PIP / ADP for Chronic Migraine?

[greentape]

I think I am going to have to apply for this benefit. I am currently so disabled by chronic migraine and struggling to function. Has anyone applied for Chronic Migraine and if so how did you find the process? Any advise?

I think this is the thing, my neurologist is a nice man but very, very busy and I know they tend to be very resistant at providing these kinds of letters as it could become a fulltime job to them. I don't ever have long with him and my GP isn't really involved with my treatment for migraine as it's all done via the hospital. Even access to my medical records is difficult I'm in Scotland and so unlike English patients I don't have access via the app and I have been met with resistance getting them before.

I am glad you got better help from the Nurses, I do see a migraine nurse so hopefully she will be helpful.

I'm so sorry that happened to you the system is deeply unfair. I was just reading of an individual who was correctly assessed to be awarded PIP at the higher rate as the assessor was being audited themselves that day. At reassessment even though they had no change to their condition they received 0 points. Unsurprisingly the auditor was not being monitored that day. It simply doesn't add up and it seems as if people who do very much qualify are being regularly denied the support they are entitled to. People think many who don't deserve these benefits are easily getting them though lying when the opposite is true, many who truly need them are being denied for spurious reasons.

No I can't drive, would love to be able to learn and tried a few times years ago but my migraine have always put a stop to that wish unfortunately. Yes to all you mentioned. I get though so many pairs of sunglasses as I have to wear them all year round daily and even in doors. There are other aids I'd love like a migraine cap and proper blue light blockers. Even things like supplements to help with the migraines its all so expensive.

I can be more frequent than that and it isn't just during the painful part of the attacks with migraine you can also suffer from prolonged prodrome and postdrome that can be disabling in some ways.

ChatGPT can be useful for this, I'd recommend trying that first to get ideas and the structure and then personalise the information based on your own experience

Send as much additional evidence as you can - testimony from healthcare professionals, GP and hospital records, letters from people that care for/help you, prescriptions, any aids that you have to use to be able to function like a person who doesn't suffer from your condition

I surprised how many people can get PIP when they work, simply because you basically only qualify for help if you can’t dress, feed or care for yourself… yet surely people working must have a certain level of independence? Or at least be able to cut up food and feed themselves?

Is everyone on PIP really needing their food cutting up for them? I’m so confused about it. I did look into it recently as advised by a friend, but having seen the criteria (she had a company help fill in her forms- which I have seen their guidelines for), I think it’s pointless me even trying.

I don’t know how anyone qualifies unless they are essentially housebound and needing full time care.
I came away even more confused and decided not to try claiming.

I found botox completely cured my migrane for several years then it stopped being effective.
Now i am on the monthly injectable CGRP which stops my migraine but I do still have cluster headache.
Hopefully the injections work for you, migraine is so debilitating the treatment gave me my life back.

Thank you.
Sadly yes, I do know of a person receiving both components when they appear to need neither.
When I was assessed I had barely left the house for three years so we focused very much on the mental health aspect for the reconsideration, because they seemingly had no interest whatsoever in anything to do with my migraines during the initial assessment. They concluded that I was capable of "planning and carrying out a journey independently" The paperwork stated that I "spoke calmly and politely throughout and did not sound anxious". When we asked for a reconsideration I told them they cannot tell an agoraphobic person they are capable of carrying out a journey independently. And I asked how an anxious person is supposed to sound. I did not go to appeal, I wasn't in any fit state to do so.

Anyway, I do hope you won't be put off trying. It is definitely worth pushing. Your migraines do sound more frequent and debilitating than mine are currently. Hopefully the outcome will be different for you and you have been given some excellent advice by people on this thread as to how to prepare yourself for the assessment and pushing for more support if you need it.
Good luck and I hope your situation improves. Migraine is such a miserable condition when it robs us of a normal life, and you are definitely at a point where you deserve more help.

There are different levels of pip only about 30% of people are on high rate so it depends what your struggles are i can feed myself so obviously got no points in that section but got points in other sections

Maybe be they a few other things before giving up, as you have not reached last line yet. I know many people where Botox has been very successful

If the consultant at the hospital refuses to write a letter would it be possible to get a copy of your notes under a SAR? They will have documented the severity of your condition.

Try botox my brother has 40 botox injections every 3 months for his severe migraines. It works! The neurologist referred him for them after he tried all sorts of meds and nothing helped.
He tried pip and was denied despite them disabling him he couldnt work for over a year with them.

I have no advice re: PIP but just wanted to offer a word of hope - I also have chronic migraines at 28-30 days per month if untreated and I've also tried the long list of meds (and side effects 🫠) like you describe. I'm now on one of the injectable CGRP blockers and it has been life changing. The first two I tried didn't work very well but then, finally, this one did. I hope you find one that helps - I don't think people realise how disabling chronic migraine can be, or the level of pain you have to live with. Sending solidarity.

Sorry Op I don’t have practical advice other than ensure you speak as tho you’re on your worst day whenever they assess you. We have a habit of going off of best case scenario which isn’t going to get you anywhere with these assessments.

I also just wanted to offer my empathy as it’s absolutely awful to be crippled with migraines like that. I’m a chronic headache sufferer (migraines largely under control now thank god) and that’s bad enough. People often don’t understand if they haven’t lived through it (not that I am saying I have walked in your shoes).

Yes this has always baffled me. A colleague received PIP on the basis of mental health issues affecting her life but worked full time in a job supporting people with mental health issues. It just doesn't add up. I know someone who claims PIP yet works full time in a cleaning job and rides a big heavy motorbike ( this claim is not for mental health ). I just don't understand how so many people in these situations get awarded it yet others who are clearly needing it don't. The assessors do ask about what people's work involves though so presume they take this into consideration.

It may appear baffling to some people, who would not know the whole story, of what the person's life is like. As long as whatever job the person is doing, does not contradict what they are receiving the award for, then they are not doing anything wrong.

I understand that, but the criteria is so rigid for claiming.
For instance, my friend was advised that she needed to say she required specially adapted tools to eat her food and that she requires help with getting dressed and they won’t even consider your claim if you don’t say that kind of thing.
But surely if someone who is that disabled that they can’t button up their clothes or put on their socks, how are they really able to do most (or a lot) of jobs?
Also, they say you write about your worst days, which is understandable, but if someone from the fraud team then gathered evidence of you based on having seen you on your ‘better’ days, would this not go against you?

I have a number of diagnosed conditions. It does impact my day to day life, and sometimes I am too unwell to cook or even eat (or can’t stay awake long enough to do it) but I don’t think I could claim because some days aren’t as bad. If someone stopped me on a better day, I’d be worried that they’d think I was fraudulently claiming. I’m really confused about the whole thing.

I'm not giving up trying treatments but I am applying for benefits at this point.

@Pricelessadvice I think its if you are unable to do those things reliably or repeatedly half the time or more so depending on how often you are affected in this way you could meet the criteria. Whether you or I would get an award is another matter as it seems very hit and miss with many people who do meet the criteria being denied any support. I do understand the fear of being branded a cheat even if you have one day when you can go out, go to the gym and so on. I think one bit of advise would be if you did get any benefit is to tell no one, not your friends, not your neighbours or sister in law and so on. Only the people who have to know like a partner. People can be very funny about benefit claimants and unfortunately people do sometimes get reported for malicious reasons.

I work part time in a clerical role, I have a very supportive manager and colleagues. I organise my work around my symptoms. When I can’t type I dictate using software provided by access to work and I have a special keyboard, mouse and dictaphone to use. I do need help with dressing and I do need help with food but you don’t bring something that you require assistance with to work for lunch. I’m conscious of what I wear because I will need the toilet at some point.
Yes you tell them your worst day but not as if every day or the whole day is like that unless of course it is. You have to be honest. I explained how in a 16 hour day 50% of the time I present normally but the other 50% is when I am severely affected. I’d say it’s 40/60 now as I’ve deteriorated though.

Chronic migraine must be horrific. I get migraines sometimes, unless you have had one you can’t understand that you just cannot move at all - the pain, the vomiting, the light sensitivity. And afterwards it is like a nasty hangover. Having them more than half the time would probably make me suicidal.

I wish you luck OP. You need to be back at your neurologist regularly - take someone to advocate for you if you are too ill to do so. There are drug trials you could be on and that might help.

I get the Scottish one, but its for a number of things, but including chronic migraines, basically when I filled it in, say how often you get them, how they debilitate you for the various questions, which will be about how it affects your daily life, for the scottish one they write to your GP and any other drs you list and you can also upload things like letters and what not.

@greentape I'm not giving up trying treatments but I am applying for benefits at this point

I guess the question is why, when you haven’t tried the additional treatments available that may resolve things. Completely understand if these were tried and failed, but that is not the case.

Sorry what? Didn't you read the massive list of medications and treatments I've tried and failed over the past 20 years? I don't get to decide what I try next, my Neurologist who is a world leading expert in Migraines does. I have tried everything available to me over the years I've lived in Chronic Pain to fix myself there are some things I've not be able to afford privately and I've had to wait for them to be offered to me on the NHS.

"Completely understand if these were tried and failed, but that is not the case"

Try reading the thread next time before in your haste to be unkind, jumping in and saying something and embarrassing yourself!

@graveyhu Thank you, I have decades worth of letters and medications, I probably should have been claiming this years ago and I do attend hospital regularly.