Refused or Appealing DLA Decision/Post here

[Superstottie]

Just had a look at that, makes me wonder how the heck they refused my claim as it backs up everything I said I have trouble with, obviously their healthcare professional knows more about it than Prof Grahame!!!

[everhopeful]

I sent an updated version of the Disability Handbook on HMS. I highlighted the areas that are particular to me. I also included a letter of support for my claim from my GP. The Atos medical was with a very unprofessional Doctor. My 8 page letter of complaint has been seen by a lady at DWP who said that it was very compelling. I now have to wait up to 4 weeks for the Atos investigation into the statements I have made about his lack of correct information about me and the way that my conditions affect me. (Did not record my heart rate of 157 bpm even though I was wearing a monitor and he agreed at the time that it was very very fast!!!)
So once the Atos investigation is done they will write to me and the lady at DWP. Will be interesting to find out what he has to say for himself. I have written in my complaint letter that I would have to show a tribunal what happens to me when I stand up for a couple of minutes to prove that I am NOT a liar......and he is!)
I just hope there's a phone handy for when I hit the deck!! Being sooooooooooo cross with this imbecile has given my the strenghth from somewhere to carry on the fight!
The next stage would then be to go to another dm with ALL of the paperwork including my complaint. I'm keeping my fingers crossed as my scooter needs its annual service. My scooter insurance premium is up for renewal. I wanted to get some spare batteries and my car hoist will need an annual maintenance check as I have had it for nearly a year. These are the sorts of aids that keep me going but cost a lot and through no fault of my own. I WILL KEEP FIGHTING and hope that all of you sharing the battle can find the strength to carry on. Liz xx

[barkingmad]

Well I hope you manage to get a successful outcome...I cant believe that he basically called you a liar!

[everhopeful]

Hi Barking Mad.
Just to clarify, he didn't call me a liar to my face, but I felt that by having my claim form compared to his report it would certainly look like I had made it all up. He was very polite through the medical, but missed all the really important points that I had gone into great detail to explain to him. So he wrote the report to look like there was nothing wrong with me. I have written this in my letter of complaint (that his report makes it look like my claim was not true.) I said that it made me very angry when I realised all of the omissions. Just hope the letter does some good and it doesn't end up just being pushed into a filing cabinet. x

[Superstottie]

I must ring them to check that they took my complaint on board and removed the Healthcare professionals advice from my claim, as told them that I wanted to go straight to appeal otherwise as dont want any more stress or wasted time!

[boyleyuk]

My daughter aged 5 has today been turned down for the first application and im waiting to get the letter to find out why.

My daughter has been diagnosed for HMS and she is also lactose intolerant but it appears the claim was turned down on a report from school and nothing else.

She has good and bad days but most of her pain is during the night and not during school time and she regularly goes over on her ankles and falls over. She regularly sees a physiotherapist and has seen a consultant for this and regularly takes calpol and ibuprofen. She also has to wear Pedro boots with insoles and is unable to wear normal shoes.

Does my daughter have to be in pain 24/7 for her to receive DLA?

do you think its worth me appealing?

[barkingmad]

Well I hope they take both your views into account..it really does make blood boil!

boyleuk,
it is always difficult to get DLA on a pure HMS basis I am afraid and probably more so if its a child. It cant hurt to ask for the decision to be reviewed but you do need to make sure you have evidence to stack up with it. The problem with the child at school, is as you say the fact that a lot of HMS children act differently at school than home...by the time they have ran around school all day it is more likely that parents would see a problem at home, its the end of the day for a start and the end of optimum functioning, the child has been working hard to keep up with their peers, and school is a great pain management tool in that friends and school activities are pain distractions..its usually only when it comes to assemblies and towards the end of terms that schools may see pain behaviour, usually because in assembly they are made to sit cross legged and not allowed to fidget and towards the end of the term the children are tired and less able to cope with the pain. It can also be easy for schools to misinterpret pain behaviours in that they may see a child who is in pain and unable to express it as an overly emotional child, a child who cries easily and it 'too sensitive' the same could be said for children who refuse to sit still and are unable to focus on their school work, teachers may view this as misbehaviour or poor sleep hygiene at home etc.
The rules are the same in that you have a right to apply if the child has been 'disabled' for 6 months and is expected to last longer that a further 3 months...but you are going to need to have medical professionals on board, various statements from school, family and friends, GP's etc to convince them that you just dont have a child who is clumsy and accident prone (which is not classed as a disability). You will also need to prove that your child is different from children of the same age and that activties that children of this age can do independently your child cant...that is going to be very hard for a 5 year old as some 5 year olds are more advanced than others.
But you have the right to apply and ask for the decision to be reviewed if you feel the claim has had an unfair decision.

[Superstottie]

Just had a letter to tell me that a Doctor will be coming out on 2nd November. He is having to come quite a distance though as he is coming from Manchester and thats about 100 miles from me! Time to start preparing lots of info for the doc on EDS and a list of the problems I have as I will no doubt have a massive attack of brain fog on the day!

[star gazer]

supperstottie, good news and some progress but do not race round like a mad thing to try and tidy the house, I know when I have a visitor the temptation to tidy for my own pride is overwhelming but just let things go, because even if you are not well enough or able enough to tidy but make the effort for his visit he may assume that you can manage all the time. I know this is an assumption on my part, most of the time I know we all struggle with just the smallest of tasks but it's just getting over that feeling of needing to tidy up for a visitor, just leave it all, and if you don't feel well enough or able to dress then don't, stay in your p.j's if that is what you would do if you were having a bad day, what I am saying is be honest but don't exert yourself and go to any effort just because he is coming. keep us posted on how the visit goes, and good luck.

boyleuk, when I applied for my sons dla in January, he had already been absent from school for a year and the school had letters from his consultant saying he was too ill to attend, I am up most nights with him, sometimes all night (he is 16) as he can get quite poorly, he was unable to go out with friends or walk very far etc etc. even with all his care needs and consultant paeds letters he only got lr care and lr mobility based on how his illness affects him, we did not have eds dx or atrial tachy & pots dx at that point, but the actual dx makes no difference, it is purely how the disability/ illness affects/impacts on daily living. It is unfair that the dwp only took the schools info into consideration. as she is only 5 do you still have a health visitor who could write a statement, also it would seem that they didn't take into cosideration care needs at night. Also is she able to walk/run without pain or would this cause further injury, one of the other points of evidence is fidgiting,tiredness, help with fine motor skill, have any of these been picked up at school, as barking said assembly and carpet time are good indicators of a problem, perhaps the senco could do an observation of gross motor and fine motor skills along with ability to sit in chairs or on the carpet and how she supports her body when doing this,also p.e is another point where a problem may be noticed, balance on equiptment, falls stumbles. Does she fall over regularly at playtime, I think it would be perfectly reasonable to request this (I spent many years teaching children with special needs and an observation of this sort is not unusual) The school may see her behaviour as normal but clumsy ie: a child that falls over a lot or fidgits too much but of course we know that those are all part of the hms package, if she does have these problems in school then it might be worth them reviewing what they have written about her, it might also highlight any support she needs during the day. One of the problems with my son was eating using a knfe and fork, his fingers bent back so much he was unable to use cutlary effectivly and so didn't eat very much at all, he has adapted cutlary now and various ot excercises to build up hand strength.
Best wishes
star gazer

[trekster]

to all the so called professionals that really dont get EDS.
Good luck to anyone appealing DLA.

[Superstottie]

Thanks SG, I never make much of an effort with the house anymore! I used to be a bit OCD when it came to cleaning and things had to be in their place before I would even go out the house but I just cannot do it anymore, which sends me mad and makes me shout at everyone else that they haven't done it, but they dont see it like I do!!! I haven't got any stuff to back my case from anyone yet as I went away for a few days, which turned into a few more days as I couldn't face the journey home (3+hours in a car is not good for me!!) I have also lost ALL faith in medical professionals now, as I went to see GP today as they had a letter from my Physio about me going to pain clinic. I am fuming as she stated that I have a 'diagnosis' of hypermobility syndrome and that even after being taught core strengthening stuff that she cannot understand why I am still in pain and on morphine based painkillers!! She obviously does not believe me and thinks that I have dreamed up my condition, the GP couldn't understand the need for the inverted commas on the Diagnosis!!! I am beginning to think that I don't stand a chance of the doc believing me on Wednesday when not even my Physio understands my condition and how it affects me! Feel like just cancelling it and giving up after the day I have had!

[Crazysheep]

Don't give up, my last physio didn't understand hyper mobility either but I hope my new one will lol. I live in hope and I'm sure that's exactly what most of us do on here. We hope and prey we get the professionals that do understand do believe us and understand the pain that we in. We aren't making it up, as I lay in bed typing this on my iPad, with a nasty pain in my neck, middle back, shoulder, knees and my hip lol. I truely think we just need tv programs made about us or something, something to give awareness then things might change.

I've kinda gone off on a tangent, but bottom line don't give up, showing the pain and how you deal with it, in your own home is going to be a lot easier than in some office. Just be honest, and we can all hope that that is enough, it's all you can do at the end of the day. Hope all goes well and good luck

[star gazer]

Hi supperstottie, remember what they are looking at is not the name of your condition but how it affects you, I did not have a diagnosis or name for what was wrong with me when I applied, I just knew i had a massive amount of pain limited mobility etc but didn't know why for the dwp/ dla it really is a case of how yor illness impacts on your daily life so just eplain that side of things. a mistake I made with the pots dx was to list problems that pots causes and can cause but i didn' realise that what they wanted to know was how i was affected by pots. This time round (just sent renewal) I have the eds dx but again what they willl look at is how my own life is affected by eds and not necessarilly a general overview of eds. My son didn't have his formal dx at the time of his award either. Don't give up on the ignorance of some of the medical bods who simply don't understand hms and its complications, you know how this affects you and limits what you can do and that is what the doctor who comes out needs to see. Good luck tomorrow, I will be thinking of you.
love star gazer

[Superstottie]

Thank you very much StarGazer, I have done a bit of tidying today, I know everyone says that you shouldn't but you can't really tell!! I am now paying for it though and have had maximum pills and sat with tens on! My appointment is for 1pm tomorrow so I am planning on having a read through all the info I have given them in the morning to make sure that I don't manage to contradict myself by forgetting dates etc. I can only remember the date of my diagnosis as it's on my signature!! Should really get to bed so that im not stupidly tired, but I could always have a nap before he gets here tomorrow - I keep saying he, but it could be a woman (though looks like a mans scrawl on the letter!)

I will keep you posted on how it goes, does anyone know how long it usually takes to hear anything from the DM after the medical? I hope they don't keep me worrying about it for weeks and weeks that I have made a hash of it!!

Bex!
x x x

[Superstottie]

Well it's done! He was a rather nice scottish gentleman, he wasn't from Manchester, he was from Cockermouth which is about 50 miles from me. He was fairly nice and seemed understanding, the only annoying thing was that he said he would go away and look up an article he read in th BMJ a few years ago about HMS, why didn't he read up on it BEFORE he came to see me?? He did seem interested in it though, and did a basic examination on me like blood pressure seated and standing, though I had only just walked across room and sat down so not sure how accurate this would be for showing up OH. He did a few bendy things, was interested in my neck movements after I told him Physio said I have the range of a 12 year old! I am sort of expecting him to report that my range of motion was very good though, but that's the whole point!! I went in to as much detail as I could about what I need help with and why, explaining that I only have a bath every 3-4 days, or longer if I am not up to it!! (eeeeewwww I know!) and that when I do my husband has to help me up the stairs, undress and into and out of the bath, getting dried and dressed again and that he has to wash my hair, and this is all with the aid of a bath lift thingy and then I won't be upto doing anything else that day and usually have to have a sleep to recover.

Oh well, what will be will be, I will just keep everything crossed (that doesn't hurt - that wont be much then!) and carry on fighting if I still don't get an award!