I would like to know what sort of support people received after TBI, as I received none. No-one has ever visited my house to see how I manage, I’ve not had any occupational therapy to help cope with my difficulties, I even had to find out about and make contact with Headway myself. My partner has been amazing but he shoukdn’t be expected to do it all.
Support after TBI: I would like to know what sort of... - Headway
Support after TBI
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ftt1960
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Hi, My experiences go back nearly 24 years. Initially I received no help. I was encouraged to discharge myself from hospital as I was in their words " a difficult patient ".
I left hospital incoherant unable to walk with a paralysis on my left side. My wife was told I hadn't had a stroke and things would settle. I didn't sleep due to nightmares an was very aggressive.
Luckily my gp was not satisfied with my position and pushed for tests and treatment . This took over a year to get .
A counsellor told me of headway about 2 years in. She was surprised I hadn't had direct treatment for my head injury.
I must admit the firs 2 years of recovery are a little vague and I rely on my wife to clarify events.
Without my wife and gp pushing I dread to think where I would be.
Pax
There is none in my health authority. Friends helped me and the internet especially youtube provided the understanding of what a TBI is, forums like this one helps by realizing most people are in the same boat no matter what kind of brain injury they have.
A friend of mine with no qualifications recently got a job in a rehab ward for stroke patients. He says they only treat the most severe and as soon as they can eat, communicate and go to the toilet they are booted out for their families to deal with.
He describes it as tick box rehab because no one including himself, he admits, has a clue what their actually doing.
It seems most health authorities have insufficient staff & funding to provide follow-up after an initial 3 month review. Ask your GP for a referral back to your original neuro team for reassessment.
You'd probably have a long wait for an appointment, especially since the strikes but, after an 11 month wait, I got to see an amazing neuro-consultant who organised periodic MRIs, endocrinology, ENT & optometry testing, along with his personal support and medication monitoring.
It's disheartening coping alone with the after-effects of brain injury isn't it Ftt but, once the referral is in, it's a comfort knowing help is out there...
Cat x
I had to wait 15 months after dscharge before I got a neuro follow-up appointment despite contacting my surgeon to describe the issues I was having, including daily headaches. I am now awaiting an appointment for intra-cranial pressure testing to confirm whether ir not I need a shunt. I have been diagnosed with hydrocehalus which was missed by my GP despite several symptoms that indicated this. My GP surgery is fairly crap.
my partner has never even had a follow up appt with a consultant after hospital stay. We saw a specialist nurse who wanted to sign us off after one appt. GP not interested. We have access to the specialist nurse but we have to initiate it. My argument is that my partner can’t always recognise he needs help
oh dear, the systemis verydefinitely broken. Good luck getting the helpyou need. If I find a method I will post about it.
I totally understand your frustrations & concerns, I too experienced the same....no support or advice once I left the hospital!!It is a scary position, I found a site "beyond the gray" that was invaluable to me in providing information & the support of others.
My GP was very good & did refer me to the neuro team for monitoring.....I did require a stent 18 months later!
Keep insisting on help, but ultimately we are on our own to find it. All the best in your continued recovery & we are the lucky ones xxx
Thank you for your response. I will definitely have a look at Beyond the Gray. Unlike you though, my GPs are rubbish and well known for being so. Having read the sympoms of hydrocephalus theyshould have spotted what was going on but didn’t look at the bigger picture or my history. They say you shouldn’t google your symptoms but sometimes you absolutely have to.
Hi, I only had a mild injury. But still it would have been nice to have been told more than "you have a concussion, go home". And "working diagnosis post concussion syndrome" without any advice or explanation on what either of these things are. Also I found when I mentioned headway to my doctor they were not impressed.
(I had my first appointment with neurology recently and an MRI scan soon so hopefully we'll get to the bottom of things before too long.)
Hi Ftt1960
I live in Canada, so it's a different system, which has actually changed some since I went through it.
From my experience the only people here who get limited access to OTs etc are those whose injury puts them in the hospital. The people who have been through it say they the injury was too fresh for them to get much benefit out of it. Some of them end up with home supports. I don't know how - there seems no standard pattern for that among people I meet who have it. Some of them are more physically able than I am, and better at organizing, yet I don't have it and can't get it.
From what I see in general the medical community doesn't really understand brain injury very well, especially if you are well enough to be discharged and don't need any gear more complicated than some mobility aides.
They pretty much throw you back to various brain injury societies like Headway.
Where I live I have access to a brain injury society and I have gotten good info from them in terms of what the injury is and coping strategies, through group meetings, that only became possible for me to attend when we all went zoom because of Covid. They can do no advocacy and have no home support services, and have no medical people at all on staff.
There are no neuro psychiatrists doing out patient visits in my province. I also don't quality to see a psychiatrist because they only see people who need medications monitored. There are two neuro psychs in town. One works at the hospital and only does assessments, the other is full and does not offer a waiting list. She prefers to work with younger people who are high functioning and on the train of going back to work one day.
(Medical services here in Canada are by province - service providers in other provinces do not have to take out of province people, even if they do offer services via zoom. Most of them don't. Some provinces have a system where they will pay the service provider in another province, but they have to mail them their fee schedule and a bill, and it can take months to get their money, and basically they don't want the extra book keeping.)
If you have deep pockets there are a number of private pay clinics in the major urban centre - I don't have deep pockets.
I can also tell you if you have a family member at home you will get very limited home care support. You can get someone in to help with bathing if you have the right gear (paid for by you). They will also help give medication and help the person eat - but not prepare the food - you have to do that in advance, even if it's boiling an egg. If the person is bed bound you will get one 8 hour window of respite per month. Again - you will have prepared everything in advance because they only do the above, plus help with toiletting and getting dressed.
Most of the people I know have figured out their rehab on their own. Many times people here find the professionals actually make it worse - as we are often sent to people with no experience with long term brain injury - or worse, they think they know, and they don't. There are people out there told they are bi polar, for example, when they aren't bi polar - the pro just doesn't understand the mood swings that some brain injured people have are from the injury.
So yes, we want help. You want help. You want help for your spouse. And definitely you should talk to Headway and see what you can find. If you are looking for something well laid out that you can follow step by step, or something that is easy to find - I highly doubt you will find it. You have to hunt it down and do a lot of figuring out on your own.
Sorry it's like this, but you might as well know from the start that you are going to have to keep looking, be pushy, and with some you'll just have to say 'thank you for your time' and leave the office -never to return. (BTW, when that happens, and another professional brings them up, the key phrase to say is 'oh, Yes, I saw dr so and so but he/she wasn't helpful' and that's all you say. If you say why or you were disappointed or blah blah, it puts other pros off you - if you say they weren't helpful, they know dr so and so and so know immediately what their approach is and that's all they really need to know.)
The system really doesn't get brain injury - it was only recently moved out of the magic blue book of illnesses from the mental health category over into structural issues in the same area where MS and Parkinson's are put. Unfortunately, some professionals still think of it as strictly a mental health thing (it isn't) and also they don't get much training on it , and have no standard protocol to follow - so they basically aren't equipped to help you much. The good ones will try to support you anyway, but some won't bother.
Just keep going. That's all.
Leaf
I also have had none. My gp has supported me most. Headway website has been helpful too but no home visits or anything like that from anyone. I have a supportive husband. It seems you have to help yourself really. I felt lost in the world for years tbh and it’s been really hard at times but I’m glad I’m still here and keeping on going.
Things have improved since I stopped trying to use my brain like I used to because cognition and working memory aren’t how they were and I was getting more and more depressed, stressed and anxious. I have had to simplify things and use different aids to assist me and act as prompts and also as reminders. It’s taken years to get to this point of acceptance and to stop forcing myself to try harder. I ask if I can record things etc
Let me know if there is anything you’re struggling with and I can try and help if I have the answer. Unfortunately services are withdrawn such as counselling through Headway. Generic counselling isn’t as helpful and counsellors don’t have the experience or expertise often to deal with brain injury.
Wishing you well 😊
Basically the whole system sucks. I will keep looking. My partner is fab but I can’t let him do it all.
My experience pretty much mirrors yours. I suffered an ABI when my heart stopped in 2018 and I was down for 15 minutes. The hypoxia caused widespread permanent damage and I was paralysed and blinded temporarily (thank the Lord). I was discharged into the care of my wife, who is not a trained nurse, and the ward sister warned her to turn off the gas supply to the house (as she feared I was dangerous obviously - didn’t stop them discharging me however!). I was invited to attend a gym in another village despite being unable to walk very far (the centre was two bus rides or a £20+ taxi fare away). A neuro-physiotherapist came to my home with an OT but she had to stop treatment as it was causing pain and there was no pain management in place (four years later there still isn’t! Paracetamol doesn’t really touch nerve pain.). I was then abandoned by the NHS and left to rot/die. I have made repeated requests to the GP over the years that have fallen on deaf ears. Last year, a locum at the surgery advised me to watch YouTube! Provision of aftercare is a postcode lottery and it seems we live in the wrong areas to receive it. My experience has changed my opinion of the NHS. It is very much like the Curate’s Egg with excellent surgeons and cr@p GPs and aftercare.
Have you not been offered a pain relief regime for neuro pain? I have neuropathy and take Gabapentin and Duloxetine for the pain it causes, itkeeps things in check byt doesn’t work for everyone. It would be worth asking your GP to try something similar.
Thanks for the suggestion. The senior partner at the surgery thought it was a good choice to try and gave me a prescription for gabapentin without hesitation. I am now on Day 2 so two tablets today. It worked overnight and I did sleep better. An example of how my memory still plays up is that I forgot to ask him for neuro-physio again. We are going to speak in a fortnight for him to check how I am tolerating the neuro drug so I shall try to remember then.
My husband never received any follow up either. I am now fighting to get some help post 8 years since injury as things are definitely deteriorating, he has had numerous tests between Oct and Dec... but now on a waiting list for the Psychiatrist to check and diagnose... they cannot say how long that will even take!
I wish you luck for your husband’s future treatment. I had written to my neurosurgeon listing all my issues. It didn’t speed up the follow-up appointment but at least she was well prepared when I got there. Now wheels are in motion with some urgency to treat what could be a life-threatening situation. I have had the pre-op for the first procedure but have been told I could wait up to 8 weeks before being treated. I am extremely anxious about continual brain damage but I just have to hope they know what they are doing.
I have to say that my Headway group has been very beneficial. I have received support with mathematics, an area that I now really struggle with despite having been a primary teacher. I have also been offered cgnitive education. I mussed out last tear due to having Covid then being on holiday for four weeks. I may miss out agan this year, as I don’t know when I’ll be in hospital. There’s always next year.
good morning,
Unfortunately this post rings extremely true!
With no follow up appointments to ensure I’m recovering in an okay manner, I’ve been made to feel that as soon as I could walk, talk, toilet and shower I was waved goodbye to.
I feel extremely sorry for anybody without an amazing partner to help during this time because things would have been so very different.
Take care,
i was actually discharged twice then readmitted as an emergency for further surgery on my brain. My case was just not handled properly. Now that I am 18 months along the recovery road I have so many questions about the treatment I received post accident. Simply not good enough. I was even discharged from one hospital only for them to call the house looking for me! I need some sort of advicate to take my case in. I don’t want compensation, I just want sytems improved.
ahh with the current situation and way the NHS has been forced to struggle along, it’s a difficult time.
You mention compensation, I myself was involved in an accident and have chosen to claim personal injury, mainly for the reason that I can now have access to private care.
My accident was my own fault, so no compensation available. Two of the chaps in my Headway group went to court after being knocked off bikes and were successful.
I agree with what you say about the NHS struggling, lack of funding, Covid and Brexit have all hit hard. I just feel that mistakes were made in my care. After bashing my head in the kitchen I went out on my motorbike unaware that there was a ticking time bomb in my head. I blacked out and the bike crashed when I was no longer in control. The doctors didn’t accept the seqeunce of events assuming that the head injury happened in the accident. It took my partner to push the issue that my helmet would have been very damaged at point of impact when it wasn’t and, as an advanced motorcyclist, the accident would never have happened had I been conscious.
Despite horrendous bruising across my shoulders they were never examined, neither was a knee pain I was struggling with while in hospital. Over a year later I found out I had suffered torn ligaments in both my right knee and right shoulder. I still have oain now despite lots of physio. The sud-dural haematoma was kniwn anout but left untreated while in hospital. When I was being duscharged after rwo weeks I asked about the constant headaches noy to be told it was probably me coming down off the morphine that I’d not had for days. Three days after discharge I was stumbling, slurring my speech, complaining of a severe headache and my right eye had swollen. An ambulance was called and I was taken back to hospital then transferred to the neuro specialists. The haematoma decided it wanted to be treated.
I could go on about all the things that happened. Perhaps I should write a book. It would fall under the category of medical horror.
aww I’m sorry to hear that.
Unfortunately not the first horror story. I genuinely do believe that the NHS should be more aware of this invisible disability they call the head injury.
I also share a similar story in that although I was bruised and cut on one side I was released with no checkup - fast forward and I can barely move my left arm, it proves that we do have to kick a fuss to be seen (damaged brachial nerve) after 1 year I am still attending physio.
Good morning ftt1960
It is incredibly sad to read and hear the same story regards head/brain injury day in, day out. The system doesn't understand brains, they are a bit complex .... I am resisting the temptation to be flippant, therefore it ignores. Most I have met physically and virtually tell the same story of abandonment.
I know it's energy sapping and totally demoralising but after 25 years experience my only advice is keep going, fight for help everywhere you can think of - your local Health Authority/Brain Injury Service/Mental Health Services, your local Headway, your local Council, your local MP, maybe even contact Chris Bryant who is currently steering his Aquired Brain Injury bill through The Commons.
It is hard work but the only way - I have recently made progress with my local Brain Injury Service but it will likely fall over again shortly. They will not get away. I have an e-mail from local Headway to answer this morning - they also need to do a lot better.
Best wishes
Michael
n my discharge notes it said to contact Headways …that’s was it .. I did see other Dr as I had broken other bits of me but the fracture skull and bleeds on the brain I had nothing .. it’s gone two years now and I saw the neuro rehab last month because I had asked my GP lots of questions that I had no idea about and nor did the GP … I’m unsure the neuro had even read my notes from the conversation we had ..
I am a very determined person who lucky remained that way after accident as I am unsure what someone without this drive would be like and it scares me how bad our NHS is regarding head injuries ..
good luck with your recovery and don’t stop asking for help as it should be offered not begged for .. sue x
The way you’ve been treated is unbelievable. I know some people at my Headway group were contacted while in hospital but I was in a Glasgow hospital rather than an Ayrshire one. Some people were also sent to rehab locally but nothing for me. I think the system needs to be reviewed but goodness knows who would do that.
I would happy talk to the rehab teams to explain what it’s like from this side and I’m sure others would do the same … they have no idea what going to happen to you but if they just listen to the people on here they would get so much consistent feed back from the people who actually do know .. such a shame the link between everyone is so bad … lack of communication causes most of all our problems 😢
I was very fortunate my sister was from an occupational therapist background and pursued help on my behalf. I wasn’t given any help either. She found a rehab centre that I could access and phoned them, got my notes sent and spoke to my GP, she also chased a neuropsychologist back at the hospital where I had surgery done. I struggled to speak and couldn’t use a phone, so this was really helpful. No body told me I had a brain injury or that the mass on my brain was a massive tumour that presented itself very unusual. I found that out 6 months later at my consultant appointment, it was huge! I also referred myself back to speech and language after the rehabilitation team said my speech was adequate, after a year.
Talk to your GP and see what is available in your area. You are entitled to access any help no matter how long ago your brain injury occurred.
So many of us have no information when we leave hospital .
that's a shame, I received occupational therapy on a weekly basis which gradually wound down and also had someone to visit to see if I coped ok at home, I was 7 weeks in hospital and had to beg to get out, cos I thought I was in there forever.Everyone at the NHS has been brill, I am now free of all that and my recovery is moving forward, which is good. I am now seeng a therapist that deals with trauma and she does EMDR,so far so good. I came off my bike and landed on my face which gave me a brain bleed nearly 2 years ago, but its all moving forward and I hope I will get back on my bike soon. just to mention, I was helmeted the whole works, if I wasn't I could have been dead.
The saddest part reding the replies is it seems little has changed over the years.
On my discharge I missed headway picking up head injuries by about a month. It has been a struggle with treatment since. I suppose I was lucky to get some compensation which I used on private medicine.
I ended up using all of it to aid my recovery, something I do not regret and feel fortunate being able to do.
It saddens me that over the years there has been little improvement.
Pax
it’s been three years nearly and our 33yr old son has had very little input, everything they do is short lived, or he is so much in pain after TBI not only that frustrated because he is no longer able to read, therefore work. He was also a great outdoors guy, mountain climbing, marathons, extremely fit. Very intelligent numerous degrees , including masters ..
This could have all been prevented if they’d only listened, and acted a lot quicker.. it has destroyed the happy family life we alas parents and his siblings.
If this is how the medical profession treat one of their own. What chance does anyone else have. The least they could do would be to apologise and give him a pension. This happened just before covid, using this as an excuse they had time and the opportunity to prevent it if they acted professionally.
It’s difficult most days he can’t lift his head, his friends have deserted him. My husband and I do the best we can, but being so close it is us that gets the blame when he’s down. ( retirement it’s just a word in the dictionary to us)
Life often feels over even for us.
Oh dear, your reply makes painful reading. It’s very true that you find out who your true friends are after such events. I didn’t have many friends but have lost three of those. One ‘gave me space’, 18 months before getting in touch despite offering to visit when I was in hospital but not being permitted due to Covid. The other two, a couple of bikers clearly decided I would no longer be riding, so dropped me. I have been riding and inly just made the decision to stick to pillion with my partner.
When I started reading your post I was going to suggest literacy support from Headway but that would mean being able to attend meetings, which I guess would be challenging. Would it be worth pursuing compensation or at least an apology? Quite a time consuming process.
What I find hard to believe is that there seems to be no sort of advocacy support to help tie things together. I have no idea what to suggest for you. We are all at sea in a ship with a broken rudder. The mistakes made with my care were ridiculous and those mistakes are still happening. I am now thinking about changing GP surgery, as I have totally lost faith with the current practice but, because I live in a village, it’s a challenge.
I wish you all the best with the battle for your son. They say you need to accept the new normal but it sounds like that may never happen. I fully understand his frustration with not being able to do what he did before. I was diagnosed with neuropathy 11 years ago and went from hill walking to struggling with stairs. Life can be so challenging.
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