Daughter's Fibromyalgia / ME condition — Scope | Disability forum
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Daughter's Fibromyalgia / ME condition

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JoLIb
JoLIb Community member Posts: 2 Listener
edited April 2019 in PIP, DLA, and AA
My daughter recently moved back home after a failed relationship.  She has for many years suffered with chronic pain.  Since she moved back home I have seen how bad this is.  She lost her Job when her relationship broke up and she had to move away from where she lived to be back with me so she never claimed benefit given she lost her Job via those circumstances (is that right or wrong?) .  She has only just managed to get a job, though this is part time, part time as in short contract, it will only last the Spring / Summer season working in agricultural nursery.  No sooner did she start work thann pain and fatigue kicked in severely . . She looks so ill.. she is exhausted. Luckily her work is literally next door to our home so not far to walk.  Her skin is covered in small yellow bruises , (on her face and area's that are not possible to knock). This comes and goes but again doctors don't give reason, she photographs them as by the time a Doctors appt is available they have faded..  When she gets home from work, she showers then she falls into bed 7pm.  She is on anti-depressants but she now is  continuously  crying from the pain, the painkillers subscribed do no work.  She is now saying she is doomed,, she says she can't work because it exhausts her and causes so much pain.  She is only 20 and her symptoms first appeared around 5 years ago but were intermittent , now they seem constant .. but doctors simply issue anti-depressants.  She has had blood tests... scans / ultrasounds .. some will say Fibromyalgia , some say ME but none offer a way forward.  Her knee is giving way when she walks .. she doesn't sleep and when she does she has vivid nightmares.. She says she think she may have to quit this job as she is letting them down  and is constantly stopping to rest but she desperately wants money for simple things in life.. We are no high earners and budget ourselves but I have had to pay her prescriptions,  feed and do the best I can for her as if she were still a young girl again  ....  I see many mention claiming DLA or PIP.. I have no idea what the difference is?  is there something she can turn to as an income ? if she makes it to the end of summer in this job, should she try for DLA .. or job seekers?.. though I simply don't see how she would travel to any job when she can barely walk .. we are stumbling in the dark and have no idea what to do .. she needs hope.. I worry for her state of mind.. she has self harmed in the past too..  ;( 

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  • CockneyRebel
    CockneyRebel Community member Posts: 5,209 Disability Gamechanger
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    Hi @JoLIb and welcome

    DLA no longer exists for new claimants over the age of 16.
    Your Daughter might be able to claim PIP but this is not an income replacement benefit. PIP is awarded to help with the additional costs associated with disability or illness that affects daily activities and or mobility.


    Be all you can be, make  every day count. Namaste
  • JoLIb
    JoLIb Community member Posts: 2 Listener
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    Hello CockneyRebel..

    Ah , I see.  So when her employment ends I assume she may be able to claim an alternative like job seekers? .  If she were to leave the job because of the pain and exhaustion,  will that label her as not entitled to anything as she has in essence left her job ?   sorry, no idea what I am doing tbh (am I in the wrong area for this discussion) lol.. .  :#
    Maybe PIP is an option... (more research)  but seems it is a fraught battling process.  And to date she has not been diagnosed categorically, only maybe Fibro or maybe ME. I am trying to get my daughter registered with my own doctor .. long process but she only see's locums or registrars who simply shrug and the last stating he simply 'didn't know what to suggest,', , she then came home in total despair . Having been away from home for several years she has no choice on her Doctor and was unable to choose the family Doctor when she returned.  The constant change of Doctor (locums etc)  means no-one gets to know her or her past, indeed they would have no time to read through her large medical file to accurately gauge. 
  • BenefitsTrainingCo
    BenefitsTrainingCo Community member Posts: 2,621 Pioneering
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    Hi JoLlb,

    Your daughter should look at claiming Personall independence payment if she is struggling with daily living or mobility. Have a look at the information on PIP on the Scope website. She can claim this whether she is working or not.

    If she gives up she may be able to claim certain benefit if she can get a doctors fit note. Depending on her national insurance record she may qualify for new style employment and support allowance and/or universal credit.

    If she can’t get a fit note from her doctor she may want to look at new style jobseker’s allowance and/or universal credit.

    Regards,

    Michael
    The Benefits Training Co:

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