Is chairi malformation a disability? What are my rights in employment? — Scope | Disability forum
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Is chairi malformation a disability? What are my rights in employment?

Skyeboss Member Posts: 2 Listener
edited July 2018 in Work and employment

I have just been diagnosed with chairi malformation type 1, which has left me unable to work. What I was hoping someone might be able to answer, is it considered to be a disability. I believe in the USA it is and is treated more rapidly that what I'm finding with the NHS. Because there is no cure, I don't know what that means long term? My current employers although supportive are getting to the stage where they may have to cancel my contract. Because of ill health, as I have been of work several times this year, plus have had other health problems in the past. I don't know what my rights are in this respect. Can they just sack me. I understand I would have more rights if I had a condition which is classed as a disability. Plus atleast I would have something to fall back on if it meant I couldn't work again in the future, which is looking increasingly more likely. 


  • mikehughescq
    mikehughescq Member Posts: 7,776 Disability Gamechanger
    The starting point is that you have some potential protection under the Equality Act 2010 but you’re not a disabled person under that unless you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

    ‘substantial’ is more than minor or trivial, eg it takes much longer than it usually would to complete a daily task like getting dressed

    ‘long-term’ means 12 months or more, eg a breathing condition that develops as a result of a lung infection. 

    Where this leaves you depends entirely on where your symptoms are at present and the extent to which they impact your day to day activities.

    If you come under thus definition then you have the right to ask your employer for reasonable adjustments. If you have access to a union this would be the mo ENT to talk to them.
  • Skyeboss
    Skyeboss Member Posts: 2 Listener
    Thanks mikehughescq for responding. I was diagnosed with chairi malformation type 1 around febuary of this year, after mri. At present I'm in constant pain, which at times is severe. This pain is in my neck primarily, as well as my shoulders. Especially my right (I'm right handed), at present I'm not sure what triggers it to become worse?
    I also suffer from extremely painful tension headaches. As well as constant pins and needles in my left hand, and I also have no feeling in left arm. The thing that's puzzling the doctors at the moment, is that I occasional have numbness in my face. This again is on the left side.
    Because of my condition I have had 2 extended leaves from work in the space of the last year. August 17 to nearly August of this year. 
    The symptoms have devloped very quickly in this time though. To start with I only had the pins and needles in my hand. This spread to my arm and so on.
    In terms of it stopping me from doing anything. I obviously cannot work, first and foremost. When the pain is at its worst, it is debilitating. I can do very little at these times. Also pain killers have very little effect. I'm currently on tramadol, which I take 2 tablets 4 times a day. However I'll be quick to add it doesn't stop me from dressing etc...
    Because of the nature of the condition however, I will have it until the day I die. There is no cure, and if I have reached the worst of it yet it's enough to stop me working. It's also extremely rare. The Americans believe about 1 in 200-300 people have it. Although I'm not sure if this backed up by over research. Although the NHS ask if they can record your medical notes for the rare conditions and diseases people. The only thing that can be done is to relive the symptoms is to have decompression surgery. Thankfully I go an see a surgeon in Southampton on Thursday. It is however down to the Surgeon if they do surgery or not. Due to risks involved it's a balance between will it give me enough of a difference. If it were up to me however, I would have the surgery given how bad I feel at the moment. Even with the risk of spinal/brain surgery. Given the chance I will express how I feel.
    Thank you again for your help. Hopefully you may be able to gauge where I am from your message.
  • mikehughescq
    mikehughescq Member Posts: 7,776 Disability Gamechanger
    I know a fair bit about chiari because I share one of the main symptoms and I’ve also worked with a couple of people with it where a key part of the work
    was to talk about our significant illnesses. Anything over 1 in 2000 is classified as rare in Europe although such calculations are estimates at best. 

    What you you need to do now is get some solid advice about whether you are disabled under EA 10 and that then gives you some leeway with your employer over things like attendance management trigger points and other reasonable adjustments.


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