Advice please ... ESA assessment, for my ... - Endometriosis UK

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Advice please ... ESA assessment, for my sciatic nerve and endo

PkxTam profile image
23 Replies

So saturday i have an assessment with Employment Support Allowance, to see wether or not i am eligible to have a little money from the government to help me,

I suffer really bad with my sciatic nerve and especially so after an incident at work, so since then i have not been able to work, as my work environment can be hostile at times, patients are aggressive etc,

Some days i cannot walk, or even shower myself.. which back pain, leg pain, buttocks pain, and also neck pain

As well a flare up of my endo, chronic pain all across my pelvic area, my private areas, cannot stand due to both of these things, i have constant irritation in my central cervial spine, aswell as my lumbar spine, i love on medication for both conditions if thats what i can call it, i physically dont have the energy, as trying to be comfortable is hard work on its own,

I push myself to try an walk daily with my partner an the dog but can only manage 20 mins at a push, an at the end of that i cannot stand on my own because of the intense pain down my side into my buttock and down my leg, i could cry with how it is constant even thou i try push myself and be positive that it will come good

Im soo fed up with it all, and people make you feel like endo is just a bad period aswell! So im stressed over trying to explain everything going on with myself before someone decides if i can have a little money to help, or if im not entitled to it because im not 'ill' or 'bad' enough

Since i left school i have worked in the care sector, and i have suffered with a bad back and back stomach (before i knew what was going on with my sciatic nerve and endo) an ive always seen Musculoskeletal specialists for intense physio and i did until it got worse.. an then id be straight back to work pushing on,

I have had gabapentin and naproxen from the start! Which i was about 18 im now 31 i do my exercises to try and help

My last job terminated my contract due to incapabilty of my job role even thou my back became alot worse after the incident at work!

Im just worried about saturday and trying to explain everything before somebody judges me to decide,

Sorry if i have gone on! i needed to offload a little and im hoping for some advice if there is any :) thank you in advance :)

Hope its a good day for you guys today 🙂

23 Replies
Melon365 profile image
Melon365

Hi PkxTam

I went through the whole benefits systems last year to get help and yeah its a whole different kind of stress.

My advice is to be honest about everything and do not downplay your symptoms at all. They are looking at how it affects your daily life so tell them that you can't shower and that you can't walk. No symptom is too small or insignificant.

Unfortunatly I found that it really depends who you speak to, some people are super uderstanding and sympathetic, others have no idea. I would write a list of everything you want to say to them so you know you are ready. It sucks that we have to fight for financial help as well but it is available.

Good luck! And let me know if you have anymore questions :)

PkxTam profile image
PkxTam in reply to Melon365

hi :)

Thank you soo much for your reply, anand i agree it does suck that we have to battle the system to get a little help

This is adding more stress, and they don't realise that, we have to divulge every last ounce of what were going through to then be judged, i would be working if i could :(

I have started a list and its quite lengthy so i hope i do get given the time to actually speak for them to understand, and i pray that i get somebody who sympathises and tries to understand at least, my mind is full as im trying to write down all what happens when i have a flare up, as well as living with chronic sciatica, my mind has gone blank lol

Thank you soo much for your reply and Thank you :) xx

Dee_EndoUK profile image
Dee_EndoUKModerator

Hi PkxTam

So sorry to hear that you're having a tough time with your endometriosis - we know it can be tough to explain to friends and family exactly what you're going through, so it's lovely to see that Melon365 has reached out with some excellent advice.

Well done on creating a list of all your symptoms and writing down how endometriosis impacts upon your daily life. It's so easy to forget things when you're feeling under pressure, so this will really help you to put your case forward at your assessment.

If you need any additional support before or after your assessment, we do have a free Helpline (0808 808 2227) that is open most days and manned by volunteers who all have personal experience of endometriosis. You can find out the times it is open here: endometriosis-uk.org/helpline

Wishing you all the best - really hope you get the financial support you need x

PkxTam profile image
PkxTam in reply to Dee_EndoUK

Thank you soo much Dee xx

Moon_maiden profile image
Moon_maiden

Hi

Sounds like you have a very good case. I’m currently on UC and claim the extra health payment as well. That’s a battle, 🤦‍♀️

Stand your ground and explain everything as worst case scenario. If it’s face to face take medical documents with you, if it’s over the phone have them to hand so you have consultant info. Either way ask for a copy of the interview, keeps them on their toes if they know you request the info.

Also if your injury was at work see about a claim against them, a contract can’t just be terminated, it’s more lengthy than that, especially with the possibility of disability. Speak to ACAS, it’s a free government service for employment advice and help with bringing employers to task.

Good luck 🙂

PkxTam profile image
PkxTam in reply to Moon_maiden

it is a telephone interview, i will ask for a copy of the interview to be sent to me too, i did not know we could ask for that,

I was off for nearly 12 months before they terminated my contract and they said it was because there was no return date in the near future.. that was january an it ended due to incapabilty to work,

Which is right i wouldnt be able to restrain patients im crisis as i worked in mental health, there was no where safe for me, and yes it was a patient trying to get my keys from me so they could get off the ward.. he literally ragged me from side to side and that went on for a good 10 mins before help came, i battled to get away with me keys but it just made it worst, nobody cared i already suffered with chronic sciatica before this happened, i would be put in positions with people very aggressive and hostile it was always a stressful job and had great impact on me my back and health,

Because i still wanted to go my job the best i could for these patient's but the work place just took an took .. they used my kind heart of going above n beyond for my patients regardless being in constant pain, i wanted to work

I want to work if i could i would i hate not being able to be me and do what i do best, so it royals me that i will be judged like i dont want to work like im lying, because thats how it feels with these assessments explaining every last thing what happens in my life n what i live with.. why cant they just confirm with the notes from hosoital and doctors as they ask for permission to see it all xx

Moon_maiden profile image
Moon_maiden in reply to PkxTam

Hi

It’s awful going through this process, I feel the same in wanting to work, but I wouldn’t employ me!

They should go by medical documents, that’s why we make sure we have them.

Can you have someone with you and the call on speaker? If they know someone is there it helps. I went with someone the other week, definitely made them think.

That’s good if you can get ESA instead of UC, you can still get the extra health payment and apply for PIP.

I still think it’s worth speaking to ACAS, even with the inability to work, it stemmed from work. They’d be best to advise. I thought there was always supposed to be two nursing staff at a time with severe mental health issues so you don’t end up in dangerous situations.

Let us know how you get on 🙂

PkxTam profile image
PkxTam in reply to Moon_maiden

its all done now she didnt even want to know about my endo she said she had more than enough with everything with everything with my back, she also said to apply for a blue badge.. even thou endo or sciatica isnt on the list for it because it affects my upper an lower body.. but i wont do that im hoping within 12 months ill be back working 🤞

In the hospital i worked, when that happened to me all the staff were in the glass office watching and didnt do anything! My 2 friends who i worked with came running frim the lounge because of the emergency alarm, so i am grateful to them

How do you apply for pip? Is it a booklet to fill out everything or the same on the telephone i just had do you know?

Thank you for replying 😊😊 xx

Moon_maiden profile image
Moon_maiden in reply to PkxTam

That’s great news 😀 sounds like it was a nice person.

Thats shocking, there should have been an investigation, reprimands and changes in policy.

To apply there’s a number online, they’ll go through questions and then send you a booklet form to fill in. I went through it with someone else the other week. I’m still debating for me.

PkxTam profile image
PkxTam in reply to Moon_maiden

Thank you fingers crossed 🤞

I agree, private mental health is quite all over the place if im honest, its actually quite sad

You should do it! At least try, i will have a look into it,

I think twice when i see the booklets and how we have to literally explain every last thing 😞 xx

Moon_maiden profile image
Moon_maiden in reply to PkxTam

I’ll probably phone next week for the form.

Hopefully the rest of today has been more relaxing for you 🙂

TheUntamed profile image
TheUntamed

Don’t fall into the trap of minimising your symptoms or saying you can do things on some days. Don’t say you can go for a 20 minute walk or that you have hobbies. Describe what your worst day is like and what you cannot do and especially why you cannot do daily living and work activities.

PkxTam profile image
PkxTam in reply to TheUntamed

Thank you for your reply, i will remember that and explain the worst days,

The walk i push myself to do is intense and painful, i do it because im scared my back wont improve, im scared my anxiety will get worse if i dont step out for a while, its a constant battle, so yeah your right i will not play it down

Thank you soo much xx

BluePillow profile image
BluePillow

I am so sorry to hear about your ongoing endo and sciatic pain. I have suffered from hip, lower back knee and leg pain for the last 10 years. Not as bad as yours, but constant. I recently went to a Thai massage lady who walks on my back and legs. She’s amazing. It’s like she can feel where the pain is. The massage is very hard and frequently painful, but afterwards I feel amazing. She hasn’t cured it but had made such a difference to the pain. I hope if I continue to see her I can significantly reduce my symptoms. Good luck!

Bethleah profile image
Bethleah

have someone with you. This is really important. Emphasis you struggle to walk and need to stop frequently and the pain it causes. This is a key point. If you can’t walk 50m (check if this has changed) then you should get the benefit. Don’t mention hobbies unless specifically asked and tell them you did do … but had to give it up because of the pain etc only say if this is true. If you can’t sit for long stand up rather than be in pain. Also explain how it tires you out. If you do too much does it wipe you out for days afterwards. Focus on really bad days and how it affects you. Do you have good days or just bad days and really bad days? Google it there’s a lot of info on what they are looking for. Assume they want to catch you out by asking the same thing in different ways. Also assume they have targets for number of people they turn down. Plan for the worst and be surprised if it goes in your favour. Also they will watch you how you move etc from the moment you come into view of the assessment centre. How you get in and out of car, up steps, through doors etc. don’t want to frighten you but prepare you, if you don’t get it the appeal. It’s about 80% successful on appeal.

PkxTam profile image
PkxTam in reply to Bethleah

Hi Beth

Thank you for your reply, that is me to a T all that you wrote, and i did focus on my bad days, she had enough info from just how my sciatica is, she didnt want to go into detail about endo jusy wrote i live with that too,

Thank you for taking the time to reply, im now awaiting the yes or no but i shall appeal if i am turned down,

Trust me i would rather be at working picking up a proper wage an actually living my life, i miss my routine my work like and just other people, i cant believe we have to tell it like we have to to get 40 something pound a week, i hate how they percieve people like us who are struggling and suffering, im soo fed it up witj it all without having stuff like this, life is already hard and draining, they dont realise what they do to us :( its wrong really xxx

Bethleah profile image
Bethleah in reply to PkxTam

if you decide to apply for pip or want to appeal contact citizens advice and see their specialist benefits adviser. It’s free and they are familiar with the process. Pip is harder to get than esa. But again on appeal the success rate is 75%+

Rainbow2468 profile image
Rainbow2468

hi as other people have said don't downplay how much pain you are in. Tell them about the worst of it all. Not your good days. I hope it all goes well for you. X

PkxTam profile image
PkxTam in reply to Rainbow2468

Thank you soo much 😊

I did tell them about the bad days and i didnt play it down either, she said she had enough after explaining what its like living with my sciatica daily, but she wrote i also live with endo so fingers crossed 🤞

Thank you again for your reply xx

Catlover3 profile image
Catlover3

Hi. Just be aware that they are not your friend. When they phone they are very subtle and appear concerned but they don't actually care! We have been through this numerous times with my daughter and had to have a Mandatory Reconsideration where she has always been able to turn their assessment around in her favour. She has stage 4 endo, ME/Fibro, POTS, and numerous other conditions. It is very unlikely that she will ever be able to work as she cannot maintain a reasonable level of good health for any length of time. Focus on your worst symptoms and how they affect you on a daily basis. Do not say that you have good days otherwise that will go against you. Good Luck its a horrible situation to be in.x

PkxTam profile image
PkxTam in reply to Catlover3

Thank you soo much for your reply,

Im sorry to hear about your daughter, give her my love please

And your right i didnt play it down and focused on the bad days, she didnt even want to go into how endo affects me she had more than enough for the sciatica so fingers crossed 😊

Thank you, ps i love your name, im a cat love too 🐈 ❤❤❤ xxx

Worth considering perhaps. Endo specifically is aggravated by raised cortisol levels. Raised cortisol feeds higher oestrogen levels. If you are under constantly risky or high stress conditions it could be an additional factor in worsening the endo itself.

PkxTam profile image
PkxTam in reply to BloomingMarvellous

hi,

Ive never read into oestrogen levels, ill have to have a look into it, and cortisol levels,

Thank you for that 😊😊 xxx

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