A short while back Headway posted an outline of a plan to modernize what they do over the next 5 years.
It seems one of the biggest issues people have is applying and appealing benefit claims.
Why don't Headway provide this service to help people going through this?
I don't mean giving advice where people can find help, I mean actually helping people fill in the forms and appealing decisions if applicable.
Headway also supported the campaign that led to the government bill for a 'strategy for ABI' part of that was to make the benefits system functional for people with ABI.
The assessment forms and assessments themselves only have psychological and physiological categories.
Where are the neurological categories.
The real problem people and the assessors (I asked them when I was being assessed) have is that most neurological and sensory processing issues do not fit into psychological and physiological boxes.
The ABI strategy was announced in 2021, but nothing has changed.
What's going on, why are people still being tortured by this process, something should have changed by now and maybe Headway should start finding out what's going on.
Use your voice; do something about it by shouting at politicians and if you want to modernize offer real practical help rather than advice.
I agree, my husband was refused it until we tried again, this time with the help from someone from the Brain Injury Trust in Liverpool. He was great, know exactly what to do, and got it.
Hello! Life just took over really and my own health, obviously. Adopting my daughter, losing family members, moving home, the videos just took a backseat during lockdown and I never got back into it. I really must, you may have prodded the beast...Thanks for asking, means a lot!
Was having a look earlier, 'checking your stats' the DWP posts have the biggest interest.
Have started a prototype channel myself, brain injury related but about how to recover. Fortunately for me I've got most of my life back and it's related to the techniques etc I used on that journey.
I experimented with alternative (to the nhs) neuroplasticity methods that are common in the US and many of them worked.
I even went to uni to do a master's research degree to work out why they worked and I did.
So now I'm trying to share it and maybe others may get motivated to try a few things themselves.
Absolutely- Citizens Advice are v helpful but you spend a lot of time explaining about brain injury (unless you get someone who has some experience of the issues). It would be so much better if you were dealing with someone who started from a position of knowledge.
It might also strengthen any lobbying they’re doing on this.
Does it depend on the limitations of their charter as a charity I wonder PV?
It is frustrating that government processes don't even have a box for us to tick. The DVLA was the same, I don't know if it's been changed yet ( probably not!) I filled out two forms, one for physical health and one for mental health, neither is exactly right of course. More emailing to our MPs I think.
Of course Headway need to be more involved with the Brain Injured at every level.
After 26 years I am now on the mailing list, but only because I made some noise during their review leading up to the new strategy. Had an hour on Zoom with their lady (she has a title but can't remember it) giving my view of what I regard as the local level disaster.
So I got the new 5 year strategy in my inbox - posted here and linked it at the time - and it left me cold. It only included stuff I've been banging on about at our monthly meeting for 4 years. Besides the post here I left it, I mean they know what they're doing don't they!
The last week a mail rolled in which included a link to new guidance on Fatigue after Brain Injury among other stuff (part of the new strategy I guess). The link to this guidance asks the user to download a pdf. I have told them my tablet for example and I'm sure many other's smartphones have limited capacity as do our brains so a link to a web-page would have been better. Whilst writing I also told them the new strategy left me cold and that it appears to me they really don't understand what it is to be brain injured. I have had a very kind response offering hard copy of said guidance and telling me our local Headway coordinator will help with the strategy.
I am not filled with confidence anything much will happen, seems to me the whole thing was done on the back of a matchbox, apparently smoking is bad so nobody had a fag packet handy!
I agree on the pdf thing. They actually asked for input on the fatigue guidance on here and some of us fed in. But their actual website, while full of a lot of helpful info, is really hard to navigate with a BI (as is this forum, tbh!).
Although I don't live in the UK I will put my two cents worth in.
People absolutely need help with all that stuff, because they are not capable of doing it on their own - they have a brain injury - they have gaps.
And, it sounds similar there than here - forms are not designed to deal with people with brain injury. So, you need someone who knows what to put. In my case, I can't tell you how many multi page forms were filled out by my specialist who stuck a line through the works, wrote 'brain injury blah woof' - literally I mean 1 line - and signed, and that was it. The scary part to me is that he retired, and there is no specialist available to people here - so what do they do? Sure, the local bi place helps, and helps a lot. I'd be sunk without them - they filled out a few more things for me. And it was down to things that were like "Is the moon made of cheese on Tuesday?" and the answer was "The dog is on the back porch". That's about how much sense it made to me.
I will also note, and this is the most important bit - so many end up homeless or in dire straights because they can't fill out the paperwork... and they literally are not able to... the social safety net, which let's face it - is pretty minimal as it is - is made completely inaccessible.
So yes, definitely, there need to be people who are trained and also a way for people to get the medical diagnosis they need to be verified, without having to suffer on top of their suffering.
And, insurance companies need straightening out - they delay paying people their claim even after it's been verified. They also push people way too hard and ignore dangerous signs. For example, I know of one young man who had been a truck driver, was in an accident, was having absense periods lasting a couple of minutes - and was told he had to go back to work. He told me if it was just him at risk of being killed when he spaced out, he would go - rather than having to be homeless. But, he knew he was at high risk of killing other people, and he couldn't do that. That kind of thing is just plain wrong, and ought to be in anyone's book.
This got me a bit hot under the collar. Stress is really bad for health in general, and I feel even worse for us because it's already hard enough for us to deal with a reduced ability in life. They know it, and just keep piling it on. It's cruel and inhuman.
Absolutely. Was just reflecting today, when I had a new letter from the DVLA for the first time in about six months, that it's insane how much *administration* there is involved in being disabled - and just when you don't have the stress tolerance, energy or cognitive capacity to deal with it.
As well as Neurological changes there's so much emotion locked in too. Life changes in an instance & if you haven't used benefits system before its very daunting. Awaiting PIP assessment at moment & dreading it. Tried to find some information online from the government to see where ABI strategy had got to but got overwhelmed & didn't find it.
They've only just appointed the panel. first task is to redefine what a brain injury is and the various types within that.
NICE has added a hypopituitary test to the head injury criteria and have identified intensive rehab strategies as the most promising advances (these are all private sector innovations) but NICE, NHS and the mainstream sciences have not done any research in this area.
The DWP know they have to change but this has not happened yet, well the tories did'nt do it so maybe Labour will as it was one of their MP's that brought the bill in the first place. He's now a minister.
I've not gone through this (have considered mobility PIP due to POTS, but not sure I'd be successful) but presumably if they got involved, this should be about concentrating their resources on what they can do in that CAB can't-? Ie helping understanding specific qus about how it relates to BI rather than the actual form filling - I imagine that could easily take up too much of their resource.
Personally I would have found more help from Headway on dealing with the DVLA very helpful, and I imagine that's an issue that affects as many people. Not that it necessarily has to be an either/or. I tried calling them but was given incorrect advice.
I do wonder if they don't do more in this instance though as they aren't legally qualified to advise and can't take on the risk of repercussions if they advised incorrectly.
The lack of local Headway support is frustrating, but I'm not sure if this is actually resourced by them or just volunteers - if the latter, presumably that shouldn't affect resource/budget so much.
I say this well aware that I know nothing about their budget or organisational constraints, and they've generally been an excellent source of support for me - I'm very glad my GP told me to go to them.
Nb I did see they were advertising for a policy and campaigns manager so maybe something that someone on here should go for... (In another life for me perhaps - I'm not yet recovered enough.)
I can see that would be an issue for Headway, though they could provide training for CAB workers, who could in turn have a special designation if they have been trained .
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Neuro-psychology assessment.
Next! (PIP, DWP, and other animals.)
Has Headway finally recognised optometry.
Fatigue management course
