PIP Frustration, fair warning and withdrawl.


Diagnosed RRMS in September last year. Applied for PIP and went to assessment where I was awarded 4 points daily living and lower rate mobility with 8 points.

I appealed the decision and was rejected by mandatory reconsideration.

I appealed the MR to trbunal. I had my tribunal today. The time process from assessment in November to MR in Febrary and tribunal today in July.

I had a Welfare Officer helping to represent me. We discussed the case at length and there were inconsistencies in the assessment. We both agreed that some went in my favour and many did not. It was not a true reflection of my disabilities, of that much we can be certain.

The tribunal judge was known to my welfare officer from previous encounters and he described him as ‘one of the good guys’.

My rep was called in 10 minutes before the start of the hearing was given fair warning that should we proceed, my current entitlement of lower rate mobility would be at risk, due to the fact that I have no medical supporting evidence.
I was given the opportunity to withdraw my appeal before stepping foot in the tribunal room.

Given that a lenient judge was giving us fair warning, we decided that the lack of medical evidence would go strongly against me and I could end up with nothing, so I withdrew. The welfare officer told me that in all the cases he has been to, no one has walked into a tribunal after having been given fair warning and come out better than they went in. The likelihood was, and is, that if you are given a warning before tribunal, you will likely lose points.

Unfortunately, MS is a chronic autoimmune condition and not one that allows or requires assessments, evaluations or NHS involvement. I meet my neurologist once per year and am on disease modifying drugs - that’s all they can do. Specific relapses can be treated with steroids if they are severe, but other than that I’m left without assistance.
I went to my GP some months ago with pain and MS symptoms and he told me that I should contact my MS team, as he’s not specialised enough. My MS nurse has a case load of 5000 patients and I see her once per 6 months for half an hour to discuss symptoms.

All in all, I do not receive appropriate treatment that would allow medical evidence of my condition and how it affects me. Without the evidence, tribunal are likely to side with the health assessment carried out on behalf of DWP (which, let’s face it, is biased)

The moral of the story is the State is bigger than the person, and the rules are meant to be difficult to save public funds. If you do not have specific and appropriate proof then you are unlikely to succeed.

Also, if you receive fair warning before tribunal - think very carefully of what you risk by walking in to that room.

There seems to be a catch 22 in that DWP want evidential proof of disability. GPs often tell MS patients to speak to their MS team about their problems, as they are not specialised enough. MS teams are overstretched and can’t provide that kind of one-to-one care. My MS nurse has over 500 active caseloads. I emailed her in February and haven’t had a response. I see her once every 6 months for 30 minutes and the majority of that time is doing bloods to ensure no PML risk. I’m on tecfidera. Without evidential proof, I can’t claim my entitlement.

It’s a bias and horrid system.

What utter horseskit! MS doesnt need NHS involvement? If that was true then over half the neuros would be out of work!

Absolutely the wrong decision. But they scared and blackmailed you into backing down. The arsehomes!


Hello db9355

​You were lucky to have someone on your side who both knew the system, was honest with you and knew what was in your application. Problem is that the welfare officer does not know what it is like to live with MS. Anyone working for the NHS is going to be stretched to breaking point and cannot give you the individual time you need to complete the form accurately.

I have found the MS Therapy Centres to be an excellent place where you can get fair and helpful advice. The consultant and probably the MS Nurse tend to look at things from a medical point of view and do not necessarily understand your problems, your quality of life and your needs. They might not even know you very well

Suss out the nearest MS Therapy centres and find one that you like and that likes you. They will help you with day to day problems, physiotherapy, help you with filling in of benefit forms plus a multitude of other problems. MS Therapy Centres understand MS.

The problem is going to the right person for help and assistance.

You never know, you might be lucky and get someone who will make a huge difference.


In all of my many visits to the neuro (well, not that many, given that it’s at most six-monthly, and currently yearly), the post consultation write-up has NEVER mentioned that I suffer either pain or fatigue, despite these being my most debilitating symptoms.

On the contrary, my reports all stress how fantastically well I’m doing - especially for someone diagnosed five years (and we think I’ve had it lots longer).

I do try to count my blessings, as I know consultants see all shades of the spectrum, and I’m sure, in their experience, doing as well as I am after five years is indeed a rarity. However, it doesn’t mean I’m fine. Whilst I’m sure their reports are meant to reassure and encourage me, they would be absolutely useless as far as any benefits claim was concerned, because the picture painted is glowing. Even when we’ve discussed pain and fatigue, it doesn’t seem to feature in the write-up.

It always says things like: “I am extremely encouraged by Tina’s progress to date” (of course, I haven’t actually made any progress, but I suppose what it really means is the disease hasn’t made too much either, which is the best that can be hoped for).

But anyone reading that as support for a benefits claim would be laughing their heads off - the only unanimous agreement is how well I’m doing, and not a mention of pain, or anything I’m struggling with.



This is so true. Those review letters do seem to use as comparator those of the neurologist’s (all too many) MS patients who are in dire straits - neurologists know only too well how bad it can be.

Next time I am having a depressing MS day, I must remember one of those letters and remind myself of how splendidly I am doing - it might perk me up a bit. :slight_smile:



Obviously it does need NHS involvement, but what can they actually do and with what resources?
The MS team at my hospital has a caseload of 5000+ patients and has 3 MS nurses and 4 neurologists. My first and only appointment with a neurologist lasted 25 minutes and was approval for disease modifying drugs only.

My GP told me he can’t provide evidence of disability because he’s not familiar enough with MS.

Rock and hard place.

Had a quick look - my nearest is 36 miles away…

It’s the lack of evidence from appropriate qualified physicians that really goes against someone when they’re claiming benefits

I’m already taking steps to pre-empt the possible loss of DLA when PIP comes calling for me (house is on the market).

I think yesterday’s legislation re: welfare reforms is going to be hell for nearly all of us. We will be all reassessed and be found fit for work - it’s now just a matter of time, not if but when.

We we all need to get used to this new reality.

Time to update our CVs and get job searching.

PIP is supposed to be an allowance for people to maintain their independence, regardless of their employment status.

Personally, I’m a student and do volunteering. It’s not the same as Employment Support Allowance or what was Incapacity Benefit.

It’s unfortunate that the government has so often and drastically changed the law that’s caused these kinds of hardship.