My ESA has been stopped after medical assessment. Should I appeal?

[JoJo2106]

Hi (Apologies if this is a bit long but really need some help/advice)

I have been on ESA benefit for quite a while now, I have had numerous problems with my health for the last few years and been unable to work. I had breast cancer a few years ago (lumpectomy, mastectomy, chemotherapy etc) recovered slowly after this horrible time in my life. Then about a year or 2 after this I developed endometriosis and adenomyosis which was diagnosed during a laparoscopy. Unfortunately I can't have treatment for this the way they would treat it normally with trying various hormone treatments as my breast cancer was positive for hormones so not allowed anything for the rest of my life containing hormones. I have suffered a great deal of pain with this for quite a while now and it rules my life. I have had surgery a couple of times to try and excise it but still been left in pain. I very very unexpectedly fell pregnant at the end of 2016 and had my little boy Sept 2017. He is a real miracle baby as due to all my health issues he really by rights shouldn't be here buy somehow he is smile.

My endometriosis returned a while after giving birth and am still in a lot of pain with it. And a lot of the time I do need help from my mum as I'm in a great deal of pain an struggle to do things or sometimes even move.

Anyway I have been exactly the same and nothing has changed in my condition at all in fact it's slightly worse since I've had my son. But I attended a medical assessment for my ESA last month and the man who done this was not nice at all. He wouldn't really let me elaborate on anything to explain how my condition affects my life on a daily basis. He seemed to think he knew more than my gynaecologist who is a specialist in his field. Told me my medication I take wasnt good enough and "isnt really a painkiller" even though this has been prescribed by my gynae? I came away very frustrated. I had a phone call on Wednesday to tell me the decision, the man on the phone basically told me I had been awarded ZERO points at my assessment (you need 15 to be on ESA). How can I be awarded 0 points when my condition is still the same if not worse now? I was also told the assessor had ignored a lot of stuff I had tried to say, changed things I had said and also said I got up onto the couch to be examined. This didn't happen and I wasn't examined.

The man on the phone then asked if there was anything I disagreed with so obviously I told him the things I've just explained above. He said give me an hour I will phone you back with the decision. Phoned me back and he then said he had awarded me 9 points as the assessor seemed to have missed that part. Bearing in mind I was awarded 0 points by been seen in person then all of a sudden I am awarded 9 points over the phone? I needed 15 points to stay on ESA so am 6 short so they have stopped my ESA now.

I would just like to know if this mockery of an assessment and the fact I've gone from 0-9 points just over the phone is good grounds to appeal this decision? I am getting a written letter from my gynecologist am also something from mental health team as I suffer with anxiety and depression also. I am now on my own with a 2 year old with barely any money 9 weeks before Christmas and dont really know what to do. How likely Is it I could win my appeal if I do appeal this.

Thanks so much for reading x

I would call the EndometriosisUK helpline. They deal with this a lot. (You can find the number on their website.)

If you are a line parent with a child under 5 you could switch to Income Support? You could still pursue the esa appeal/claim again in future but at least you’d have an income in the meantime.

*lone parent

@LittleLongDog thank you I will look into that. Feel like I have a fight on my hands now, I just can't believe it tbh

Appeal by all means, you have nothing to lose. However, you may not win. It would seem that the criteria for receiving the benefit seems to have become more strict, hence the possible decision made? I would start looking for a job asap. TBH, I know a couple of women who have debilitating endo, but both are able to work full time with appropriate pain medication. Perhaps you could manage a part time job?
The breast cancer issue is just awful, but is really a red herring if you are now cured.

@WeeM think it's all been switched to Universal credit now hasn't it? So confused about where to turn. Perhaps citizens advice may help?

TBH, I know a couple of women who have debilitating endo, but both are able to work full time with appropriate pain medication.

^ This kind of ‘I know a woman with endo...’ talk is so so so unhelpful. It affects women differently - one person’s pain is not the same as another. Just because you know two women with endometriosis who are able to work full time does not necessarily mean that there is a job OP could manage with her pain/medication at the moment.

yes you should appeal- I don't know about ESA but a lot of PIP decisions get overturned on appeal, you need to find a local organisation who specialises in that for support
CAB may help - or know who is best placed to
good luck

@JoJo2106 I would skip citizens advice and go straight to the job centre. Citizens advice are going to tell you to go on the ‘What am I entitled to’ gov pages online and then send you to the job centre.

Oh yeah I forgot about that-it’s being introduced gradually so I’m not sure now...
www.gov.uk/income-support

But yeah citizens advice or the gov.uk website are usually good.

@Soontobe60 I'm waiting to go onto hospital for surgery so will be laid up for a while after that. But tbh the pain is just constant I often cant even put on my own socks and shoes or change my sons nappy. Without my mums help I'd be lost. I have adenomyosis too which is basically endometriosis inside the womb aswell as outside. I bleed heavily twice a month and the pain is excruciating at this time. Even painkillers don't touch it

@LittleLongDog this is the problem. My pain is really bad, I know a girl with it myself but it affects her differently. I also can't be treated for it either. My gynae said they usually try various options before surgery. As in the contraceptive pill or a coil etc. Surgery is usually the very last thing they try but its my only option. But yes it affects everyone so differently.

@StillWeRise thanks I am definitely going to look into this further I think we have a benefit advice service locally so will try them and see if they can help.

Absolutely appeal. Gather all the evidence you can.

Go to benefitsandwork.co.uk. They do really good guides to help you fill in the forms properly.

The code for 20% off annual membership is 27489 before midnight tonight (so £16 instead of £20). I have just joined again because I got my motherflipping PIP form the other day. Have a look at the website at least.

Other than that, contact CAB.

Get supporting letters from any medical, mental health people. Also letters from friends who know you well can help too.

Good luck. It’s so shit isn’t it, sorry you’re going through this.

The guides cover ESA and PIP and other stuff too.

They help you dig out all the right details you need for each question. I’ve used them a few times now.

It’s so exhausting this stuff!

Yes appeal . The rates of appeals been upheld was astronomically high when I last read about it .

You should definitely appeal.

If you continue to get sick notes from your GP and submit them to ESA you can get the assessment rate paid whilst you are waiting for your appeal to be heard.

I was told that the CAB have a special team that help you fill out the PIP form (for free - isn’t it shit that that website wants £16 from someone on a low income??!) and EndoUK will also help you fill out the PIP form for free.

I work for Citizens advice (a large local office) and we are very good - we have benefit specialists who work on appeals. I have heard mixed reports about Citizens advice on mumsnet and I suspect that's because the local offices will vary, will different levels of resources and experience. However, it is always worth contacting/visiting them. If you visit take your ESA decision letter and any medical evidence that you have.

My advice is that you should definitely challenge the decision. The first step is a mandatory reconsideration, which is pretty straightforward - you need to send a CRMR1 form and enclose medical evidence if you can. Unfortunately the MR success rates are pretty low (although you might be lucky). If you are unsuccessful at MR stage you would then appeal at a tribunal. This involves a lot of paperwork and takes a long time. So if you can get help with it from Citizens advice or another organisation, I would advise you to get it.

Anyway, here's detailed advice on the first step, Mandatory Reconsideration:
www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/employment-and-support-allowance/while-youre-getting-esa/challenging-an-esa-decision/

Lastly, one important thing to consider - are you renting and getting Housing Benefit atm? If so you should contact your local council to tell them your ESA has been stopped but you are challenging it. You will need to ask them to continue paying your HB and will probably need to prove that you still qualify (eg provide bank statements as proof that you have no other income).

Another thought. Are you claiming PIP? From what you've said about your condition and the fact that your mum helps you, it sounds as if you might be eligible.
See www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/before-claiming/check-you-are-eligible/
And www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-self-test

If you are eligible you can start a claim pretty easily by calling the helpline. You will then be sent a long form to complete (and will have a month to complete and return it). If you're gathering evidence for ESA you could use it for a PIP claim too (the criteria are slightly different but medical evidence will still be useful for both). You will then have an assessment. So it won't be for a while, but if and when you get PIP, the payments will be backdated to the date of your phone call to start the claim.

@AnotherEmma ah really? That's good to know that CAB can help as I'm out of my depth with all of this. I don't even know what to write so this will be a big help. I did read somewhere that the success rates aren't great for a mandatory reconsideration. Scary thought going to an actual appeal. When you say it takes a long time how long are we talking would it be months? I'm unsure what to do in the meantime, someone said to me I should apply for universal credit but if I do that what would happen if they did reinstate my ESA? Or do I just try and live on what I get now and wait to see the outcome of appeal. So confused as to what to do lol

Yes I am renting and currently get housing benefit. I have been in and told them all about it today so at least I'm.one step ahead. I am yet to receive my letter from ESA as yet as I was only told the decision on Wednesday over the phone so I guess it's on it's way.

I am also getting something in writing off my gynae and have records from mental health team. I only have one month to appeal this decision so need to get it all in motion asap.

Yes, it is worth appealing! Here is some information about payments you can receive while doing so; unfortunately, the first step is to request a Mandatory Consideration and you won't be paid during that period. Putting in a claim for UC at this point to cover your living costs is possible but needs careful thought, because once you're on it, you can't go back to ESA even if you win your appeal. If the DWP don't change their mind, you can be paid ESA while awaiting the tribunal.

www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/employment-and-support-allowance/while-youre-getting-esa/esa-money-and-benefits-during-reconsideration/

Do you know how you qualified last time? It is actually possible to be awarded ESA without scoring any points in some circumstances, but if you have previously amassed 15+ points, do you know which descriptors you met? That will definitely help you construct a good case if things remain the same, as you say. Not being able to work because of extreme pain isn't actually covered by any of the descriptors, somehow. Do you receive PIP? Because what you said about needing help to get dressed some days suggests that could be worth looking at, if other areas of daily living are similarly affected.

@AnotherEmma no I don't claim PIP. I think that's really hard to get is it not? Surely if they've stopped my ESA they wont even consider me for that?

@flourella thank you, yes I am hesitant to claim UC as yet until I get some advice. Just noticed you say if the dwp dont change their minds I can be paid ESA while I await tribunal? How does that work because I assumed that was all my payments stopped as of now?

I'm not too sure on what I got the points on last time if I'm honest. Was pretty shocked to be awarded zero this time though, especially to then be awarded 9 during a phone call

I don't claim PIP no, I assumed that was really hard to get unless you were disabled?

As I said, the criteria are different. But I don't think PIP is necessarily harder to get than ESA. For both, you have to go through the same rigorous assessment process (complete a long form and then have a face to face assessment). People get turned down for both and we help them with MRs and appeals. If you came to my Citizens Advice, we would assess your case before advising whether it's worth doing an MR (although you don't have much to lose by doing that) and then appeal.

I assume you are also getting Child Tax Credits? Provided you can manage on CTC and your HB is continued, I would advise you not to claim
Universal Credit. During the Mandatory Reconsideration phase, you will not get ESA, but after you have received the decision (your letter will say Mandatory Reconsideration Notice) you can log your appeal ASAP and as soon as you've done that, you will get some money (I think it's the lowest rate of ESA, £73.10/week) while you go through the appeal process. It can take months.

The reason I advise you not to claim UC (unless absolutely necessary ie because you can't manage without your ESA income for a few months) is slightly long winded to explain, so bear with me... I think you may well be entitled to PIP, and if you are, you should claim ASAP. If you get PIP, you will be entitled to a "top up" of ESA called the Severe Disability Premium. This means that if you get PIP and you manage to also get your ESA back, you will be significantly better off than if you just claim Universal Credit now.

If you are not likely to be eligible for PIP, there is less at stake and you could just claim Universal Credit now. However, there is a 5 week wait for the first payment (you can request an advance payment to tide you over - this is a loan you will need to pay back). If you claim UC, your CTC will stop straight away and your HB will continue for 2 weeks.