Anyone else feeling so utterly beyond help they really don't know what else to do?

Partner had TBI 3 years ago. Endless health problems. Now deteriorating. Partner had sleep deprived EEG earlier this year. Result was abnormal with an irregular sharp/slow morphology. Coupled with deterioration he should go back on Keppra. We will lose everything. His job, driving license and my sanity. He works in an industry that has strict drug and alcohol policy. Can't face DWP. I know they will tell me he is fine for work. They told him 3 months after coming out of coma he was fine for work but he did not know what day of the week it was.Running out of ideas. Any help welcome.

20 Replies

  • You really need help with dealing with the DWP, please look for someone to help, they told me initially I could go back to work but when I appealed the judge and doctor said I shouldn't have the stress of dealing with these matters, upheld my appeal and recommended I am not assessed again, they are on our side, they are not affiliated to the DWP or government and will look at each case fairly, don't be frightened by them just put your case honestly with as much back up from consultants etc. I don't know the implications of the health issues you raise but seek all the help you can and best wishes Love. Janet xxxxx

  • im awaiting a not nice letter any time scared of mail now 2i no i got advocate cab social worker and my gp is on my side but as you put they dont care about us this is only site made some sorta sense worth look to anyoneid lv to no how they want me to work when just walking no sleep ive forgot your name in 2 secs i can just about type one hand and slow none of us asked for this we didnt go shops did we like now post come i dont want to look scared

  • Just followed the link you've provided for benefitsandwork.........there's a £20 per year subscription fee and if I needed to deal with DWP I would certainly try these people...........looks v.promising.

    Nice one v. x

  • ive joined not paid but its the forms ad bits they tell you like the ?s there mostly trick you no that my sister is a solicitior she poped 2 my house before advocate and cab 1st thing she said was very crafty wordedeven the 1st box looks like should be correct its not your hubby paid in he should get it dont no area your in but have look on net for advocates, they are only 1s dwp seem to allow t test with hubby to wealfair rights have back log 9 months please do search your area get support fro anyone who nos what they can its just upset worry you not need its enough being ill this way its wrong your hubby me and the rest of us ive got very bad head pain again nothing n 1 can do with 3 holes in my headbut worry if i can keep warm live makes me more ill bet hubby worried that will not same as i help sleep that we need and cud help brain heal try advocate wealfair rights , try mind to yes says mental health but its our brains mind and none this heps mental health no dwp leter but bills oh joy hopefully hubby can at some point get bit sleep

  • It's easy to say but a decent company will understand your situation, it's so often they don't and good ones are few and far between, the DWP are a waste of time it would appear, as I too have been classed fit for work and not eligible for any support following a TBI and I'm having a hip operation in 1 week.

    Just when you feel you've tried everything something turns up, stick at it and I hope you get the help you need on here, you can also try Citizens Advice or Welfare Rights through your local council.

  • Our lives have turned upside down and inside out since my husbands TBI 3 years ago, a nightmare time with the DWP as we have always been private people, such an invasion on vunerable people I will never get over it. Keep going back to the doctors and keep all the paperwork of appointments and diagnosis. It is still early days, Hospital told us that there is a long road ahead, we are still plodding along that heavy road.

  • Hello,

    We were in a similar situation about 2 years ago and unfortunately I was unable to save my husband's employment. Our application for DLA was rejected. We are now awaiting a decision regarding PIP. Do you have a Carers Centre in your area? You don't have to be a registered carer to access the support and advice they can offer. They can help you with the DWP and also provide a listening ear for you. I know how much this can sap your energy but try to stay positive.

  • P.S. Just a thought - have you spoken with anyone on the Headway team?

  • God yes...

    But there are ways to get some help...

    1. complain - i complained about Musgrave Park and their lack of due process etc etc...

    2. social worker - do you have one? if not get one, its their job to help - i.e DLA applications, carers, getting benefits etc...

    3. speak to the Doctor, writing down all your points and have them tackle each one...

    4. dont give up......

  • please if you no how to get social worker to help tell me she did me a letter but she says she nos nothing about benifits dwp her letter was corect about health but i stll waiting for nasty letter to come, ive ritten illnesses docs the lot gave it gp but he seems to be just passing it of lightwhich we all no its not by light he said with all thats rong with you if there even ? no 1 will get it so i got social worer nos nothing on dwp and a gp thinks there joking ive got a advocate and cab they were more info to me im scared its like i got no 1 to help realy

  • Hi

    Headway can help , social workers are paid to help , DWP well what can I say just appeal , also citizens advice .

    Keep strong and good luck .

  • its me with the head probs but im so tired yet 2/poos 3 hours if very lucky im in uk no test on sleep here nurse said i need 2 be in bed not been in bed 3 half years lye on sofa to try so i can realy understandyour husband its a nightmare without the sleep no 1 wanta to no and dwp ive had forms im scared to death of i had 2 get a advocate and cab yet to see what they say, you must be worried sick you got enough with hubby ill with out money things i no i had bad fall then 2 weeks after i went out came home almighty pain in head i had a sah left 9 days to suffer till my sister who came up my way ? them had i been scanned ect no next day i was then rushed to brain hospital where id had the sh for 9 days they said i was operated on i came out ok they moved me from high ward within a hour rushed back due to astroke in head dont no whats happened to your hubby but sleep in my case is so hard yet im so tired hes not fit to work if he feels as tired as i do with no sleep the dwp need bums smaked god help me when i get letter, id try them again have read threw this may help you at least a bit at dwp

  • I know it's hard, I had to fill the forms in over time they take so long, but be totally honest on them the important thing is can you do things in a reasonable time scale safely, and repeatedly, I can walk upstairs but not repeatedly and I need a handrail, put it down. I can wash and dress myself in the morning but it takes at least half an hour and I need a rest afterwards cos I'm exhausted put it down, sometimes I need help to dress, put it down. I can make toast and a hot drink but not safely, I burn myself and spill the boiling water from the kettle. They decided I'd be a health and safety risk in the workplace, I wouldn't pass any risk assessment!! Not nice to hear but truthful.

    You have to persevere eventually they'll get the message, don't forget theyre trying to weed out the malingerers, be persistent and seek out the help, I was lucky I have my husband and family to help, plus I'm under no illusions what my limitations are, that was hard to accept, but that's the way it is!!!!

    Good luck, there's loads of help here Janet

  • it has taken me over 7 years now with very little help to find out what I can and cannot do, I just take everything on a hour to hour day to day basis, because I do not know what I am going to be like from on min to the next, so somebody telling me that I can do work would be ignorant of the facts , and that will be the same for all of us, we know our limitations it is trying to get this across to the people concerned if they want to listen and be truthful of course.

  • DIAL....are very helpful and will give you advice on benefits and point you in the right direction. I can't find a link to put here but if you google DIAL you can give them a call. If there isn't one in your area still ring them because they will help. Goodluck

  • thsnks for that information i'll give them a call you take care

  • try your MP that's what they are paid to do ,my MP is very good

  • I went to Welfare Rights, run by our council, and they got me through my court appeal. We won, was awarded DLA indefinitely. The Doc on the panel said it would never have got this far if I had put in that I had an LP Shunt. They never asked! They just wanted symptoms! Still I couldn't have done it without WR. Go to them - and Bonus... It's free!

  • Hi Ditsydoris,

    I am sorry to hear about the concerns over your partner's job. This is certainly something we hear a lot, and we can provide information to help.

    The advice from our members above is excellent as always, so please do investigate those options. You might also find the information on returning to work after brain injury on our website useful. Go to

    It sounds like that are some issues specific to his company that are causing extra concerns here though, so please do contact our helpline on 0808 800 2244 or to talk things through, and they can let you know of any further support services.

    Best wishes,


  • Can't thank you all enough for your help and advice. I am so glad I posted on this site. We see the Neurologist on Monday and I am going to ask her to recommend a social worker for my partner. I just feel very lost. Two kids, three part time jobs, my partner, mortgage and endless expectations that I will cope with it all. But, the other thing I don't feel I can mention is, do I still know my partner? My partner went out on a Saturday night ( was victim of mugging that went wrong ) and came home 5 months later ( Neuro Intensive Care, High Dependancy Unit, hospital wards, Brain Injury Rehabilitation Unit ) But this wasn't my partner who came home. What I got was a seriously deluded man who shouts at the kids. How do I carry on?

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