THE FULL FACTS

Hello
My husband suffers from Neiman PIck C disease. We are very stressed out about this assessment. My husband is not very articulate in answering questions and I am worried he might fail the assessment.
It is a very rare disease 1 in 150,000 and is genetic and no cure avilable. ASSESSMENT is on 15 dec 2010.

http://www.niemannpick.org.uk/what_is_npd/type_c.html

Any advice will be appreciated.
Main problems arise are below. He is 40 yrs of age and has lost 2 jobs on disciplinary action...unknowing that the problem at work were due to his illness and not stress. He was diagonsed in Nov 2009 only aftre his brother got diagonsed. Hs consultant asked my husband ot get checkedand through biospy unfortunatly he was having same medical condition. He is on Zavesca and he was initially on 6 tablets a day but due to side efefcts helost drastic weight and now his medication has been reduced to half and he is on fat supplemnet. Any help will be appreciated.

1. Eye movement restrictions ( vertical gaze palsy)
2. Shaking/ stiffness
3. Tremor
4. Jerks
5. Coordination problems

I wish you had come to this forum prior to filling in the ESA50 claim form.
The fact your husband has been called in for a medical means they feel he is worth looking at as regards to employment.

ATOS medical centres are purposely set to test the patient. Most DO NOT have on site parking and a walk of over 300yards to building is quite normal. It is also very bad weather at this time of year

If hubby is very ill I would do the following

First of all ring ATOS and tell them hubby is unfit to attend medical. Explain his condition does not enable him to travel outdoors.

At this stage they cannot force him to attend a medical they will ask him or he should ask them to arrange with your doctor for a wheelchair and put your appointment back. Also ask them for ATOS fax number. (You will see the importance of this later on)

Next contact your gp and arrange an appointment immediately. Tell him hubby is unable to attend the interview and whether or not he could cope if he was arranged a wheelchair. If doctor agrees that hubby cannot cope even with a wheelchair ask him to fax your diagnosis, symptoms and problems attending medical.

I presume hubby will be under the care of a hospital specialist or support worker. Contact them and explain to them the situation as you did to your gp and ask them to fax the same information.

If ATOS receives such information about your condition that makes them believe it would be unsafe for you to attend medical they may place you in the support group but will probably arrange a home visit.

Remember they are not supposed to force you to attend a medical if it will worsen a condition or cause pain and suffering.

I hope this helps in someway. Please let me know how you get on.

_________________
IMPORTANT FILES TO HELP UNDERSTAND HOW ESA WORKS
The Full Facts ESA50 Claim form and Guide (pdf download)
This guide is the most important file at site.including what illnesssess do not have to attend a medical
download/file.php?id=66

ESA SUPPORT GROUP CRITERIA
viewtopic.php?f=7&t=321

What to write if you think you should have a home visit
viewtopic.php?f=31&t=620&hilit=home+visit#p1871

Thank you for your advice. The difficulty is that the GP knows his conditiona nd supports our claim but he normally walks slowly to teh surgery for treatment and also has to go to LOndon hospital for reviews with neurology appointment. I am not sure our GP will agree with the hoem assessment and wheel chair. Not usre what to do.. feeling so stuck and down....
I have two young childrena nd thsi moneyw ill mena a lot fr me but dont know how to get through this. Th application was filled in by a DIAL worker...so thought it would be written fine...

Just heard from Pudsey this morning:

Hubby is now is support group.

_________________
IMPORTANT FILES TO HELP UNDERSTAND HOW ESA WORKS
The Full Facts ESA50 Claim form and Guide (pdf download)
This guide is the most important file at site.including what illnesssess do not have to attend a medical
download/file.php?id=66

ESA SUPPORT GROUP CRITERIA
viewtopic.php?f=7&t=321

What to write if you think you should have a home visit
viewtopic.php?f=31&t=620&hilit=home+visit#p1871

Just wanted to express my thank you to this website/resource and all the help i got form here...The esa guide and all resources regarding LIMA ect were very very helpful. We could not have managed to do it without all this help.

Absolute disgrace hubby was called in for medical in first place.
I warn you to be on the watch. ATOS may return in three or 6 months for another medical.

If so, you'll be better prepared...

_________________
IMPORTANT FILES TO HELP UNDERSTAND HOW ESA WORKS
The Full Facts ESA50 Claim form and Guide (pdf download)
This guide is the most important file at site.including what illnesssess do not have to attend a medical
download/file.php?id=66

ESA SUPPORT GROUP CRITERIA
viewtopic.php?f=7&t=321

What to write if you think you should have a home visit
viewtopic.php?f=31&t=620&hilit=home+visit#p1871