Cauda Equina Syndrome — Scope | Disability forum
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Cauda Equina Syndrome

Rascat0108 Member Posts: 11 Listener
Hello all 

just looking for some general advice as this is all new to me.

so back on Christmas Day 2019 I woke up and my back had completely gone, anyway it took 6 months to finally see a consultant and it was 8 months before I had an MRI. The MRI showed a large prolapse l5 S1, there was no space in the spinal canal either side therefore it was pressing on sciatic nerves both sides hence the excruciating pain.

I continued to work all throughout this time even though some days I could barely take two steps, I have worked solidly since I was 16 and I am 35 now I have never claimed anything before.

I fell pregnant in feb 2019 because of this and the fact the consultant thought the disc might shrink he decided to give me caudal epidural injections rather than perform a dissection.

anyway long story short I had my daughter October  the pain came back with a vengeance 5 trips two doctors 4 trips to a & e and they finally gave me an mri on 8/12, they admitted me and ummed and ahhhed about surgery despite me complaining of red flag symptoms such as numbness in saddle area, bilateral shocks up both legs, pins and needles in feet.

they finally operated on me on the 11/12 but unfortunately it was too late and had left me with cauda equina syndrome.

I am still on maternity leave but in reality I don’t see how I will be getting back to work, my job involved a lot of driving.

unfortunately my right leg is completely paralysed so have to walk using crutch or stick, I have had lots of falls so no longer leave the house. The pain is unbelievable I am on 100mg morphine a day plus tramdol plus diazepam plus amitriplin still the pain is there. I no longer can pee on my own and have to self catheterise 6-8 times daily, I also can’t poop on my own and have to use laxatives and enemas. 

So I applied for universal credit, I am still earning statutory maternity leave £176 pw. 

I also applied for pip and have been awarded standard daily living and high rate mobility.

My partner who worked as a self employed landscaper has had to stop work entirely too look after me and our four month old daughter as some days I can’t even lift her. We also have a four year old who is funded for nursery and a two year who we pay to go to nursery 3 days per week.

i used to earn £65k a year so I am now struggling with the amounts that are coming in at the moment. 

Is there anything else at all I can claim to help me financially?

Sorry it’s so long! 

Any advice very much welcomed 


  • poppy123456
    poppy123456 Member Posts: 24,885 Disability Gamechanger

    I note that you're currently claiming SMP as well as UC, your SMP will reduce the amount of UC that you're entitled to. Your partner can claim the carers element in with your UC payments and this is £160.20 per month.If they don't already claim this then they will need to report the changes on their journal to state that they are caring for you.

    Other than Council tax reduction there's no other benefits that you could claim because UC has replaced all the old benefits.
  • Rascat0108
    Rascat0108 Member Posts: 11 Listener
    Hello Poppy

    ive seen talk on here about a contribution based benefit is this something you know about? 

    Do they look at what you have contributed over the years or something ? 
  • poppy123456
    poppy123456 Member Posts: 24,885 Disability Gamechanger
    New style ESA but claiming this will not make you financially better off because it's deducted £1 for £1 from your UC entitlement.

    May i ask if you're sending in fit notes to start the limited capability for work process off? If you're not then i'd advise you to do this. Once you're assessed if you're given LCWRA then you'll receive an extra £336 per month from the 4th month of your claim starting from when you sent your first fit note.
  • Rascat0108
    Rascat0108 Member Posts: 11 Listener
    Wow! It’s so complex. What is a LCWRA? 
    I haven’t been sending in fit notes to employer because I am currently on maternity leave and don’t have to go back until September . However I have told them all about what’s happened to me I have worked with them for 17 years so have good relationships. They said they are going to send someone from occupational health around to me and go from there? I really feel it’s all a nightmare only month ago I was ‘norma’ living the life and now my four year old son has to roll me out of the bed every morning and after bills despite cutting luxury’s off and down I’m left with nothing for rest of the month within days. It’s terrifying 
  • poppy123456
    poppy123456 Member Posts: 24,885 Disability Gamechanger
    LCWRA is part of the limited capability for work process when you're claiming Universal Credit. See link.

    To start this process you need to send in fit notes for your UC claim.
  • Joanne_Alumni
    Joanne_Alumni Scope alumni Posts: 188 Pioneering
    Hi @Rascat0108,

    I am sorry to hear that you are going through such a tough time.

    It might be worth considering putting in a claim for New Style ESA. While Ppppy is quite right, it will be deducted from any UC, you can keep this if your partner does manage to do some work as it would not be affected by his income.
  • poppy123456
    poppy123456 Member Posts: 24,885 Disability Gamechanger
    It may not be possible to claim New Style ESA while you are still claiming SMP. 


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