I have been on ESA in the support group since my employer, HMRC, yes the government, sacked me for being off sick longer than their rules allowed. I had to attend a medical assessment in October 2017 which caused me so much stress my ms symptoms got worse. Now I have received another capability for work form, three months after my medical which resulted in me still being in the support group. I rang the DWP about this as the government announced at the end of September that people in the support group with chronic health conditions wouldn’t have to be reassessed. I was told that was just a government guideline and their decision maker wanted to reassess me in case of any changes. I wish…my only change will be to get worse. This whole thing has got me so mad and upset at the same time. Has anyone else had a similar thing?
I called the DWP ESA and told them I am now SPMS, they said I was due to have another ESA assessment in Nov this year, my last one was three years ago, but they noted my SPMS and said that this would probably be my last assessment due to my SPMS.
I will keep you all posted on this come Nov. If it proves to be true, there is a really benefit in checking in with your
neurologist to see if you are SPMS.
Check your symptoms: https://www.mstrust.org.uk/a-z/secondary-progressive-ms
Also keep you NHS paper trail up to date for PIP.
It seems crazy if you were only assessed in October to be reassessed again. I’d perhaps phone and make certain this is right since having MS, your condition isn’t likely to have changed in 4 months.
But it does seem that people with progressive MS and little likelihood of working again, are likely to have one last assessment following the September announcement.
I’m just hoping that my WCA in October will be my last.
Meanwhile JulesSeb, assuming you were awarded the full amount for both mobility and daily living, I’d be tempted to just repeat all the information you sent in the Autumn. And send a letter explaining that you had a face to face in October.
If you weren’t awarded the maximum amounts, then look again at the descriptors and see if the assessor got it right. If you think you could have qualified for a higher award, then think about rewording your answers and maybe getting some extra evidence (assuming you have time).
I rang the DWP about the letter and they said the decision makers wanted me reassessing after six months, my forms went in in August 2017 and the face to face was October .
As far as I know I have rrms although spms has been mentioned as I have symptoms all the time now. I am going to speak to the ms nurse next week about it.
I haven’t had my pip assessment yet. That will be more fun to come.
Well at least you can get your MS nurse to write you a new letter. And if SP has been mentioned then you can see what s/he thinks about that. Then again, if you’re on a DMD, and think you may still be likely to have relapses, then being labelled SP will do you no favours.
Don’t forget, that many of us thought we could be SP long before we were. In my case, I thought I might be progressive about 8 or 9 years ago. Then I had a monster relapse that put me in hospital 6 years ago and I’ve not really walked since then.
In my case, I am definitely SP now. But if you’re not sure (or your neurologist isn’t sure) then don’t jump too quickly into that category.
So regardless of whether you are still RR, you can get a new letter from your MS nurse to say that rather than improve since your last change, you’ve deteriorated, assuming that’s the case. That should then be all the extra evidence you need. Although I’d stick everything you sent with your last claim anyway. Just in case the assessor is a total idiot and doesn’t bother to look back a few months!
Well Sue, this is a hot potato - and raises an interesting dilemma:
SPMS + no DMD = no more ESA assessments and a stress free existence.
RRMS + DMD = repeated ESA assessments and constant stress.
I wonder, if the drug companies know about this odd situation??
It could hit their finances, if more MSers argue they are SPMS to avoid the stressful ESA re-assessments, and are
happy to give up their DMDs.
Thinking about it - this could even affect future research - or funding if results are distorted by folk
desperate to end ESA bullying.
Watch this space…
Oh I know. That is a massive dilemma. Because we all know the temptation to think we have moved on and have become progressive. Obviously (you’ll like this one Fay) if we started insisting on using the label ‘Advanced’ then you’d do away with that dilemma. But then you’d have to educate the DWP decision makers, not to mention all the outsourced WCA assessors as to what that means. So possibly impossible. Sue
Yes, that’s another good point about “Advanced” - opening up another kettle of fish.
But it seems ESA is now based upon diagnosis - of SPMS. I can imagine thousands of MSers crashing the NHS appointments system.
I wonder how many people are SPMS, but haven’t bothered to get it diagnosed??
Must be many thousands of people. This could cause chaos.
It mentions here:
“Most people with RRMS will develop secondary progressive MS (SPMS). Around 65% of people with RRMS develop SPMS within 15 years of diagnosis. SPMS is characterised by more persistent or gradually increasing disability. Some people with SPMS may still experience relapses.”
So I filled in my Capability for work form and sent it back. How long would it usually take before hearing back? Am I likely to hear anything if it is rejected?
The answer to the first question is, who knows!! I had my answer within about 2 months. But I wasn’t called for a face to face, so I reckon about a month for the contractor company to do the WCA recommendation, then another month for the DWP to make the decision. But the final decision will take longer if you have a face to face.
The answer to the second question is yes you would. But they wouldn’t just make their decision without a face to face assessment if you were going to be refused ESA on the basis of the WCA. So you should hear something I would say within a couple of months.
I took it to mean that the longer it took for any notification to reach me, the more likely a decision would be made on the paperwork plus evidence supplied. And assuming this was the case, then the decision would be positive. And I think I was right.
Fingers crossed Scudge. I reckon that’s all you can do now. Assuming you are able to that is!
Your case will be interesting, a test case following the government changes to ESA bullying, because you
are PPMSer and unlike to get better or ever be fit for work - so will you automatically be classed as “progressive”
and put in the ESA Support Group without a face to face assessment or further calls for re-assessments?
When I first applied for ESA, I was RRMS and they just did a desktop assessment only by calling my GP and reading my
NHS letters. I was automatically put in the ESA Support Group - so no hassle.
However, I had been RRMS for 15 yrs at that time and I have always suffered from incontinence - which is a passport to the
I think it took 8 weeks to get a decision from the DWP.
I hoping my last ESA assessment will be November now I am fortunately SPMS and have my NHS paperwork to prove it.
Keep us updated.
OMG what a minefield all this is !
I’ve read these threads with interest , basically because I dont have a clue what I am or not entitled to claim.
I do work but know very well that many days I shouldn’t be there, however going to work has always been a “normal” thing for , so I find it very difficult to even phone in sick.
I must point out though that my employer has, and continues to be be fair and understanding.
So I try my best to attend work, full time, I’m on PIP at the enhanced mobility rate. I’ve been on PIP for about 3 years, I’ve never claimed that I cannot look after myself, even though over the last 12 months my MS symptoms are affecting my hands a lot more, so getting dressed or standing still trying to balance is becoming harder, so I guess thats why I dont get the care side of PIP, which I’m ok with, as it’s mainly my mobility that really effects me.
When I first claimed for PIP, and during my assessment I told them exactly what I can or cannot do, no exaggerating or keeping anything back.
So a couple of questions I’m wanting to know is, if I can still get to work at the moment, but need to work less hours, would this ESA thing come into play ?
Can it be claimed if working full time, albeit a bloody hard and stupid struggle.
Is it based on household income/earnings, savings, does it affect PIP ect.
I sometimes think that the Government make it difficult to understand all these different benefits on purpose !
The answer in short is that ESA is paid because you cannot work. So it can’t be paid besides earnings, for that you’d look at Tax Credits. If you were on a low income.
Yep looked at those sites.
I still think the system is made up to be as difficult as possible to access or understand.
a). You are too frail to continue working, but not frail enough to gain enhanced PIP care and ESA Support Group.
b) Your current job is too demanding, I need to reduce my hours, but I can’t get any benefit to top up my earnings.
c) I could change my job to something where I work from home.
d) I could talk to Access to Work.
Yes, it is complex.
Very helpful .
I think there are probably many many people just like me, stuck between situations.
You’ve got a job that is getting more difficult to attend as time goes on, but cannot afford to stop working, then even if you reduce hours you’re might still find yourself outside the earnings income bracket for support from the government.
Then if you just stop altogether you’ll be assessed to see if you really did need to stop working.
My wife, who is an absolute gem and is basically my carer, but as shes also working (part time) she cant claim carers allowance, unless she reduces her hours to less than 16 per week which would obviously then reduce her pay dramatically, but even then if she found herself being able to claim carers allowance the amount possible to claim is far lower than what she had given up to become a full time carer.
She’s also looking after her elderly and ill father who’s living on his own, and also cooking and doing shopping ect for my own elderly father, who again is on his own and recovering from bowel cancer and 3 hip replacements, one of which has left him with an almost unusable left leg.
I looked at some figures on the DOT GOV site and I think a carer can only claim full carers allowance if he/she earned a max of £116 per week and work no more than 16 hours, but could then claim a mx of £62 carers.
Like I say , thats if I’ve worked it out correctly ?
Stress apparently is a big no no for MS, so why the hell dont the Government listen and stop making things so stressful !
Re Carers Allowance, a person can only get it if they spend at least 35 hours per week caring for someone who is in receipt of PIP for Care (aka Daily Living), DLA for Care at the middle or higher rate or Attendance Allowance.
So even if your wife were to stop working and claim Carers Allowance, she wouldn’t qualify on the grounds of caring for you because you don’t get the Care element of PIP. She might qualify for caring for one of your fathers so long as they get Attendance Allowance (I should make sure they both do - the rules for AA are much more straightforward and it’s a lot easier to qualify for) and she must spend 35+ hours caring for that person.
But she couldn’t say she spends 20 hours on one parent, 10 hours on another and 20 hours caring for you. It’s all about caring for one person for at least 35 hours.
So for eg, my husband qualified for it because he cares for me and I get PIP at the enhanced rate for Care. (He’s now 65 so CA stopped because you can’t get State Pension and CA).
The government has a target to get one million sick and disabled into work - this target is creating a total nightmare for us all. For your wife to get Carer’s Allowance you would have to get the Care component of PIP first.
In your father’s case - he should apply to Adult Social Care and get a Personal Budget and Direct Payments for care. Folk over retirement age get Attendance Allowance which could pay her too but not both - either or. But I think you need to get someone in to take over the care of your father. Attendance Allowance - Carers UK
Really you need to switch roles - your wife needs to become the full-time earner and you need to get part-time or change jobs or work from home or give up working! Personally, I struggled for 10 yrs and then gave up.
Perhaps your wife needs to retrain and get a new career path. Especially if you have a mortgage, because Housing Benefit and Council Tax is another nightmare. So too Universal Credit.
If you do both go onto benefits - you could get ESA (hopefully, Support Group) and add her on to your ESA claim and then she could claim - if you have the Care for PIP Carer’s Allowance.
And then you have’ll all the brown envelopes and DWP assessments again… like PIP… like ESA WCA.
I feel dizzy just thinking about it !!