Benefits UK

Hello all,
With MAV often being so debilitating at times, I wonder if anyone in the UK (or anywhere else) has managed to attain ‘permanent’ benefits from the government, in the same way as one might if one had MS or the like? Similar to MS, MAV waxes and wanes, so I wonder if anyone has gone on permanent ‘sick’ and been able to convince the SS/Atos etc that MAV is a viable proposition for disability?
All the best, Anthony

1 Like

Migraine is classed as a disability under the Equal Pay Act so in theory it should be possible. Pretty difficult I would imagine as, in the dim n distant days before Brexit and then Covid ‘cancelled’ the existence of any other News apparently I recall much ado about all disability claims suddenly being subject to reassessment under stricter controls by more officious assessors. I remember reading years ago a duration of six months was one criteria. Few on here wouldn’t qualify on that score I suspect. I do remember going through this once before with a couple of forum members and I did discover the Migraine Trust were running an. Advocatory service.

My husband and I have had to go to tribunal 3 times over the past couple of years for ESA and PIP. Sadly the current system is set up in a way that it is a nightmare to get the points needed to access benefits with conditions like this, and I have yet to hear of someone getting “permanent” status (even my uncle who was a paraplegic and would never change had to be reassessed every so many years).

That being said it isn’t impossible. We won all 3 tribunals, but it was a very long process (20 months for my PIP and I had to write to my MP to get them to push for my case to be seen after such a long wait). And it is incredibly stressful, so be prepared for the impact of that.

I have multiple health conditions including chronic migraines and have been pretty much house bound and mostly bed ridden for the past 2 years and I still had to fight so hard for just the basic daily living and didn’t get the mobility aspect despite having joints that regularly pop out of place. As I say, the system does not work in our favour. Even though I got put in the ESA Support Group (meaning I was too sick to work) I was turned down for PIP twice before getting to the tribunal stage (I was too ill to appeal the first time around).

What I have learned is this:

Get a guide from somewhere like Benefits and Work to help you understand the terminology and the best way to phrase things in order to be awarded the points you should be getting.

With a condition that can differ from day to day they are supposed to take into account how you are on most days, but often if you tell them that they don’t believe you. So you have to be really clear about how many bad days you have and just how bad they can be.

As dehumanising as it is, you have to tell them things like being unable to shower or make food for yourself etc on bad days. And you must tell them how unstable you are if you have dizziness and vertigo.

We often learn to compensate in our lives but that can lead us to put on a brave face. That does not help you in trying to access benefits.

The assessor will pick and choose what to write (I had fallen in the bathroom the day before my assessment and had a huge bruise on my arm but my assessor wrote I showed no signs of instability!) Try to have photo evidence of things like this to send any time you fill in a form and it gives you the option to.

Someone who has never even met you will make the decision based on what the assessor wrote. The system is massively flawed and if O remember correctly it is now over 70% of all appeals that get awarded in the end. But getting to that point is long and stressful as I say.

So in answer to your question, it is possible to access benefits but you have to really fight for it. I don’t know how easy it is with migraines because as I say I have multiple diagnoses and even with all of those I still struggled. But you are entitled to financial help and it is worth the battle if you need the support.

I hope this helps in some way and isn’t too soon and gloom. I’ve just had my fill of battles with the DWP and wouldn’t wish the system on anyone who is suffering. Good luck if you decide to try for it!


Hi Amandochka,
Thanks for this very full reply. Says it all really. Sounds like you’ve had a terrible struggle. Makes anyone think twice.
From others, not even with MAV, I know all the struggles with DWP and their agents. They exist to put people off.
Thanks again for this great food for thought.

Thanks as always for your reply. Lots to think about. Anthony :slight_smile:

1 Like

So sorry to read how hard you have had to struggle for what is your legal entitlement. Thx on behalf of this site for recording your struggles. It’s such sharing that makes this site so helpful to sufferers and gives them the strength they need. Knowledge is power indeed. Helen