ESA assessment worried about outcome!

Posted , 9 users are following.

Hi all this is my first post,

In January 2017 my mom was diagnosed with fibromyalgia and was claiming job seekers at the time within months of being diagnosed she deteriorated very quickly and it was heartbreaking to watch, she went from being able to cook, wash, dress herself to not being able to do any of these things and by may 2017 she was in so much pain that I needed to leave university to look after her full time in May she was referred to pain management which were still waiting for her to be seen and the GP have her a sick note so in may 2017 she applied for ESA and was awarded the assessment rate and since may she has been on ESA. In may she also applied for PIP , she had her assessment in august and in September was told she'd failed her PIP assessment we didn't appeal as my mom is in to much pain she just couldn't be bothered with having to go to court ect as it was too much for her, then in November we noticed her memory was going she would forget that the stove was on and has burnt a lot of pans and on more than one occasion I have come home and the kitchen is full of smoke and the smoke alarm going off and my mom in bits not knowing what's going on, she's also gone out to go shopping in town as she has for years and has forgotten were she's going or were she is and has gotten lost in more than one occasion so after telling the doctor all of this mom has been sent to a memory clinic to find out what's wrong as she said we need to rule out dementia but she said that memory problems can be another symptom of fibromyalgia called brain fog it mimics dementia and we both agreed mom can't be left on her own at all for her own safety as well as others. I have been my moms full time carer since May, I wash her, dress her, wash her hair, help her to sit and stand, cook all her meals , help her on and off the toilet ect. I also go everywhere she has to go like shopping in town, hospital appointment ect.

In December 2017 we got a letter for moms ESA assessment for January 9th 2018, then on Jan the 9th we went for the assessment , I helped her sit in the waiting room as she can't sit down unaided as the pain that runs through her arms. After about 10mins she was starting to become in to much pain and starting to stiffen up so I helped her up and she walked around the waiting room the with my help sat down again, not long after that we were called through the HCP took us through the to the room I help mom sit down and then he asked about moms fibromyalgia and mom was in to much pain by this point that she didn't really answer many questions so got all his info from me as mom could not even look at him she was in that much pain he only asked a few questions and I told him all the above of what I do for her, I also told him mom can't even sit through a film and that I have to pause it several times because of her pain, then I gave him a support letter from moms GP the GP said the same as me in her letter that mom depends on me for daily care like washing and dressing and that mom is in constant pain all over, she also mentions in the letter about moms memory and her getting lost and burning things by forgetting there on. Then after reading the letter he asked about medication and about memory and then said he is going to take photocopy of the GP letter and mom prescriptions then when he came back he said he can see mom is in a lot of pain and that he has all the evidence he needs. We were only there 20mins and was shocked at how quick it was and are worried now.

Now nearly four weeks later we still have not heard the outcome yet and were getting more and more worried what the outcome will be as we're living off moms ESA as being a full time carer I can't look for work as there's no one who would look after mom she depends on me. And has she failed to get pup I can't claim carers allowance. So if mom fails to get ESA we don't know what to do.

I have read on other forms that a short assessment normally is a good thing? I'm really worried as if she fails were in a UC area and with all the horror stories of universal credit were worried we will loose our house.

With mom failing her pip were worried that she will fail her ESA , mom was on ESA years ago as she also suffers with Arthritis and she failed that assessment years ago so she's failed tow assessment. Mind you the ESA assessment from a few years ago she didn't have fibromyalgia or memory problems and didn't rely on me. And I'm not sure weather she could face appealing as we won't have the money for it and with how bad her fibromyalgia is she get exhausted from the pain so im not sure if she could physically go through an appeal. Any advice will be welcome as every time the post comes to the door were scared out of our minds.

1 like, 22 replies

22 Replies

  • Posted


    Dear Sarah, I don't know much about ESA and PIP, how ever my advice is to stick with it, it is a good job that your poor mum has you to care for her.  I become so angry when I read reports like your's, whatever you do, keep at them.

    Good Luck 


    • Posted

      Thank you for your reply, it's just so heartbreaking to see mom like this but I love looking after her as we have a very close bond and I'm young (23) so can go back to uni in the future but right now my mom needs me , I just wish the government and DWP would understand that we and others who are like my mom are already stressed with the health issues and life changing consequences of the conditions and don't need the extra pressure of worrying about money and rent ect.

  • Posted

    Sarah ask for your mums b12 levels to be checked. The symptoms of b12 defiency is much like fibro but b12 also has memory loss and mimicking altezimers/ dementia. 

    I have both fibro and b12 ( and hypothyroidism just for the hell of it)  I have b12 injections every 8 weeks and I know when I’m due, don’t take no for an answer a lot of drs don’t understand it, I was told to eat more chicken when I first got tested ( at my request) we have since discovered every family member has it ( apparently rare until it hit our family!) you’re born with 11 years worth in your system then the body replenishes, ours don’t. My son at 13 had his tested and refused the injections until a consultant told him he would end up in a wheelchair and without a clue. 

    It’s possibly just the fibro but for a simple blood test get b12 ruled out x 

    • Posted

      Thanks when we see the Dr again we'll ask, she has just had blood tests done and I don't think b12 was check I know she had a full blood count, anti bodies checked, a few different protein tests , kidney tests , muscle enzymes tested and vitamin D and everything except the vitamin D came back normal, moms on vitamin D supplements at the moment and she did a fibromyalgia score sheet thing with mom and mom scored really high as having fibromyalgia as I also have fibromyalgia I had my b12 tested before I was diagnosed so I definitely have fibromyalgia but I am lucky that I only have it mild, and a few members in our family have it so I think it's in our family DNA. Mom definitely has fibromyalgia but we're going to see if she can get her b12 checked. Just worried about the outcome of ESA at the moment.

    • Posted

      Forgot to say that when she was diagnosed last year her vitamin D levels were normal they only became a little low since having fibromyalgia.
    • Posted

      Hi, yes they don’t check b12 routinely as it’s quite rare. 

      We have fibro in our family too, along with IBS and thyroid and lupus  they all seem to go together. 

      Good luck with the ESA. Fibro is better understood now than it was when I got diagnosed years ago and told it was all in my head! 

    • Posted

      I got diagnosed years ago too it was the rheumatologist who sent me for my b12 blood test as the GP hadn't tested but my levels were normal along with a long list of other blood tests so he is 100% certain I have fibro. The only other condition that nearly every member of our family has is tinnitus and I'm the latest member to get it and am waiting to see a ENT specialist. My started with a cold then when the cold went I still have my tinnitus so that why my Dr sent me to see ENT.

    • Posted

      I have that too! But because of severe asthma,  vocal cord disorder, and  sinnonasual disease I have to do sinus wash twice daily and had a horrible bout of vertigo last year couldn’t drive even. Had ear ache ever since. 

      Oh to have a normal working body! 😳 I’ve just come out of hospital after my 4th emergency asthma admission in 10 months . I’m still waiting on DLA to PIP - I bet the day I go is a good day 🙄🙄

    • Posted

      I know my Dr thinks I'm mad but I hate tinnitus worser than fibro as I can live with fibro but I hate tinnitus it drives me mad trying to go to sleep and all I can hear is this traffic noise in both my ears, iv always suffered since I was a kid with congestion issues but my nightmare started from a cold last year and once my cold had gone the Dr and I were hoping it would clear up so after a few months it was still there she did a blood test to see if I was deficient in anything as being low in minireals or vitamins can cause but no all fine she checked my thyroid but that was normal too, then we tried my diet by eliminating things that are know to cause tinnitus but after months still there I tried everything me and the Dr could think of but with no joy and she couldn't understand why I still had it as my ears looked normal and clear, I also don't go to concerts or cinemas very often last time I went to a concert was over 9yrs ago and cinema 3yrs ago so she said it can't be noise related as I also don't wear earphones and don't listen to music offerned either so she agreed it was a mystery as to why I still have it so said I needed further investigation that was back in April last year my appointment at the hospital keeps getting cancelled and rearranged , suppose to be seen in 2weeks hopefully.

    • Posted

      I’m sure there was some kind of bug going around last year so many people had ear issues after a bug! 

      Hope things improve for you and your mum x 

  • Posted

    Hi Sarah don't worry too much about the assessment being 20 minutes mine was 8 minutes and was put in support group if your mum doesn't get it or support group she really should appeal if she really can't cope going in person ask for a paper based appeal and send all the evidence in that she has I hope it goes well for her

    • Posted

      Thank you I hope she pass's too, mom is happy to go in either group as long as she can stay on ESA.

  • Posted

    dear sarah so sorry too hear of your mums condition ,and i know its frustrating waiting too hear the outcome of a claim,a tribuneral is not a court room your not under oath or in a dock ,try and contact a citizens advice burea and ask if someone could give you a home visit too disguss benefits that you could apply for you and your mum.i had similar problems with my mum until she died ,she recieved attendance allowance so try and speak too someone good luck


  • Posted

    Hi everyone

    I just wanted to update you, we got the brown evenalope today and it was her decsion, it says that she has been put into the support group and is awarded this until January next year , she will now be getting £125.55 a week, we are so thrilled that we no longer have to stress and I can focus on carding for mom. She phoned them up to check and they said yes your claim has been updated and your in the support group and don't need to send sick notes now and that she has also been paid back pay so I went to see for her and she has a large payment for back pay? I'm just so happy we don't have to worry now. Thank you to everyone who help us, also she got axletree today from the memory clinic and has an appointment in march so today has been a good day.

    • Posted

      Thank you, we are so happy to finally be more relaxed and look forward to the future and mom is also going to have her b12 checked.
    • Posted

      Hi Denise

      Just wanted to ask if she doesn't hear by Jan next year (they said her award is from Jan 2018-2019) will her payment stop after that date if she doesn't hear from them about assessment or forms?

    • Posted

      Or will they continue even after that date until she's assessed?

    • Posted

      It will continue. Lots of people go way over the time they say. I really wouldn't worry about it yet. Tell her to start to gather some evidence a couple of months before that date, just so she has everything ready.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.