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If you have Conversion Disorder cheer up there is hope ..........

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telax

Member
Joined
Jun 23, 2009
Messages
14
If you have Conversion Disorder then ask your GP to refer you to:

Neuropsychiatry Outpatients Assessment & Treatment,
The Maudsley Hospital
Outpatient Dept
Denmark Hill
London
SE5 8AZ

If you live in the UK then you are allowed under the referal rules to ask your GP for funding to go there. It is one of only 2 specialist centres in the whole country equiped to diagnose and treat this illness. They are the best place for advice too ......... local Psychiatrists and GPs often do not know much about this illness and regularly give bad advice and bad service. Some even try to say there is nothing wrong, or that it is all a put on for attention. The doctors own behaviour can be very poor when confronted with a patient with Conversion Disorder, some will even be very rude ........ do not be put off and be tough with rude GPs by making a formal complaint to the Practice Manager. Get a GP or Psychiatrst to refer you to those who know about Conversion Disorder at the Maudsley ............... If you have any problems with your GP or Local Psychiatrist not wanting to refer you then go to your local Health Authority PALs liason officer and tell them your GP will not apply for funding for the Maudsley. The PALs Officer should sort it out for you. It can be a long trek and I wish you all luck and I repeat this again If you want to get better then go to the Maudsley they know what they are doing ............ There is hope of a full recovery in the right hands ............. most Conversion Disorder problems can be treated, but it needs the right people to do it! I am sorry I cannot remember the name of the other specialist unit in the country but I'm sure the Maudsley will tell you.
 
Last edited by a moderator:
C

chezz

Member
Joined
Jul 9, 2009
Messages
5
Location
suffolk,england
woohoo

:clap:thanks telex for the info,just wounder why its so hard to get the info you need from the proffessionals,have you actually attended this clinic yourself,hope you dont mind me asking what is your story lol
 
T

telax

Member
Joined
Jun 23, 2009
Messages
14
Hard to find information

Well ... it is difficult to find good quality information for this illness and its treatment especially for Health Workers. When a sufferer is confronted with local health professionals like Social Services, Physiotherapists, Wheel Chair centres, Emergency Home Responce Units they often have a terrible discriminating attitude towards the illness and how it should be managed; a Social Service care officer may work in the back ground to resist providing you with help from Social Services. They may cancel a wheel chair, or an Emergency Responce Unit contract, or a Physio may dismiss your case early without actually telling you what they are doing. You may by just a stroke of luck find out and be able to make a formal complaint to your local authority to scare them off a bit perhapes even pointing out that they are discriminating against you on the grounds of your illness and disability. Often I find Local Authority workers, Nurses, Physios etc will look at the descriptions of Conversion Disorder on line, or some other source and fall into the terrible trap of many of these people and decide its an imagined illness not worthy of their time or resources - possibly even that it is all a put on for some other reason. These health workers often try 'playing doctor' when looking into your case and come to very bad decisions about what is necessary to help some one with a Conversion Disorder. With such a great emphasis on Health Workers being made responsible for their actions and the increase in Legal action against those that make mistakes or discriminate I find those with Conversion Disorder have a little better treatment than back in the early 1980s and doctors generally are less rude, however it is still very sub standard.
 
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carlearac

Member
Joined
Jul 18, 2009
Messages
6
Location
East Midlands
Hi Telax,
I can relate with your experiences of staff not understanding this condition.
Do you know if there is any thing in print that the maudsley
has written as a help sheet for medical staff and patients?
Thanks
C(y)
 
J

jornacam

Member
Joined
Jun 26, 2009
Messages
20
Location
N.E. Scotland
I have had no help regarding this and i can't get to london. Is there a centre like this in Scotland? If there are people who treat this illness why do so many people disregard it? Its very frustrating!
 
J

jaidie82

Member
Joined
Dec 4, 2010
Messages
5
Location
Royston,Herts
Thank you!!! It's a shame that this information is not well known, it really should be.
 
Y

yellowted

Active member
Joined
Jan 23, 2011
Messages
44
Location
UK
has any one been there? i would be interested to hear your experiences as it looks like i may be heading there myself soon
 
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telax

Member
Joined
Jun 23, 2009
Messages
14
My experiences at the Maudsley and some insights into the history of treatment elsewhere

Hi I went there and saw a Neuropsychologist for assessment and I thought he was fine .... strangely insightfull and aware of the problems I was having. He addressed all of my problems and symptoms and gave me reassurance and support for them. It was quite refreshing after such a long time struggling with the health service and other supporting services. I have had 13 GPs and over 32 consultants including 5 Professors (2 were psychiatrists) between 1980 and today and none of them showed much insight into what I was experiencing they seemed not to want to accept the symptoms that did not fit into their picture of the illness. I know I experience them but they just turn a deaf ear to them as if I'm making it up. I can apreciate them having difficulty fitting some of my symptoms into their model of illness however ignoring serious problems I discuss with them is still not on. The symptoms they ignored led to quite dangerous accidents and some nasty injuries. I have been reading quite a bit on Neuropsychology in Scientific American Mind magazine and although it has not covered Conversion Disorder in the last 3 years I am gaining an appreciation on how new the Neuropsychology of various illnesses is and how the training of Psychologists and Psychiatrists maybe rapidly going out of date especially for those who trained prior to 1990. Maybe aiming for the younger Psychologists and Psychiatrists may help those who are having trouble getting quality service. Anyway the best of luck at the Maudsley. If you have funding troubles then give your PALs Liason group (all Health Authorities have them they are called Patient Liason Groups) a call and they should sort out the funding issue. My Health Authority refused to fund the Maudsley at first because they have no arrangement with the Maudsley, however it was finally decided it had to be funded because it was a mandatory funding in the rules that govern these things not discresionary. They funded assessment and inpatient treatment for several months. Hope this helps ........
 
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yellowted

Active member
Joined
Jan 23, 2011
Messages
44
Location
UK
thank you Telax, it helps a lot, did you have your own room or were you on a ward with curtains between the beds? was food brought in ready prepared or could you make your own? were you allowed out to local shops? i ask because i have had really bad experiences of locked wards with sectioned patients, so am panicing badly about going in!!!
 
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telax

Member
Joined
Jun 23, 2009
Messages
14
Difficulties with hospitals

I chose not to stay and just had the assessments. My Consultant described my possible stay in detail. He said just come for a couple of weeks to look if they could do anything for me and then stay longer if I liked. I know where you are coming from though I have had difficult experiences like that as well. Maybe you can just go for the assessment and ask them about details of a possible stay.
 
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davalay

Guest
Been trying to find other centres around the country that specialise in our disorder. Telax knows the Maudsley and I think anyone near London can apply to be assessed there. In Scotland, there is the Douglas Grant Unit in Ayrshire Central that deals in Functional neurological problems, and doesn't make you feel as if you are making up the symptoms or a crack brained loony - they are really interested to understand more about the altered functioning of the CNS and develop personal protocols to overcome the signal breakdown that occurs with the brain. The other place that specialises in Scotland is Jon Stone's team at the Western General in Edinburgh. I don't know how easy it is to be referred to him, but I do know in NHS Scotland, your consultant is able to get you at least one referral outside your area if there is a specialist in another NHS area. I believe there may be a specialised unit in Sheffield - they have produced a few research papers but don't know much more about them or if they are still operating. If anyone else knows it would be good to post the info here.
After going to a number of different specialists, from rheumatology to immunology, I have found the neuropsychiatry team the best help. I am not sure if every NHS Board has one or not but they are trained specifically in these types of disorders. As Telax says, get a younger one or one who is up to date with modern research because just recently things have changed a lot.
Also if anyone knows of any other names this disorder is known by. Yellowted has been diagnosed as Dissociative Motor Disorder, I have been diagnosed as Functional Neurological Disorder and it appears a lot of people who have had this diagnosis for a few years are diagnosed as Conversion Disorder. It would be interesting to see if there are any other names floating around out there.
 
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yellowted

Active member
Joined
Jan 23, 2011
Messages
44
Location
UK
thanks telax,
Davalay, i think there may be a specialist in bath or bristol (i can't remember which but I tried unsuccessfully to contact him a while ago)
 
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bonica

Active member
Joined
Aug 21, 2010
Messages
37
Hi Yelowted.
The "Wolfson Neurorehabilitation Centre" in Wimbledon is part of "St Georges Healthcare NHS Trust" in Tooting & may be worth your while phoning & speaking to someone there.

http://www.stgeorges.nhs.uk/services_wolfson.asp
The Wolfson Neurorehabilitation Centre
Wolfson staff helping old man walk

The Wolfson Neurorehabilitation Centre (located in Wimbledon), is part of the St George's Hospital Regional Neuroscience Centre. The Centre has exceptional staffing and equipment and provides specialist care not available at other hospitals or in the community. It takes referrals from across southwest London and the Home Counties.

The Centre provides specialist neurorehabilitation to patients who require intensive therapy following acquired neurological conditions resulting in physical or psychological disabilities. This includes patients who have had strokes, traumatic injuries to the brain or spine, anoxic brain damage, diseases or infections of the nervous system, and long-term conditions like multiple sclerosis. Services are provided on an inpatient or day patient basis. It also provides a range of assessment and diagnostic clinics and advises on the care of patients who are not accepted to the Centre.

A comprehensive treatment service is provided by multi-disciplinary teams to address patients' needs and maximise their recovery. The teams include nurses, occupational therapists, physiotherapists, social workers, speech and language therapists, medical staff and clinical neuropsychologists. The Unit has consultants in neurology, stroke medicine, rehabilitation medicine, neuropsychiatry and clinical neuropsychology, as well as doctors in training. Visiting clinicians include chiropodists, dieticians and pharmacists.

Also based at the Wolfson is the Chronic Pain Service. The Chronic Pain Service offers a range of medical and non-medical interventions for people living with a range of pain problems including musculoskeletal and neuropathic pain. The multidisciplinary team includes consultant anaesthetists, nurses, physiotherapists, occupational therapists and clinical psychologists, all specialising in chronic pain management.
Our patients

There are 32 inpatient beds and extensive therapy and outpatient areas.

Inpatients are admitted for eight to 12 weeks and follow individually tailored programmes based on goals set by the patient and their family or carers, in collaboration with the treating team. Close liaison is maintained with families, carers and community services, including statutory and voluntary organisations, to help patients' progression from the inpatient setting to the home environment.

Day patient and outpatient services include individual and group cognitive rehabilitation and vocational rehabilitation to get people back to work. Support groups for patients and families are also available
Here's all the contact numbers:

Contact us

Wolfson Neurorehabilitation Centre
Copse Hill
Wimbledon
SW20 0NQ
Fax number: 020 8266 6523

Telephone numbers
Main Reception
020 8266 6544

Patient's telephone
020 8266 6528

Matron
020 8266 6500

Head of Therapies


020 8266 6525

Physiotherapy


020 8266 6550

Occupational Therapy


020 8266 6518

Speech and Language Therapy


020 8266 6533

Social Work


020 8266 6507

Clinical Neuropsychology


020 8266 6505

Nursing
020 8266 6502 - day
020 8266 6517 - evening

Sisters
020 8266 6552

Admissions/Referrals/Discharges
020 8266 6517

Pain Management Programme
020 8266 6545 - Mon and Tue
Wed -Fri answer machine messages picked up regularly

Pain Clinic
020 8266 6577/6524

Outpatients Clinic
020 8266 6515

Outpatient Programmes (WCAP/Vocational)
020 8266 6505

Spasticity and Neurorehabiliation
020 8266 6514

Senior Administrator
020 8266 6516
Hope this helps in your decision making.
 
Y

yellowted

Active member
Joined
Jan 23, 2011
Messages
44
Location
UK
wow thankyou Bonica, that is within my PCT area! I have not heard of that centre before even though i have been assessed at St Georges a couple of years ago, I will certainly raise it with my care coordinator as it will be much more sense to go there as i could do it as an outpatient. Thankyou so much for this valuble info (((((((hugs)))))))) Take care x
 
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