Campaign on Conversion Disorder

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yellowted

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Joined
Jan 23, 2011
Messages
44
Location
UK
#21
hi Bonica & Davalay,
Sorry to hear you are suffering Bonica,
I would really love the DWP statement of how this should be treated as i could really use this in my battle to get my home adapted! my house was my late partners parents home since 1930, my partner was born and died here, i have lived here for 18 years, i have sad memories of when my partner was ill but even more happy ones of when he was well. my home is very important to me, it was left to me so i would always have a home so i really do not want to lose it, but i really would like to get as well as possible too so this is an extremely difficult decision for me to make, i have just found out that my care team applied for funding to put me in the Maudsley back in 2009 and it was rejected on the grounds that my borough does not comission inpatient stay from the Maudsley, so i am not convinced they will approve it this time, in one sense i hope they don't then i know my home is safe, but on the other i would love to go to get as well as i can. i know i will havew an assessment at Kings hospital first before they decide if i am suitable to go in and think i will say there about the chane of losing my home if they keep me for more than a month, see if they and give me home release every few weeks for a weekend so my benefits keep going so i can pay the mortage! if they can then i will not hesitate about going in!i don't think there are any neuropsychiatrists in my area as i have been told the Maudsley is the closest place, it is the opposite side of London to where i live, but if they can see me as out patient then i wouldn't mind even having to sleep near there a few nights a week so i an in time for treatment, anything so i can keep my home!!!
I agree with you, i have a strong feeling this is not going to be a quick fix job, regardless of what my care co ordinator thinks, its just so frustrating that on the grounds some people recover quickly they assume everyone will so have nothing in place for those who don't!
any how thats me ranted out for the evening!!!
Take Care both of you Xx
Ted x
 
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FightingHard

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Joined
Jun 13, 2011
Messages
5
#22
Hi all, I realise this thread was started a fare while agi, but I have just had a confirmed diagnosis of CD.

I tried to apply for Disability Living Allowence, but was told that because what I have isn't a perminant disability that I would not be able to claim.

I've now applied for Employment and Support Allowence as that's the only other type I can apply for. I am due to have the phonecall tomorrow to see if I am eligable for this instead.

I cannot walk unaided, some days can't even walk at all, I am perminantly catheterised because my bladder has gone into failure, I can only see out of half of my right eye, suffer dizziness almost every minute I'm awake, my left arm goes in and out of weakness and over the past few days my sight has began to fail. I would love to be working (I used to work as a carer, and loved my job!) but with all of these symptoms it's virtually impossible.

Does anyone have any advice on the benefits because I have nearly run out of savings and can't love on fresh air unfortunately.
 
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bonica

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Joined
Aug 21, 2010
Messages
37
#24
Here's the section on Dissociative Disorders, which includes Conversion Disorder, in the DWP's Disability Handbook:

http://www.benefitsnow.co.uk/handbook/dissociativedisorders.asp

Unfortunately, CD IS permanent for many people, as evidenced by this & other forums, so don't be fobbed off by them telling you it isn't. Yes, for some it's short-lived & never to return but others aren't so lucky & suffer for years.

Take Care.

Have also PM'd you
 
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yellowted

Active member
Joined
Jan 23, 2011
Messages
44
Location
UK
#25
ask your GP or care manager to refer you for a self directed support assessment. this is the new in thing! it is a payment which allows you to choose your own care/support. it consists of a few forms and a financial assessment , but help should be offered by either adult services , social worker or recovery worker to help you complete them. the payments are every month or a one off, it can be used for employing a carer/pa not only for in your house care, but for assisting you to socialise, exercise etc and to buy aids which are not provided by the services
I get it and it has allowed me to become an active member of society again, I employ a Personal assistant, bought software which reads and types what I say, it is typing this, all i am doing is talking! I now volunteer as it bought me a mobility scooter!

Have you applied for a blue badge or Taxi card?

I have Dissociative motor disorder, a form of conversion disorder, and get DLA, the trick is to apeal the decision, often they refuse first time around then give it! you need to say your condition is deteriorating, and complete the form as to how you are on a worst day not a good one! also say what help/assistance you need not what help/assistance you get

hope this helps.
good luck and apologies for any spelling mistakes!
 
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Divinity

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Joined
Oct 28, 2010
Messages
56
Location
Gloucester,UK.
#26
Hi all, I realise this thread was started a fare while agi, but I have just had a confirmed diagnosis of CD.

I tried to apply for Disability Living Allowence, but was told that because what I have isn't a perminant disability that I would not be able to claim.

I've now applied for Employment and Support Allowence as that's the only other type I can apply for. I am due to have the phonecall tomorrow to see if I am eligable for this instead.

I cannot walk unaided, some days can't even walk at all, I am perminantly catheterised because my bladder has gone into failure, I can only see out of half of my right eye, suffer dizziness almost every minute I'm awake, my left arm goes in and out of weakness and over the past few days my sight has began to fail. I would love to be working (I used to work as a carer, and loved my job!) but with all of these symptoms it's virtually impossible.

Does anyone have any advice on the benefits because I have nearly run out of savings and can't love on fresh air unfortunately.
Sorry if this sounds rude or something but what proof is their that you actually have Conversion Disorder and not something else?

The things you say that you are having problems with sound like symptoms of other things that have similar symptoms to Conversion Disorder.
Have you had a lumbar puncture test done or a mri done with a contast agent?
Or were you just told that you had Conversion Disorder and thought to yourself well I must have that as they are saying that I do?

I ask this because you say that you can't walk unaided, bladder failure, eye problems, weakness in limbs and what seems like possible vertigo.

I apologise in advance if there is sufficient proof that you have Conversion Disorder. :)
What help and support do you have?
 
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FightingHard

Member
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Jun 13, 2011
Messages
5
#27
Thank you Bonica, I have replied by email.

Yellowted, I will ask about the Self Directed Support Assesment, but I will speak to my mental health care coordinator instead of my GP as I'm guessing it's more in her area than his.
I have a blue badge already, have has this for a few months now.
I spoke with the JobSeekersPlus people this morning and they are going to let me know what benefits I am entitled to if any or none. I did stress that I was not working, not able to work and have little savings left to live on. I hope this manages to speed up the process a little because if this fails I need a new idea.

Divinity, I believe that the evidence that they are going on for the diagnosis of Conversion Disorder is the fact that I had a clear MRI scan (done 5 months after I woke one morning with no use of my legs!) and the fact that I have a pre-diagnosed emotionally unstable personality disorder.
I haven't had a lumbar puncture test done, or the MRI with contrast agent, just the normal MRI.
I have accepted the CD as a diagnosis, although I have always wondered if they'd have run more tests if I didn't already have a diagnosed mental health problem. This may sound a bit off, but it's always how I've felt.
The only help and support I have is of my parents, best friend and fiance. My GP does as much as he can, but obviously sees tens of patients more than just me during a day. I have a neurologist whom I've only seen 3 times in 7 months (twice in hospital after being asked by the medical team looking after me, and once as an outpatient) and I see a urologist whom I've only just started seeing but seen once before my op, once on the day of my op and twice since on ward rounds.
In terms of social support or support for living, I don't get anything.
 
The_Cigarette_Monster

The_Cigarette_Monster

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Mar 9, 2011
Messages
304
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...
#28
Well you've certainly educated me; I thought cd was just a physical way of displaying emotional pain (like I knew a girl who was rushed into a&e cos of belly pain but was told it's all in the mind cos her mum had recently died and she hadn't been coping) but I've gone onto Jon Stones webby and ts completely changed my view! I hate it when people are ignorant of certain conditions, even epilepsy which is reallycommon!
Do you ever feel accused when speaking to a neuro? Because I remember going to one who told me I was faking it because of childhood trauma, hadn't even asked about my history, and it was only when we got video evidence that he believed me. It must be awful to have that all he time. When I was 'accused' (sorry if that's the wrong term) I felt awful, kept thinkin it was all myfault and that I was making myself have fits... God I feel a lot if sympathy towards you guys :) xx
 
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tinkerbell007

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Joined
May 23, 2010
Messages
211
#29
Hi Fightinghard,

Who ever has told you cannot have DLA is wrong im currently fighting them I have had it for three years and the welfare rights are backing me. No one knows how long it will last I would re apply or appeal the decision I would also ask your local CAB or welfare rights for advice. I hope this helps. As for esa I have no idea because im on incapacity benefit and dregging being moved onto ESA. I cannot move at all and use dragonnet and my voice to reply to letters emails etc.
The reason I lost it is because my consultant did not fill in the form properly and basically put there was nothing wrong with me and has since admitted he did not take enough time and does not care about the form but I am ill and should not work and need constant care. Idot to say the least I do not see him anymore.
 
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Divinity

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Joined
Oct 28, 2010
Messages
56
Location
Gloucester,UK.
#30
Well you've certainly educated me; I thought cd was just a physical way of displaying emotional pain (like I knew a girl who was rushed into a&e cos of belly pain but was told it's all in the mind cos her mum had recently died and she hadn't been coping) but I've gone onto Jon Stones webby and ts completely changed my view! I hate it when people are ignorant of certain conditions, even epilepsy which is reallycommon!
Do you ever feel accused when speaking to a neuro? Because I remember going to one who told me I was faking it because of childhood trauma, hadn't even asked about my history, and it was only when we got video evidence that he believed me. It must be awful to have that all he time. When I was 'accused' (sorry if that's the wrong term) I felt awful, kept thinkin it was all myfault and that I was making myself have fits... God I feel a lot if sympathy towards you guys :) xx
That is exactly how I feel, from my point of view that is how I feel they are being with me.
 
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tinkerbell007

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Joined
May 23, 2010
Messages
211
#31
Thanks for that, I also have had this problem and am have moved so hopefully the new docs I will be under will be better.
 
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yellowted

Active member
Joined
Jan 23, 2011
Messages
44
Location
UK
#32
definitely DLA is given for conversion type disorders, mine has just been upped to high rate mobility and highest rate care, also have just heard that Adult services are finally going to support an application for a DFG (disabled facilities grant) to adapt my home, after fighting for it for 2 and a half years!! what swung it was evidence that it is often a long term substantial condition, recruiting an IMCA advocate, me putting in a formal complaint for neglect of human rightsand discrimination based on diagnosis, and me talking direct to the head of mental health services for my area!!

moral of the story, keep fighting, you will succeed eventually

good luck x
 
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tinkerbell007

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May 23, 2010
Messages
211
#33
My consultant filled in the original questionnaire wrong and they said i was entitled to nothing something i am appealing but it will take about two years for a hearing. So i have had to reapply as i have gotton alot worse. do you have any advice for me at all. i have alot of sersious syptoms i.e blackouts without notice movement problems. who are the IMCA also sorry for asking but im at my witts end and i feel like giving up because they are making my life difficult.

Thanks
 
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yellowted

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Jan 23, 2011
Messages
44
Location
UK
#34
my advice is to fill in as much of the form as you can yourself, you know your individual difficulties and how they affect you, your consultant only knows your dx.

never say what you are like on a good day, always put down your worst days.

put in every detail, use more paper attached if necessary.

put in all the help you need not just the help you get.

be as honest as you can, do not say you can do things which you struggle with, tell them it is difficult!

with regards your blackouts, make them aware that you need someone to be around/help you in the night incase you blackout going to the loo,
and during the day to keep you safe as blackouts can happen when crossing the road, carrying hot liquids, retrieving things from a hot oven, on the stairs etc.

mobility problems - you need help to clean your home, carry shopping, hang washing, assist on stairs/going out, ......etc.

IMCA = independant mental health ??capacity, consultant, capability?? advocate, mine is from POHWER they have a few offices around the country, but there are other advocates who are trained in mental health cases. i would suggest asking if they are imca trained as that is the best m/h advocacy training around.

do you have any help at all? friends, family, council paid carers, financial - benefits? I ask as there are loads of things you are entitled to
Direct payments - these allow you to choose your own carers, help with socialising etc
benefits are changing so you need to ask your citizens advice beuro about these
blue badge-can be got without DLA mobility certificate by getting doc to complete part ofthe form
help with taxi fares (taxi card or voucher schemes are run by every council)
disabled persons freedom pass helps with travel on public transport,
disabled rail card gives 1/3 off longer rail fares
cinema card gives cheap cinema access
swim pass - through your doc/council, gives free access to local pools for you and carer
ask your local council what else is available

you can get home eye tests,
help the aged have a handy man service which disabled people can use too, it costs but is not much and is very useful

good luck x

if you want any more info or are struggling with forms let me know and i will be happy to help

Take care x Ted x
 
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aspegirl

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Joined
Nov 19, 2011
Messages
1
#36
Hello Bonica
My first time on here but was hoping you might be able to help.
After ruling out a stroke I was diagnosed with conversion mutism.
I'm looking for a support group in the UK. You mentioned carer watch.
What is this and can it advise. I'm a full time teacher of the deaf so thankfully can sign.
Any advice or pointing me in the right direction would be a relief. I haven't found anyone else with this mutism.
Many thanks
 
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bonica

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Aug 21, 2010
Messages
37
#37
Hi aspegirl.
Sorry to hear you have CD. In answer to your question; they're not a support group. They campaign on disability & carer issues.

Unfortunately there aren't any UK support groups for CD, only online groups such as this one & psychforum.

Regards.

Bonica.
 
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tanya68

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Dec 10, 2011
Messages
1
#38
tanya68

hello, if anyone can help me i will be very much appreciated as I have Conversion Disorder and feel very isolated and every day get a new sypmtom. My body goes as if it is having an epileptic attack but of course its not. Some times it can last for half an hour to an hour but then it can go on for 4 to 5 hours, this is very new to me and the same as people with CD becomes very scarey, I think my husband thinks im going to be well soon as i do and be back to work in a few weeks. My doctor has put me off work for 3 months so now i only get SSP. Now I have to leave the house in a wheel chair as my legs give way. I dont want to loose my independance and at the moment i still have my driving licence but of course theres no way i can drive but am also afraid of not recovering and having it taken away from me. Any advice will be greatly appreciated.
 
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bonica

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Aug 21, 2010
Messages
37
#39
Hello Tanya.

Sorry to hear what you're going through. My son used to have epileptic type fits that lasted for 4 or 5 hours so I understand how scary that can be for you & your hubby.

I'm not well enough to write much tonight but I'll try to answer & I'll PM you as soon as I can.

I know it's easier said than done but just take it one day at a time & try not to worry or focus too much on work, driving & recovery right now.

You're going to have good & bad moments so watch things, do things, read things & listen to things that make you feel good, make you laugh & inspire you. It'll help balance the fear & worry that comes with having CD.

Do what you can when you can & rest when you need to.

Take care Tanya
 
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Twitcher

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Feb 2, 2012
Messages
3
Location
Shropshire!
#40
I'm 21, and i was finally diagnosed with Conversion Disorder when i was 17 and a half after a year and a half's worth of medical investigation. I have what my Neuro-Psychiatrist says is one of the worst examples of conversion disorder he has ever seen. My triggers are usually social and emotional situations that other might not feel stressful at all, and the way it was explained to me by various experts was that my body and brain cannot cope with emotions whether it be happy/sad/angry/annoyed everything. As soon as these emotions start to build up, my conversion disorder kicks in... what i struggle with is that i don't under stand emotions or social situations because something about my CD protects itself from what it sees as 'harmful'. I have 'twitches' that are not localised on my body, i have had my legs taken from under me when walking, i have seizures, i have been a vegetable in a hospital bed paralysed, no speech, no swallowing reflex, and my left arm unusable. I had to have 24 hour nursing because i could do NOTHING for myself, eventually that episode got better but i know with certainty that it will come and go as it wants to. Especially as i twitch daily and life can never be without some emotion :) The one thing i have learnt though is to never give up, evening from my hospital bed i carried on with school, i have made it to university and i am about to graduate, because thankfully my eyes have never been affected. And that is something to be thankful for.

The point i am trying to make is that if i didn't have the DLA, and the limited help i did and do have i wouldn't be where i am today. I am one of the lucky ones where once i got through the god awful NHS GP's and the medical prodding and poking they literally had nothing else to throw at me, they HAD to send me to the best because i was so ill. In a way i'm glad i had the worst because it made them take me seriously. I think anything less and i would have been shoved to the side like so many. And thats what is so sad that those who have terrible symptoms, but that are seen to be less life threatening are being shoved to the side and told to get on with it

@Bonica, i am more than willing to help in anyway i can :)