Fibromyalgia Action UK
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Fighting ESA appeal....exhausted& in pain

Hi,I'm a 55 yr old woman .i was a nurse for 35 years,finally giving up due to sickness from fibro cervical spine is fused c3 to t3 (8 vertebrae) which required 3 ops in all,last one in 2009.( I have degenerative spine disease)

I was placed in the WRAG group following a face-to- face assessment,my application into support group was denied at mandatory consideration.i'm now in the process of putting together an appeal submission.

The CAB can't help me before deadline,so am plowing on with it alone.i scored zero points for am questioning that.but my main hope hinges on 'exceptional circumstances' as I am in constant pain due to my back problems and extreme fatigue due to fibromyalgia. I won't list my symptoms now,as they are too numerous to mention!

All this is making me even more depressed,I've considered giving up,but having come so far,feel I have to battle on plus I need the money! I'm considering paying for help and representation regarding appeal as I can't face it mind is so muddled by it all,I can't sleep or eat properly due to the stress of it all .its all consuming .

Any suggestions great fully received.many thanks.

16 Replies

Im sorry you are going throuh such a difficult time with your ESA It's difficult to get into the support group, especially if you are mobile.

I will just copy and paste a bit below about getting into the support group. I hope it will be helpful for you. Wishing you all the best with your journey!

- Support group descriptors

Qualifying for the support group of employment and support allowance (ESA)is not about scoring points. Instead, if the decision maker accepts that any of the following descriptors apply to you, then you will be placed in the support group.

1. Mobilising unaided by another person with or without a walking stick, manual wheelchair or other aid if such aid can reasonably be used.

Cannot either

(i) mobilise more than 50 metres on level ground without stopping in order to avoid significant discomfort or exhaustion


(ii) repeatedly mobilise 50 metres within a reasonable timescale because of significant discomfort or exhaustion.

2. Transferring from one seated position to another.

Cannot move between one seated position and another seated position located next to one another without receiving physical assistance from another person.

3. Reaching.

Cannot raise either arm as if to put something in the top pocket of a coat or jacket.

4. Picking up and moving or transferring by the use of the upper body and arms (excluding standing, sitting, bending or kneeling and all other activities specified in this Schedule).

Cannot pick up and move a 0.5 litre carton full of liquid.

5. Manual dexterity.

Cannot either:

(a) press a button, such as a telephone keypad or;

(b) turn the pages of a book

with either hand.

6. Making self understood through speaking, writing, typing, or other means normally used.

Cannot convey a simple message, such as the presence of a hazard.

7. Understanding communication by—

(a) verbal means (such as hearing or lip reading) alone,

(b) non-verbal means (such as reading 16 point print or Braille) alone, or

(c) a combination of (a) and (b),

using any aid that is normally, or could reasonably be, used, unaided by another person.

Cannot understand a simple message due to sensory impairment, such as the location of a fire escape.

8. Absence or loss of control whilst conscious leading to extensive evacuation of the bowel and/or bladder, other than enuresis (bed-wetting), despite the wearing or use of any aids or adaptations which are normally, or could reasonably be, worn or used.

At least once a week experiences

(i) loss of control leading to extensive evacuation of the bowel and/or voiding of the bladder; or

(ii) substantial leakage of the contents of a collecting device;

sufficient to require cleaning and a change in clothing.

9. Learning tasks.

(a) Cannot learn how to complete a simple task, such as setting an alarm clock, due to cognitive impairment or mental disorder.

10. Awareness of everyday hazards (such as boiling water or sharp objects).

(a) Reduced awareness of everyday hazards leads to a significant risk of:

(i) injury to self or others; or

(ii) damage to property or possessions,

such that they require supervision for the majority of the time to maintain safety.

11. Initiating and completing personal action (which means planning, organisation, problem solving, prioritising or switching tasks).

Cannot, due to impaired mental function, reliably initiate or complete at least 2 sequential personal actions.

12. Coping with change.

(a) Cannot cope with any change, due to cognitive impairment or mental disorder, to the extent that day to day life cannot be managed.

13. Coping with social engagement due to cognitive impairment or mental disorder.

Engagement in social contact is always precluded due to difficulty relating to others or significant distress experienced by the individual.

14. Appropriateness of behaviour with other people, due to cognitive impairment or mental disorder.

Has, on a daily basis, uncontrollable episodes of aggressive or disinhibited behaviour that would be unreasonable in any workplace.

15. Conveying food or drink to the mouth.

(a) Cannot convey food or drink to the claimant’s own mouth without receiving physical assistance from someone else;

(b) Cannot convey food or drink to the claimant’s own mouth without repeatedly stopping, experiencing breathlessness or severe discomfort;

(c) Cannot convey food or drink to the claimant’s own mouth without receiving regular prompting given by someone else in the claimant’s physical presence; or

(d) Owing to a severe disorder of mood or behaviour, fails to

convey food or drink to the claimant’s own mouth without receiving —

(i) physical assistance from someone else; or

(ii) regular prompting given by someone else in the claimant’s presence.

16. Chewing or swallowing food or drink.

(a) Cannot chew or swallow food or drink;

(b) Cannot chew or swallow food or drink without repeatedly stopping, experiencing breathlessness or severe discomfort;

(c) Cannot chew or swallow food or drink without repeatedly receiving regular prompting given by someone else in the claimant’s presence; or

(d) Owing to a severe disorder of mood or behaviour, fails to—

(i) chew or swallow food or drink; or

(ii) chew or swallow food or drink without regular prompting given by another person in the physical presence of the claimant.


Apart from 1(a) which I've questioned,I've: mobility due to pain & fatigue.

I'm trying to challenge the tribunal on the grounds of exceptional circumstances ... Any tips ?

Many thanks.

1 like

Hi Landon welcome to our wonderful forum ☺ I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you, talking to others at different stages of their lives with Fibro and learning from their experiences.

It does help with the whole process and I wish I had found the site years ago. I have had Fibro for nearly 30 yrs and I'm still learning about it, like we all are.

I'm sorry you are going through all this stress my friend. You can Google disibility advocate in your area to help you or we have our own Benefits Advisor who can help you. Follow this link for her contact details.

I hope you can get some help and get it sorted very soon.

Please do go look at the mother site where you will find all the information you need and lots of useful links on Fibro and I look forward to chatting to you on the forum.

Peace, luv n light

Jan xx


Thankyou fur your advice

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Hi Landon

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.

I am so genuinely sorry to read this and that the CAB cannot help you in time. They do have a selection of reading material and I have pasted you a link below:

I want to sincerely wish you all the best of luck with your ESA appeal, and please take care of yourself my friend.

All my hopes and dreams for you


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Get in touch with a welfare rights officer they are absolutely wonderful

Its a tough road to walk alone on ...they have all the guidance and can even come to your home to help ...the gentleman who i found works privately and only charges a 1 off fee if ur successful ( fee is 3 weeks of benefit ) awarded .

Good luck


Hi Landon

Personally I don't recommend even doing the original application without some sort of support or assistance. I definitely don't recommend going to appeal witout some sort of help.

I would seek assistance from every avenue you can. On top of the other excellent suggestions you have already been given I would suggest you speak to your GP and ask if they have a suitable service that they work in tandem with that can help you. That is how I was put in touch with an organisation that helped me with my application. My surgery has a working relationship with them and refers patients to them that they know are struggling with any of the social care aspects of chronic illness and that includes help with benefits. In our area they are called County Community Projects (CCP). Don't know if they operate in your area but you might have something similar.

Other than that there are some excellent facebook and web sites that offer benefits asssistance and some of them have advisors that can guide you through your particular case. I'll list the ones I know here but there may well be others.

M.E. & Chronic Illness Benefits Advice Group

Please note I haven't personally had to go to appeal and nor have I used all of these organisations but I hope you can find something to help you in there.

Good luck with it all, gentle hugs, 🤗🤗🤗


Thankyou for GP actually sits on tribunals so I'm hoping her letter will be relevant,as she should be clear on the points I've asked her to write in letter.

I've found legal representation now for a one off fee. Am meeting with him tomorrow so he can check and review my appeal submission.he will also represent me at the hearing. Such a weight of my mind ,felt I was going round in circles with it all. I struggle to concerntrate at the best of times.this is harder than getting divorced! My partner is very supportive and also has a legal mind,but due to him working full time it's difficult for him to find the time to assist me .

Thanks again.

1 like

Oh that's good news, I'm glad for you. Fingers crossed for a fruitful meeting tomorrow then. It makes such a difference having good support around you when you suffer from fibro or any other chronic illness.

Good luck, Margaret.xx

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Oh just found this one as well that looks promising.

This is the blurb on the page that tells you about themselves . . .

We are F.A.C.E.

We are here to Fight, Appeal, Challenge Everything!!

This is our intention, our main area of expertise is bedroom tax however we are here to offer other benefits advice and support to people of all ages and needs, and of course help them to fight, appeal and challenge any decisions made in regards to benefits... we will advise you to the best of our abilities, however, we have a network of contacts who we can direct you to who can provide you with information regarding issues we are unable to deal with.

We are a dedicated team of volunteers who can be found at :

MYST (The Old St Lawrence School)

Westminster Road

L4 3TQ


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Similar boat here but didn't serve NHS quite as long, after 2 prolonged periods on the sick with no sign of improvement in my health I finally had to accept dismissal on grounds of capability and lost my job in February and as I haven't come to the end of my 12 weeks termination pay I've not even made my claim yet. I've just got my NHS pension decision through granting early payment of my pension, and as its only based on 16years service its a far cry from my previous salary.

My previous 3mth fit note ran out today and although its a few more weeks before I need to submit my ESA claim my GP has given me a further 6mth fit note (fibromyalgia/stress). Now maybe I am being overly optimistic but at 56 I haven't given up hope that I may be able to return to some form of part time light office work in the foreseeable future but I will no doubt need to undertake some form of retraining to make it happen.

Sad to hear you are having to appeal the ESA decision when you clearly have significant health problems so in regard to your appeal you could try a site called Turn to us, I came across it and although I've not used it yet it seems as though it may be of more use than CAB.

All the best and I hope you have a successful appeal.


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hi, maybe when you are feeling more settled with your wealth of nursing experience you could consider working as a clinical advisor for the 111 service. this is what I do now...I do 3 night shifts a week and earn a decent full time wage. you can do as little as 16 hours a week. I was going crazy sat at home after being deemed incapable of my previous role and felt like I was a non member of society..I hated it. I work for derbyshire health United on the 111 service and have regained my self worth and am once again contributing which sits better with me. my brain still works just fine it's my body that let's me down. good luck with your future endeavours.

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That sounds really satisfying .unfortunately I am no longer on the nursing register and presume I would need to be for the type of job you do.

But it's definately something I would consider,as you say it keeps your brain active but without taking the physical toll.

This ESA& pip malarkey is really getting me down.have just come back from a loverly warm holiday,I felt SO much better away from my phone and post box!

All the very best for the future,good on you for finding work,I hold my hat off to you x


they have health advisor roles non clinical. you do pathways training for 3 weeks then you on telephone triage :) pay is quite good as it's out of hours so.enhancements apply at weekends and evenings. I love working there and they are very supportive of me and my condition. I feel valued and really enjoy my role. the rest of the week I rest and sleep works for me :)

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Am sorry to hear of your situation. Like you I hope,one day,to be able to work again. It seems unlikely at the moment.

I have paid a lawyer a one off fee to deal with my claim& appeal as I was finding the whole thing so bloody stressful!

Am still awaiting a letter from GP explaining my conditions and pointing out a descriptor stating my inability to mobilise more than 50 meters without stopping due to pain and exhaustion.without this I'm unlikely to win my appeal,as being in constant pain doesn't count for anything it seems. Stupid system,as if they left me alone I would be far more likely to recover and do some kind of work.i feel pushed into a corner with nowhere to return,horrible.

Life is so depressing when you've worked hard all your life,then just get thrown on trash heap.nursing is partly what caused all my problems in the first place!

If I were you I would get help submitting your ESA claim to start with, you are far more likely to be put in support group that way,thus avoiding my situation.

Good luck,wishing you all the very best.



The lawyer was very good, he seemed to think I had a good chance of success to get into support group at appeal, he's submitted the appeal for me, am now waiting to hear when tribunal will be. My ESA stops end of May so I will be dependant on my partner for financial support until the appeal, if I win!

I tried to plant some flowers today to. Here myself up. Am now in agony having hurt my back. It's not even relived by tramadol. I had back injections 6 weeks ago- the relief didn't last long! It's just so depressing not being able to do all the things I took for granted a year or so ago.proving what came first, the chicken or the egg re dobro& depression it's a uphill battle with doctors. I'm still waiting for a letter/ report from GP, have to pay for it, wish she'd get on with it! Bed for me now x


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