Stanley....? Well Malcolm actually ...As that is the name I chose to give my Brain injury. Why I dont know...only that I dont much care for the name Malcolm.
Today I had all of my government assisted funds removed..void,done , finished,deleted....because it seems that Malcolm and I forgot, a form that we dont remember ever having received, which wasnt returned by a said date that we dont remember....When Malcolm and I inquired about form...and date , and what we were to live on and how I was meant to care for my son ..I was told by the civil servant put in place to deal with people like me , with brain injury, " Its the law ,get a job..you seem ok to me"..I really dont know where to turn..In Bucks there is no longer a benefit welfare team due to council cuts...there is no social worker for the brain injured,again cuts..Even our branch of headway is being evicted from its local council building ...HELP !!!! I am finding myself in that dark place again, the same one that says I am more trouble than I am worth. I give up, I just dont have the fight in me anymore...
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Hi, very sad you feel as you do, but no wonder if you've had all your financial help taken away. I've been on a similar journey to you with all the form fillng and having to remember stuff etc.... I went to my local DIAL office and they helped me fight my case with the DWP and eventually I had a positive and in my case correct decision made regarding my finances.
You need help! Can I help, I really don't know?? But If you think I can ask and I'll try.
In the mean time, keep your chin up if you can, but i know its easier said than done take care
i am sorry to hear that and sorry i have no idea what you need to do either
but you are right about social workers for brain injury
i have a social worker now as i need funding to attend headway house, but they wouldn't come out to see me just for my head injury (luckily i am physically disabled too, so used that to get them out) but am still waiting and nothing is happening so i wonder if they will even bother to help me
Thank you Leslie...I need all the help I can get right now...I dont know where to start..who are DIAL...? I didnt fight my way back over the last six years to be feeling like this again...I hate this dark place. I know I look alright..but I hate the way people look at me when I say, "that why they call it the invisible disability"...My children have never claimed carers allowance because they say that its their job to care for their Mum and split the load...although most of my care falls to my youngest who is now just 15 and just started his mock exams...what do these people want from me...?...I am being punished for one of the very reasons that I need the care in the first place.....I forget every thing...but every person I say that to say the same thing.." they have the same problem"....No you dont brain injury isnt about forgetting where you put you keys , forgetting a dentist appointment....I can do those no problem..but I have also flooded my house more than a few times (forgotten bath) set fire to it ...forgetting stuff under the grill....Im not making sense,,I cant even understand myself t the moment.....sorry. Im tired now..really really tired.
Bikerlifestyle......I want David bloody Cameron to spend a day with my son and walk in his shoes....I want him to spend a day with Headway in Aylesbury who are about to lose there building due to cuts handed down from his own hand.....I want a life...not the one I have been handed ( I didnt ask for this brain injury) ..if I had known then what I know now...Given the choice I wouldnt have had the brain surgery.....I wouldnt feel this way , I wouldnt be a burden to my children and my friends.....Drained of all care now....I fight hard enough just to be....I dont have the energy to fight this aswell.
I cant believe they would be so rude and dismissive of a peson, bad manners and not called for. How anyone would know how you are on the other end of a phone is beyond me. Did they offer to send a new form out to you? In future get a pin board and get one of the kids to pin up the forms where you can see them. Mine also get me to do a bit each day as it is too much for me to fill them in in one go. They also fill in reminder dates on the calender to say 2 weeks to get it sent off, remember to post form this week, last day to post form etc. I know it shouldnt fall on the children to do this but it is better than having no money.
I wish i could wave a magic wqnd and put all the cuts away, its so hard to see so many struggle. There is a web site that might be able to help but i think they have a free page and then a more personal service that is about 20 a year. I think it is called benefits and work. There may also be some help on ouchtoo (i think) or just google ouch and see what it throws up.
If there is a young carers centre for the kids they might have someone that can help because it directly affects the kids wellbeing. I hope you can get some help.
You are so right about brain injurys being an invisible disability. It is made all the worse because so few people have any idea how disabling it can be. You obviously have a brillant sense of humor and it is a tragedy that you have been so badly treated.
I have not had cause to use DIAL but looked up their details for you,
"DIAL is an independent network of local disability information and advice services run by and for disabled people. Every year, DIALs help over a quarter of a million disabled people. Scope provides support to the network."
If you have any problem with that the helpline number is 01302 310123
You sound like a wonderful person with wonderful children, I pray that you will soon get the bit of extra support you need to get things straightened out.
I'm so sorry to hear of this situation - the cuts in your area really do seem to have removed a lot of the support that was previously available. You certainly shouldn't have to put up with the comments you describe from the civil servants who are there to help you, this shows a real lack of understanding about brain injury.
DIAL is a great source of support as davesdad says, and the Citizens Advice Bureau can also be very helpful. Our helpline may be able to look for other sources of support locally too, so do get in touch on 0808 800 2244 or helpline@headway.org.uk.
Have you spoken to the team at Headway Aylesbury Vale about this too?
I have spoken to my local headway who have been with me and my children through thick and thin....However they are busy trying to secure a new building for headway and its numbers as our local council (Buckinghamshire ) are kicking us out at the end of the year ...totally lost..I will call the help line ..but I am having trouble speaking to people on the phone as when I and stressed or upset i tend to talk in bullet points...because its how Malcolm projects his self...this has ended up with phones being put down as they feel I am being aggressive.....Rock and a hard place.
I'll let the helpline know to expect your call - just tell them you've posted this on HealthUnlocked and it should save you explaining everything from scratch. Alternatively if you'd like someone to arrange a time to call you, you can send us a private message with your phone number.
I have been on the phone to the benefit agency since 8am this morning and have had the phone hung up on me twice already .I have waited longer in the queue than I have spent time talking to anyone..I have been told to calm down (light the touch paper) I am calm...I cant speak for Malcolm though (Malcolm is the name I gave my brain injury) I sound like I am angry and thats why I carry a headway card...which they cant see over the phone.....Its only 9.30 am and I am shattered already, that will be the brain injury and the stress then ,which effects my speech.....Thank you for your continued help headway, I truly believe that I wouldnt still be here without you and headway Aylesbury.
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Diffuse Axonal Injury
