This is my job. I am an Acquired Brain Injury Coordinator. I support, advise and signpost all matters that can help, if you or a loved one has experienced an Acquired Brain Injury. I make those 20 phone calls that you don't have to. I do the research and present it to you. I make appointments that others find difficult.
Do acquired brain Injury patients need this help?
What help and advise do you need? Do the doctors and health care professionals provide the help and advise, or do you need a person there to hold your hand while talking to said professionals?
This isn't an advertisement and I am not touting for business as I work for a non profit charity.
I want to put the question out there.........What do you need?
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abico
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Hi, all of the above would be useful, I hate making phone calls, visiting the doctor etc., anything that requires multi- tasking, interacting with people who don't know me. I've had to make an appointment at the Drs for 7.50am so that my husband can accompany me.
I have to prepare for this type of thing days in advance so I dont forget anything, it's exhausting.
For people with no support it would be invaluable, for those with working cares it would help too.
Hi Kirk5w7, It is so difficult to try and hold on to information. Have you tried mobile apps to help you? Maybe use the record button to record conversations that you can play back. (with the other persons permission of course) :0)
I could not have managed without my ABI coordinator.
She saw what I couldnt, saw the things that I was struggling with that I was just not able to. They sorted out my banking issues, I kept giving money away, forgetting my PIN numbers etc.
They helped me with the benefits merry go round. With shopping for something other than cheese!!
Planning and organising socialising all the things that were beyond me. Motivating me to go to swim and taking me, going to gym as part of rehab, helping with appointments when I couldnt remember what I wanted to say or what they had said.
Getting help for my children, advocates and school parent partnership services, young carers. I think they managed to stop my children being so bewildered as to what was happening.
Invaluable service although I did feel very abandoned when they stepped back. I was quite angry. I didn't understand that it was due to my being capable and not needing so much input. They never close your case and you can call at any time to ask for help with something if you need it.
Want to know were you were 5 years ago? Myself and my partner, someone filling your role, in June 2008! I don't want to diminish the excellent job that the NHS and Headway do, but my wife could certainly have valued your type of roll. I no longer have any crisis moments, swings of inexplicable mood or behaviour. We have survived, but great to hear about your role, which part of world do you operate in?
Thank you for your response. I am based in Southampton, Hampshire. But with the help of skype I can be aware. lol Hopefully the NHS or other organisations will recognise it as a specific role and endorse it.
If you don't mind me asking, how did you overcome your 'Mood swings'? it must have been quite a challenge for you.
Nothing specific, they seem to have reduced as my general mental health has improved. It may be simplistic but me managing to rationalise and deal with them, has allowed me to get things in perspective, and, on most occasions, keep myself on an even keel. It has been a slow process, but having my partner point out when I am being unreasonable has helped; particularly now I actually accept, and realise she is often write. At first I was paranoid and used to get angry and assume she was getting at me. No wonder 75% of TBI survivors end up sepperating from their partners! Chat again?
Definitely need assistance, suffering from severe concussion. Bike accident happened on 11th Feb, struggling to do daily tasks, off work at the moment, studying MSc part-time. So any help much appreciated.
Oh wow! Hi Lizzie. 11th Feb is a very short space of time. Please make sure you rest and you make your doctor/specialist know of any difficulties you are experiencing.
Is there any specific things you struggle with? Cognitive or is it more psychical tasks?
It is both cognitive and physical tasks, so daily tasks are challenging and make me very tired. Doctor knows the difficulties i am experiencing but it seems i am educating everyone around me in regards to concussion and brain injury which is also tiring and frustrating. I know more than my GP at this point i think. Saw a concussion specialist, who took me through SCAT3 protocol, but i need a neuropathologist, physical rehab, really struggling to sleep which is not helping my brain heal. Takes me time to compose emails and spelling is bad!
Hi, need help with mobile phone, insurance, banking/fees, home phone and internet contracts, electricity, council tax, online stuff (some), what PC to buy and how to make it SECURE = for banking etc., advocate who'll BACK ME UP and push for REAL answers and ACTION. Sometimes can do phone calls other times not.
All ABI stuff says use notebooks and write things down: I TRY to but MEGA muddle and usually/often can't find who I saw when and what for/purpose, absolute CHAOS = all my contacts, papers, and clothes half in boxes, mostly.
Trying to register car and they kept reg. doc. and if stopped here must produce it. PLUS: my insurance runs out 10th, got max no claims, don't get new number til AFTER expired = think I'll lose ALL my no claims and will be treated like a new driver = MEGA expensive = SO unfair. Unsure. Thought I'd get given new reg. number today but NO idea how it works. Should've paid the £600 was quoted if kept my UK reg. and pay ins. here. NO idea, keep being told different things and no idea what's TRUE = unsurprisingly.
Was told (yet again) to 'have confidence/believe' that the admin will do as should,no choice but feel VERY scared coz don't understand what/why was told to do: EXHAUSTED, back and both feet and neck REALLY bad, shouldn't have had to do it = should be simple, easy and close to where I live OR by post FAST, sick of delay and people NOT doing what they SAY they will = a promise. Can't rely on myself to do things properly and so many others seem to find it 'fun' to do stupid stuff, break, 'lose' & wreck my things. It hurts SO bad.
Need ONE person absolutely trustworthy who helps me with stuff can't do/too hard to understand. It's BIG responsibility and most care workers are WAY underpaid (£9 or £10ph and think (?) not paid travel = AWFUL) and not trained for us and ABI. Help make my home fit me: storage, kitchen, need help choose simple easy cooker that does what I want/need. Help with INSTRUCTIONS = SO hard now!!! And getting the TV to work and somewhere comfy would be nice. And a mattress/bed that is RIGHT for me: I know I'll always hurt in bed but the least possible would be great.
Need expert help to find a home that fits me where I can be safe, secure, free to live my life, be the best I can be, ENSURE trades do their jobs properly and not break more things. Help me get a REAL doctor who does their job properly and REAL follow-up and CARE, compassion and knowledge of ABI.
And someone to know whether I'm dead or alive, fallen on stairs and cracked my head open, very ill (as in xmas 2012 and out of my head with fever and not eating just in bed in & out of consciousness and NOBODY knew or cared). Sometimes somebody to drive me (taxi? But there when finished what gone to do, come with me?) because sometimes SO tired and feel not safe to drive, especially if I ever (very very rare at me) go out in the evening.
All this stuff is what friends/families normally help with if there are any and if they're able to. But when you lose all those you used to be very close to and love = there's nobody and we all need somebody. In the past where I lived neighbours all helped each other out, some became real friends (I thought). Now I have nobody at all, no partner, no close friends can ask to help, NOBODY, SO lonely. And losing contact with my son has broken my heart.
A BIG ask from an ABI co-ordinator: more like an assistant I need? HATE not being able to do everything, try so hard but fail. Don't really want strangers in my home but unless VERY local = no choice and anyway need help/support/protection for trades if they must come to my home, so hate that" noise, tiring, chat, can't sleep if need, STRESS and FEAR: lone old (ish) women = SCARY. HATE having to lose my privacy, lost it all I think, NOTHING private any more, feelsSO bad.
But tried for 9 months get appropriate help I need and still NONE = feel SO bad.
In France now but got NO help england and same here. Really struggling, NOT coping but try to and try to look like I am coz when plead for help/try explain I just get dumped and passed on. SICK of it so have given up = broken. No fight left. Feel VERY ill and suicidal often. Guts BAD and twitcheswith stress and overload. Feel very ill and abandonned by ALL.
And cleaning? I used to do more than now (since my ABI) but my back/neck SO bad now plus fell and injured right shoulder/arm = hurts SO much to do stuff like hoovering, on knees wiping floor. But that's not ABI co-ord job! And TECH: am SO left behind, would (maybe) like a smart phone/tablet but daren't buy because think won't know how to use, can't even use my most BASIC old phone properly. ?
Can I make a suggestion please? Something I think is essential especially if anyone who has had ANY head injury has ever had more than one gp. Make sure that the full medical history is available and checked for anything that may impact on recovery..eg dislocated compression fracture in the spine.
I like your suggestion.But I triedSO hard to get my GP to question the radiology reports for me = coz docs refuse to answer MY questions on their reports.
I KNOW my neck hurts really bad, I KNOW it's lost more muscle on right but docs 'examine' and say not,me wrong, but I KNOW I'm not but nobody BELIEVES me coz not a doc = HURTS to have my knowledge/truth denied. = denying reality, MY reality.
You: if anyone who has had ANY head injury has ever had more than one gp. Make sure that the full medical history is available...
But only I (ME) know most of it = more than anyone else but docs don't BELIEVE me and write stuff down wrong and lies about me and send them to others, HURTS ME BAD = they KNOW. Tried for YEARS to be listened to and believed but think FAILED coz STILL no info I need, my story, my names for what I have so can explain to myself and others.
you: and checked for anything that may impact on recovery..eg dislocated compression fracture in the spine.
I just know my lumbar & back (higher up = in back since 'osteopaths injured it where not injured before) and neck and near heart and guts and right foot and both big toe joints (sometimes hips) and aching right thigh and especially right eye all HURT and KNOW injured. But nobody believes me or tells me what xrays, CT, MRIs etc. SHOW. I can only guess and I guess wrong and NO idea if/how much images (all?) been fiddled with so can't ask Qs about images I've been given and PC been hacked too. So can ANYONE rely on images when SO easy to fiddle with/fake? Judges would = believe whatever experts told them. No proof for anything, I think?
How many times keep trying/asking, triedDIY but can't. = STUCK/BLOCKED = UNLESS get BIG help for ME = can't. And there lies despair and hopelessness coz at mercy of others and they got no mercy or heart = I think?
Who's brave enough to blow the whistle and stand up for MY right to know?
= HELP ME?
All turn away, look at the floor, go red but dare not speak or act.
How do I get the help of a brain injury co ordinator? I had a brain aneurysm 18 months ago and have to pay someone to come each 3 weeks to help with my paperwork and banking and insurance etc, cos I can't see it thru any more, as well as get friends to travel with me if I need public transport to hospitals and appointments etc because my mind just shuts down under stress and I can't think where I am. I have to pay their fares too as it isn't their bill! As I live one on just an old age pension as I can't now work I am really struggling financially too. Can you help me with what ho could be available please?
I am sooooo delighted to read your post, I thought I had imagined you. I cannot get answers from GP health centre, different docs all the time. I am having a particularly difficult time at the moment as number of symptoms have increased in severity and there are a few new ones. I became afraid and made my way to my doc, dismissive of me and seems unaware of any brain injury issues, the pains and tremors and the burning skin sensations all over my body, to name but a few. I am suffering as are so many. this doc smiled at me and told me to go home and smoke some 'wacky baccy'. I am devastated, I just want someone who knows to recognize any of my symptoms as being related to my brain injury, then I can cope. I am just afraid that if doc ignores everything I say and trivializes everything I say, then something that I might be able to get help with will be missed. Their attitude makes me more anxious and afraid, not less. They keep saying 'need to get that anxiety under control' 'need to get that blood-pressure under control'. I am so distraught most of the time because of a lack of basic care.
OMG, just seen this post and replies today 29/7/17 so thought it worth recirculating for any newbies. Is abico still in circulation and are there now, 2 years on, more knowledgable and helpful co-ordinators from my post earlier today, you'll have gathered Im not impressed with either my carer or social worker.
Keeping paperwork in order and to hand, especially for NHS appointments, is my biggest concern, followed by the need for physical practical help indoors! Despite having 2 sons, I still have 50% of boxes not yet unpacked from move back to UK last Oct. some stuff I'll need/want to keep, though once seen, much I can probably donate to local charity shops, given lack of space in my new rental home.
I don't know the neighbours well, although they all say if I need help just call them. I'm not sure what kind of help they mean though! I do ask the lads next door to unscrew tight jar lids for me - my own proper openers being in an unpacked box!
Brain injury gets mentioned more often in the media for different reasons these days - but most 'social/medical care professionals' really don't seem to have any better comprehension of the difficulties we have in processing our own thoughts or information given to us.
I can so relate to many of the replies on here because yes it's what I went through abroad and since my return here - that's why I urge people to have confidence and faith in their own understanding/knowledge of their own physical health and needs- post B I. I've become so assertive now through necessity and just verbally push and push the professionals.
I've told them before, but without Headway and this forum I would be much less recovered than I am today - still a long way to go, but I'm getting there slowly - with aid of mobility scooter and walking stick, so at least I can get out and about and do my own shopping now.
Developing a social life is next on Agenda - yes friends also virtually deserted me. Starting from scratch means new people see the scooter not the brain injury or other health issues! I'm also Trying to get into some new purpose built "over 55's assisted living" communal apartments- but that needs support from my Social worker, who is not being co-operative at present! Next Wednesday I'll be 70, he's been treating me as though I'm old and senile!
Our physical and mental ages are different I still feel as though I'm in my 40'sand just wish it was my HUMOUR and variety of conversation they noticed not my age on paper!
Definitely!! You and what you are offering would be a golden light for so many - patients & families. I speak from my own experience and I would like to hope that things have changed since my SAH in 2008. My emergency treatment & hospital care was 2nd to none, but the moment I was discharged it was like stepping into a black hole!! There was no support, advice or information available...we had to search for it ourselves. It was a scary & worrying time for myself & my wonderful family. Having someone to answer those seemingly 'little' questions, someone to contact on those dark days, having someone to guide & reassure us would have made a huge difference, without doubt.I did seek and find help through the group "behind the gray" and followed them for a few years, until I eventually felt secure with the 'new' me and can't thank them enough for being there. However, why is this not widely available or common knowledge?
So back to your question....I can't imagine you being short of requests for help and I thank you for being such a caring, considerate individual, maybe we could clone you & place you in every brain injury unit in the country?! All the best to you and those who come to you 😊
All would help me., weve been left to dry even when paramedics voiced this when needing emergency care
Husband discharged 31st march 2020, DOLS took off 2hrs prior to me collecting due to poor safety and low staff, police found husband. I was told daily phones calls from BI Team, along with 3-4 visits per week. We had nothing for 10wks. In those 10wks I did refuse residential care, I didnt want to give up. June came regular visits until beginning of December. This year 2021 3 meetings, just told hes not safe for BI OT yet this was 3weeks ago.
I have no family,no friends juggling 3yr old but traumatised with daunting report on her development, I have 15yr old just finished school. I work full time, juggling full time caring. I'm on week 2 training son on caring role.
My husband was under clinical research with Southmead and referral done for hormone therapy, as continuous blood counts no different to when discharged.
BI team book day, time but dont turn up. Since being on life support husband throat damaged many scars and with low immune system makes him more fatigued and ill to the point 6th time this week had to get medication from GP. Still suffers badly with fatigue, stroke like symptoms and just starting to manage behaviour on my own 15mths, yet hes not safe to even start accessing community with BI OT.
Totally on my own. Think 3wks ago referral to local Headway, I'm so low and reached limit I've had to reach out, I've tried everything how to cope best to my ability now dont know what to do. I even started Twitter this week to recognize what organisation out there, I've never done social media I'm 38. This forum has been on only support for 13months.
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Myself and my partner, someone filling your role, in June 2008! I don't want to diminish the excellent job that the NHS and Headway do, but my wife could certainly have valued your type of roll. I no longer have any crisis moments, swings of inexplicable mood or behaviour. We have survived, but great to hear about your role, which part of world do you operate in? 
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