence if i have any hope of winning.

 

no reply. i only have a couple more days to submit the report as evidence before the tribunal, my autism key worker has left and theres no replacement, the person in the autism unit wont answer the phone or respond to my messages apparently the other people in the office dont know if he's in anymore or not and i'm running out of time and options.

 

tomorrow i think i'm going to have to phone the NHS patient thing and see if they can track someone down to post the report to me. i'm also going to have to phone the tribunal and ask them to delay it (which i dont think they will do) to give me more time to get the evidence.

 

can anyone think of anything else i can do?

 

i have to represent myself at the tribunal since the key worker left and really need them to read the report so that i dont have to talk to them about it and have evidence of my issues.

[Kathryn]

How frustrating for you. You don't even know what the hold up is.

 

You could also try try writing to whoever is in charge of the unit - ideally a formal letter sent by fax, and tell them you need the report urgently, and you were promised it 6 weeks ago. Can you get in touch directly with the professional who diagnosed you? Contact your GP as well and see if they can wield any influence.

 

Apologies if you've tried all of this!

 

K x

 

 

 

 

[NobbyNobbs]

ooh, some good ideas there. i wonder if my GP already has the report as they might have been sent it directly after it was written... worth a go! they're certainly treating me differently these days (as in no longer telling me i'm making it all up) so fingers crossed

i can't reach the diagnosis team because they only work one day a month, and i just get put through to the missing person who isn't picking up his messages, but i think my mom is going to phone them tomorrow and pretty much refuse to hang up until someone either finds the report or the man who's meant to answer the phone.

[Kathryn]

i can't reach the diagnosis team because they only work one day a month,

 

Nice work if you can get it!

 

I think persistence is the answer - unfortunately you have to make such a nuisance of yourself that they'll give you what you want to make you go away!

 

Good luck

 

K x

[NobbyNobbs]

well the GP doesn't have the report either. tried calling the ASD unit 5 times, but noone is ever there. my mother gave the poor receptionist an earful and all we've learned from that is that at the moment he's spending next to no time in his office and they dont know what he's doing. she said we should write to them asking for the report and hopefully he'll respond to that but i dont have time for snail mail.

 

PALS no longer have a phone contact for my PCT so they're no good either.

 

so my mom called the tribunal to ask them what to do and i have to write to them stating what the evidence is/what iv'e done to try and get it and they will go from there but realistically the tribunal is on the 21st so it looks like i'll be going there hoping to waste everyones time and have it adjourned until i can get the evidence. otherwise it looks like they'll say they can't change the DLAs decision and i've wasted a year of everyones time.

[Tally]

You need to find out what the formal complaints procedure and follow it to the letter. If possible, find out the name of an actual person who is in charge, rather than just some kind of generic title like "head of diagnostic service."

 

Since time is not on your side, deliver it by hand, stressing to the receptionist how very important and urgent the letter is. (This might be a good time to ask if there is a specific person you can address your letter to.) Alternatively, take it to the Post Office and have it sent for next day where it has to be signed for, so you can have proof that it was delivered.

 

Start your letter by stating clearly what stage of the complaints procedure you are at. Something like, "this is a stage 1 complaint" would do nicely.

 

Explain clearly what is wrong: "I haven't received my diagnostic report within six weeks as agreed."

 

Explain why you need it: "I need to present it as evidence of my disability for a DLA tribunal on 21st September."

 

Explain what result you want from your complaint: "I hope you can provide me with my diagnostic report before my DLA tribunal." (In this case, asking for an apology or financial compensation is probably unrealistic and unnecessary - stick to one clear goal.)

[NobbyNobbs]

i'm going to write letters to the diagnostic centre and NHS PALS tonight as well as the tribunal and have them sent recored delivery tomorrow, the diagnostic one guaranteed delivered monday morning. i struggle to write letters so the pointers are really helpful

 

even if they send me the stuff now its too late, it had to be posted by tomorrow as i have to send it in at least 7 working days before tribunal. i was only given 3 weeks notice of when the tribunal was, the first week i asked my key worker to find the report (before he left), then phoned the office when he didn't get back to me. now we're out of time but thats just the way things go. you never know, the tribunal might change the DLA decision based on the fact that i do have a diagnosis, along with the other new evidence they gathered. i'm feeling more optomistic now.

[Kathryn]

I hope you get it soon- this is a ridiculous situation.

 

K x

[NobbyNobbs]

well apparently the diagnostic report is in the post tonight. finally got called this morning by the ASD unit who said they'd just recieved it and would send it on. i can only assume they wouldn't return the calls before this because they didn't want to admit they hadn't got it.

 

ive already sent the letter to the DLA tribunal asking them to adjourn it so when the report arrives i'll have to call them and see if a) the tribunal is still going ahead and b ) if it is if they will accept the report as evidence for it.

Edited September 15, 2009 by NobbyNobbs

[Kathryn]

That's good, Nobby. Maybe the tribunal can still go ahead at the appointed time if you call them.

 

K x

[NobbyNobbs]

the report arrived today, along with a letter from the tribunal stating my request to have the case adjourned was refused! my mom called them and they say since the report isn't too long or in complex language i can just take it on the day and they'll read it before they call me in.

 

the report is... incredibly depressing, embarassing, horrible and lots of other nasty words, but its also just the thing to win my case so i have to be pleased i suppose. just a bit shocking having every fault and weakness in your life (and there's 6 pages of them!) laid out on a page, including things i didn't even know were wrong with me. it also shows how badly i filled in the DLA form and now i'm not surprised i wasn't awarded what i (and professionals) feel i should get first time round.

 

i'm hoping this makes my case really strong as i'm looking for middle care lower mobility which is a big increase from just lower care

[Kathryn]

Good news, and good luck!

 

I can understand your mixed feelings about the report. I filled out my daughter's DLA forms both times and she has never seen them. She hasn't read many reports about herself - I think she would react the same way as you.

 

K x

 

 

[Grace]

Hi,

 

Been trying to work out when your tribunal is to see if I'm too late, but can't see if I am!

 

Anyway, just in case - I've been to several tribunal hearings where evidence was submitted on the day. From what I've read, I think you have every chance that it will be accepted, but it helps them if you take enough copies for everyone - the panel and the opposition.

 

The very, very best of luck/x

[NobbyNobbs]

the ribunal is monday so you're in time.

 

thanks for the advice, i've done 6 copies of the document so everyone can have one to read and will be taking the original so they can check its the real deal, but hopefully not submitting that one cos its the only copy i have on headed paper and i need to hang on to it!

[NobbyNobbs]

well i went to the tribunal. two of the people were different this time and the DWP didn't send a representative. they asked lots of questions and read the diagnostic report but said that because most of my care needs stem from a mental condition (AS) rather than a physical disability and i have a high IQ they dont count. i'm pretty sure thats discrimination but i can't exactly argue it any more as these were the people you take it to when its unfair!

 

they wouldn't make the decision then so they might decide in my favour but its pretty clear its going to be a no and i might even lose what i have.

Edited September 21, 2009 by NobbyNobbs

[Kathryn]

Sorry - forgot it was today. All you can do now is wait and hope.

 

Well done for getting through it: you've done everything you could.

 

<'>

 

K x

 

 

[NobbyNobbs]

well now i'm in a bit of a bind. the decision arrived today to keep me on lower care, no mobility but some other thoughts have come too.

 

the people at the tribunal (2 different from last time) seemed to be under the impression i was there to challenge the medical report that was made at my request rather than the decision made by the DLA. the whole time was spent going through that and asking if i agreed with each section, to which i (mostly) replied yes since it was a fair assessment of my physical needs. i dont know where they got that idea from.

 

they then stated that the criteria for awarding DLA were based solely on on the physical ability of someone to carry out tasks, so of course i didn't qualify. but... this is what the DLA decision makers guide has to say -

The ability to plan a main meal is also important. Some people who have a mental disability may be able to carry out all the different tasks involved separately, but may still be unable to prepare and cook a main meal. This is because they cannot plan it or do all the necessary tasks in a logical way without help... The lack of motivation to cook or the fear of cooking must be the result of mental disability.

 

and

 

Attention must be provided in the physical presence of the disabled person and will generally involve physical or personal contact. It may also be given by means of the spoken word, only where there is physical presence... encouraging a person with a mental disability to eat, wash, dress or get out of bed where he would not otherwise do so.

 

so now i dont know what to do. my evidence more than proves i meet those criteria under mental disability as it clearly states those circumstances and the care provided by my mother to achieve them.

 

they then also made no mention of the mobility componant or asked any questions even though i was arguing i should get low mobility. i've been granted funding for a support worker to take me out because i can't go out on my own except to certain routine places where i always do the same thing...

The lower rate is payable to people who can walk but are so severely disabled mentally or physically (see DMG 61207 et seq) that they need guidance or supervision from another person most of the time when walking out of doors (see DMG 61391 et seq). Disregarding any ability the person has to use routes which are familiar to them.

 

they then kicked me out at spot on 4:30 and said they'd make a decision and post it to me, even though we hadn't finished going through the report, let alone discussing why i felt the decision was wrong/what my new evidence showed etc.

 

so now i dont think the decision was fair. but i might just be being obsessive. and my parents dont ever fight for anything and can't understand why i'm bothering (even though my mother wants carers allowance for looking after me)

 

i've put all of this in letters to the DLA before, including the quotes, but i couldn't talk about it at the tribunal (they refused to let my mother explain for me, making me answer all the questions, uncluding demanding i answer ones i said i couldn't understand or explain.

 

they also jumped between insisting i remember what i was like in may 08 because thats when i filled in the form so thats what they were judging and telling me stuff didn't matter because now it was controlled with medication...

Edited September 22, 2009 by NobbyNobbs

[Sally44]

That does sound strange to me. Because as you say DLA is not just about physical disability. I know that it is harder to prove and get a higher rate of care for the kinds of disabilities that those on the spectrum have, but it is achieveable. I know that mobility is harder to get than care. And I know other parents who have fought and eventually won over 'mobility' because their child might 'refuse' to walk or become very stressed/anxious and have a tantrum due to sensory overstimulation. Or older children who need accompanying on trips because they might get lost, over stimulated, have difficulty being flexible with public transport etc or sensory issues or toileting issues.

 

See if you can appeal against the decision (if you are not happy with it). And can you get any advice from organisations such as the NAS about this. And is there anyone or organisation that can accompany you. What about Disability Direct, have you tried them?

It also seems unfair that someone may have the kinds of difficulties, that can be common of being on the spectrum, which might make it very difficult for them to defend their case and argue the point. Eg. you don't get the right level of DLA because you filled out the forms incorrectly and you filled out the forms incorrectly because that is some of the difficulties you have. Arrghhhh!!!

 

All of this is so time consuming, but if you feel you have a good case, and have been advised as such, then it might be worth continuing if that is a possibility. Sometimes it is only those that keep on that get the result.

[Sally44]

I've just looked at the website, and it is a regional charity, but they may still be able to advise you or give you information about a service more local to you. Their website is www.disabilitydirectderby.co.uk.