Petitioning HEALTH EDUCATION WEST MIDLANDS DR RUSSELL SMITH and 2 others
1 response

we want people with this condition given the same respect, dignity as people with any other condition. research funding , training for NHS staff


 SOME OF THE SYMPTOMS THAT MEN, WOMEN AND CHILDREN HAVE TO COPE WITH BECAUSE OF THESE CONDTION'S ARE:      FUNCTIONAL WEAKNESS,   FUNCTIONAL MOVEMENT ,  NON-EPILEPTIC-SEIZURES ,  FATIGUE, TREMOR'S, LOSS OF SPEECH,  LOSS OF BALANCE, LOSS OF SIGHT,  INCONTINENCE,   DYSTONIC POSTURES, ABSENTEE SEIZURES, DROP SEIZURES, BLACKOUT SEIZURES, AWAKE SEIZURES, SEVERE PAIN. THEY ARE ISOLATED AND LONELY . NOT KNOWING WHO OR WHERE TO TURN FOR HELP AND SUPPORT

FUNCTIONAL  NEUROLOGICAL DISORDER , CONVERSION DISORDER, NON-EPILEPTIC- ATTACK-DISORDER

BROMSGROVE, UNITED KINGDOM

MISSION STATEMENT---- IS TO RAISE AWARENESS TO CONDITIONS,  FND , NEAD , CD , PNES , DYSTONIC POSTURES , TO TRY AND HELP SUFFERS , CARERS , FAMILY AND FRIENDS LINK UP WITH OTHERS WITH THE SAME CONDTION . WHERE EVER THEY ARE IN THE WORLD.

 INFORMATION WHERE YOU CAN GET HELP AND SUPPORT FROM OTHER SUFFERERS

www.neurosymptoms.org            nonepilepticattack.info

                                    www.fndhope.org       

https://soundcloud.com/bmjpodcasts/diagnosing-and-treating-1?in=bmjpodcasts/sets/jnnp                            

                                           podcast with Dr stone and Dr edwards

 

 

Letter to
HEALTH EDUCATION WEST MIDLANDS DR RUSSELL SMITH
HEALTH EDUCATION WEST MIDLANDS PROFESSOR SIMON GREGARY
UNITED KINGDOM GENERAL MEDICAL COUNCIL
We the under signed, sufferer's , carer's ,family and friends feel that there is not enough awareness for the condition mentioned above.

The urgent need for proper care and treatment is a worldwide health and safety risk. The lack of care and effective treatment plans conflict ethically with the moral code of conduct between patient health and the medical community. The lack of knowledge and understanding of these disorders can often leave patients for an extended period of time without a diagnosis, and once a diagnosis is made patients are often treated with contempt. We believe a contributing factor and possible cause is because of inaccurate information and also the lack of research . All too often, it is left to a patient to educate their GP via web sites such as FACEBOOK, www.fndhope.org and www.neurosymptoms.org which are occasionally given out by consultants and/or by a patients own research findings.

We realize there is much debate as to why symptoms not only start, but also continue. However, this does not change the need to find a manner in which patients can remain as pain free and mobile as possible; until a better resolution can be found. Functional symptoms are often very confusing and frustrating not only for patients to feel and verbalize, but also for physicians and researchers for whom are trying to help comprehend and assist. However, we feel a focus in research and with clearer guidelines for both parties involved we may come to a closer place of balance.

We believe with open and honest communication we can find positive resolutions to the issues above.

Thank you,
NEAD/ FND SUFFERER's
Beverley Beckstein