An acquaintance mentioned something a while ago that it quite interesting.
Since your injury / illness many people have learnt a lot about recovery, treatments, therapies, medicines etc.
So if you or someone close to you, had this information from the start of you injury how would it have shaped your recovery/rehab ?
Do you believe you would be further along by now ?
No, because the infrastructure isn't there at the start in the NHS.
It's going to take a lot of effort and changing of attitudes at that point to improve the lot of many people with health problems.
Janet x
What about if someone would have advised having your vision therapy earlier - would you now be reaping the benefits of it ?
Possibly, but the NHS have been insistent that my vision was ok, I've had eye tests locally and even in a hospital ophthalmology department but it took assessment here to spot that the visual deficiencies I had are contributing to my balance problems. Here I am having the whole problem addressed.
They told me a tale about one of their " patients" being told by the NHS that the only way to cure his double vision was to remove an eye!!! Needless to say they have sorted it for him and he is back driving now.
Don't get me wrong, I think the NHS does a marvellous job, I wouldn't be here today without them, but it has its limitations.
I think all brain injury patients should be assessed for hyperbaric oxygen treatment early on in their recovery too. I would have liked to try that.
So, yes I suppose if you arm people with the right information then you should get a better outcome.
I've gained such a lot from acupuncture, Tai Chi and the vision training but I've been in a position to pay for it, many people aren't. Plus, you've got to want to do it, without the drive to do all the exercises etc, it's not going to happen is it?
Janet
I don't believe I would be further along. I do think my husband could have and should have been better informed though. He was....."drowning" in my illness with no constructive information or help. I got help he didn't.
We have met people since my illness with similar illnesses and we try and inform/pass on our knowledge to both/all sides and so far have been very successful.
I am often heard to say "if we had had an us around in the early days we wouldn't have had so much pain/heartache and misunderstandings.
Things have moved on in patient care/rehab. But I don't believe it has for the carer.
The "I am often heard to say "if we had had an us around in the early days we wouldn't have had so much pain/heartache and misunderstandings"
Is the thing I was thinking about, if all that had been available at the start, rather than having to find out the information yourself or even by accident then your and your husbands journey could have been a lot different
Maybe I should have said just someone with the knowledge we have gained over the last 4 or 5 years since my illness
In the early days I didn't have a clue and if someone had said "go to the moon" I would have replied "where do I get the bus" I seemed ok, but I clearly wasn't ok. My husband and son remarked about that many times... She's very different now , but the doctors didn't really listen. They put me back together physically the best they could, but mentally they didn't fix me, they left that to hubby and family, The problem with that was they gave no guidelines/help/procedures of what to expect
I know "one box" doesn't fit all but..............
I would say not necessarily because in this country although you would think you get the same care, it is a lottery as to what treatments are available to you in your county. Its sad to say, and its frustrating it also depends on what kind of hospital you have. The nhs use to be great and I use to be proud that I worked for them, now its going down hill. I wish they got rid of all these managers and gave more care to patients. Sorry I'll get off my soap box lol
" I wish they got rid of all these managers and gave more care to patients."
My brother is a car park attendant in one of the local hospital. The staff car park is bigger than the patients - now you would think that there would be mostly medical staff ......
Sorry I'm not understanding?
There are about twice as many car parking spaces for staff as opposed to patients. Of the staff car park the majority of it is filled up of non medical staff - managers, secretaries, admin staff etc.
It drives him mad because there 12 disabled spots near the entrance for the entire hospital and next to these are 28 spaces for senior consultants and managers.
Thats appalling they seem to have managers for everything on wards they need to bring back matrons they knew how to run things. The nursing staff there aren't enough of. It makes me angry I had to put in a formal complaint on how I kept being shoved in a cubicle in a&e and not see anyone for hours, then discharged. Drunks and drug addicts got more attention than elderly or disabled. I had a meeting with snr nursing I said we go into a&e scared and in pain what does it cost to hold someones hand reassure them and check if they need anything its not asking much
Hi Angelfish - I have nothing but praise for the NHS which I hadn't before much need to use except for Surgery. I left UK in Jan 2008 so I was abroad for the last 9 yrs - four+ of which the abroad health system did me NO favours - wrong and incompatible meds and inability to diagnose correctly, a GP who only wanted to prescribe Antidepressants- although yes I had plenty of blood tests and MRI's.
I've been back in UK since October, also bringing all my printed medical test results collected over those years and can only say the NHS via my new GP here, appears to be pulling out all the stops for me since then. 1 Specialist Appt date was b/fwd by 6 weeks already.
If I'm at GP surgery in person at 8.30 am I can see a GP on same day. By signing up with them, I can also order repeat prescription for my Levothyroxine, which will then be transmitted to the Pharmacy after Dr has agreed it.
So we must arm the professionals with the information and be prepared to help ourselves instead of just moaning. Yes there are queues -
The 1st post war baby boom occurred in 1947 - we'll all be 70 this year. So yes loads of elderly,
2nd baby boom was in early to mid 60's - so loads of 50+ Many women now menopausal with falling natural hormone levels, and other things can also have adverse affects on health as they get older. I'm sure many men also fall into similiar male categories. Hypo Thyroidism also appears to cause problems several years after initial diagnosis.
I'm not medically qualified, but out of interest and circumstance have done quite a bit of research and been nosey on health Forums just to see how my conditions, which others also have, have affected them in terms of symptoms etc.,
So much information we could all pass on to our own GPS about our own health. Over the years to come, If that happened, then I could see patient care and NHS funding being equitable eventually.
Well done and thanks to the NHS I say!
October ?? And you say men never write nor send flowers 
Hope everything is better now that you are in the cultural capital of the UK
Your lucky I have had nothing but a nightmare, I had to do all the leg work, research find consultants as the ones at my hospital we're appalling. I have also had bad surgeries that just kept giving me different drugs, and passing me off. I use to work for the ambulance service and then for nhs direct so I know what they should be doing and watch patients should do. At appointments I use to go in with all information written down for them. I was lucky if they gave me eye contact yet alone read my info. I think theres a percentage that have had awful treatment and then alot of others like yourself that have had good treatment.
Interesting one, hindsight being a wonderful tool, and all. The information-sharing on this forum has certainly helped me a lot, even in the early days, when I was angry/resistant about everything, I'd have my "How DARE you!" flap, go away, think about it, and then make a more reasonable choice on some issues.
As others have pointed out, the support just isn't there for the majority of us, and the cohesion between the various departments we can end up under is often sadly lacking. (Same eye test at 2 different hospitals, my optician had already done that test, and asked for a different one from my GP/Consultant... the GP assumed to know better than the optician and I, and the Consultant hasn't responded to me.)
The other issue, for me, is that we all have different issues, and different backgrounds/situations, there are some common factors, but I'm exceptionally cautious about 'telling' other people how I manage stuff, because some of my adaptations are downright weird. 'Knowing then what I know now' might have helped me, it's been 2 years of adapting to having bits of metal plugging defects in my brain. My 'soapbox' is that it's the injured person (in my case) that does the majority of the adapting, would it have been a 'reasonable adjustment' to ask the women I shared an office with to stop shrieking, or slurping their tea? Probably not, so it was me who ended up leaving the room frequently, because I couldn't deal with their noise.
It's a weird one to balance, to share stories and discuss issues on here, that helps, but I'm always cautious not to over-share the negative stuff, I don't want to 'scare off' new members, by saying "You won't be the same as before." Nobody at all told me that, either, and I'm effectively talking myself around in a big old circle. We do try to be positive, and encouraging, I think that's human nature in most people, but I know I'm certainly guilty of self-censoring, and quite often putting on the brave face, when I essentially feel like a sack of poo.
Knowing then what I know now might have helped with some of the decisions I've made these last two years, and knowing how some things just don't work, I might have tried other alternatives, but none of us have magic wands, or time machines, we just have to take it as it comes.
Understand you totally Gaia - it's here on HU I let off steam - but outside - like you, yes it's usually the smile and yes I'm ok - if asked.
Four years of letting off steam, self- pity, declining health but lots of research have all helped bring me back here to UK - not to mention keeping my brain active and hoping the undamaged bits have taken over a lot of what the other bits used to do
Yes, I definitely agree Sospan - it's taken me best part of 4 yrs to realise that if my Whole health history from birth had been known to both me and the various GP's over the years, my health would be better than now I.e.
A) if GP had not prescribed Metformine while I was also on Levothyroxine then my spleen would not have swollen and compromised my immune system, because I stopped 'regenerating' white cells.
B) TB as baby - my 1st autoimmune condition. GP's were always informed I'd had it - none have made follow on connections as other health issues have kept on arising - ALL recent ones, except Bone deformity (feet/hands) Spleen and Autoimmune Thyroiditis, have occurred since the cause of my BI - it will be 4,yrs 15/6 March :-
I'm making more progress with NHS in 4 months than I ever did in France since 2012. After blood tests and X-rays the GP here has now got me lined up with another blood test next week and health Specialists appts, I've already seen Orthopaedic one - next in line are the Endocrinologist and a Rheumatologist - dates and hospital transport booked.
Just a Haematologist to see and hopefully some physio or other BI help and I'll be running the Marathon for Headway and Thyroid Forum Charities
ALL conditions have connections with my Thyroid and/or Pituitary Glands since the TB infected gland removal in my neck as a baby!
I don't see how I can disagree with your Post Title question! Especially as I have proven through my own research, that having 2 so far specialists and this latest GP actually listening to me and NOT disagreeing seems to prove my point.
Of course we all know that stress, whether it's physical or emotional doesn't help health either.
A physio told me about 12 years ago, you have to become your own expert. As he said it is only you that knows if you are ill and whether a treatment is working or not.
As you have found as well as myself, it would be nice if the medical staff would accept some of the things we say or have found out.
Metformin, is a good example of this. When my wifes GP asked her why she was taking Vitamin B tablets, she pointed out that it was to counteract fatigue through the Metformin. The GP said it was her Type 2 diabetes that was making her tired. She explained to the GP that Meformin depletes the bodies store of vitamin B hence fatigue gets worse for diabetics. As she sat there rather indignantly there was a flurry of typing followed by Hmms, ah's and an oh as the GP looked it all up. Not a word of apology from the GP of doubting her or even the 6 years she had struggled with fatigue.
Same sort of thing when the GP wanted to prescribe me anti depressants after my injury, he didn't explain why at the time and naturally my wife and I rejected them. It was about 2 years before I found that it wasn't for depression it was to slow the brain down so that the brain can start building new pathways. Had I know that we would probably been more likely to accept them
Hi Sospan
I firmly believe that there never can be a one size fits all in terms of immediate and long-term brain injury care and rehabilitation.
While many of us deal with similar things on a daily basis every single person is individual and so is their bi.
Some will be able to generate and follow their own rehab, some will have to be told and made to do the work, some have to find acceptance before being able to contemplate rehab.
There are so many other things that impact on how effective treatment can be.
It is so easy to fixate on what could have been but it doesn't do anything to help us move forward.
Hope you get the answers you're looking for.
Love n hugs
Xoxo
My Mum or I had no knowledge of what was in store for me during my recovery. The only thing she was told by the surgeon, a Mr Bhati at Atkinson Moreley's Hospital Wimbledon, was 'He's likely to be a vegetable if he survives, he may be a little different.' That was July 1967.
Obviously not a vegetable [what a wicked phrase] but very different; I would have crossed the road to avoid myself.
There was no support for me and I went to work, got sacked, got another job, got sacked and so on. I studied for my professional qualifications whilst in recovery and surprisingly achieved good results.
It took around five years for me to make any headway [!] and another five for me to be noticeably different. I noticed what a shit I was and I made my mind up to change myself.
Remember, there was no DLA and few handouts. I feel that's not a bad thing; I had to sort myself out; I know some never can, but lots might with no buckshee future available.
15 years after, I stopped stuttering for words. I started a job where I was there for 16 years, the next 20 years [in fact I'm writing this at work, aged 67].
When I saw my Neurologist in 2014 she showed me the original folder with all the records of my treatment, including imagery from the op, X Rays and so on. Lucky to be alive she said - and looking at the size of the clot across my lobe and into the frontal part I reckon I was. She asked me if I thought no DLA, Social/medical intervention was a good thing and as I said, I never missed it!
So, I can never drive [intractable epilepsy], I swear like a trooper, I mock everyone and everything, I see humour in some very dark events, I still have a runaway libido but above all I have purchased my own house, been married for 40 years, three children - all professionals. I'm also in reasonable physical health apart from arthritis.
I've asked for no support over the years and none has been offered. Thanks to my Mum who cared for me in some very difficult times I am what I am and became something worthwhile.
No mention of my father .... well he pissed off for another woman when I was 13 and just back from Aden. He did come to the hospital a few times but other than that not much interest until I had reached a good level of recovery.
I once met a young TBI survivor who was totally reliant on the state. Flat, food, rates, rent, utilities and money in his pocket. Out on the piss every night - would I like to come out tonight for a drink or several - I wanted to punch his lites out --- a right mickey taker.
So, all things considered I suspect that if I was reliant on our socially obliging state I would probably not be as I am today.
Its only the depressions and the epilepsy and really neither is a big problem. [Other than having to use public transport that seems to specialise in transporting smelly, shitty people when I wish to use it .... which is why I leave early in the morning so I only get it one way.
Socially obliging state ? You might want to watch ' I, Daniel Blake'.
I only read your post- so true about public transport. I seem to always get the rude people shouting and swearing and the obese lot stuffing junk food down their throats!!! As it gets warmer I may get brace enough to cycle again (avoiding busy roads), we will see.
Please wear a helmet.
That is a definite!
"Knowing what you know now, back then.... " I answered the Q. Things change .... I said it how I see it, not what some movie would influence.
Sadly, my own experience of trying to get financial support after losing my job because of illness/resulting disability and that of others who have posted on here, bear remarkable similarities to the portrayal of how the benefits system works in the film.
I wouldn't argue with you because I have no idea to work on. When this happened to me Mum and I lived in a Council House. We were on our uppers thanks to my father.
She did apply for assistance and drew a blank .. a woman visited us and declared there was nothing wrong with me.
That was my only experience of that. I am aware that there is little work nowadays and if my TBI was today that would be it.
Please don't see me as unsympathetic; I spoke only of my own experience.
I just needed you to know that benefits have tightened up dramatically since then. The genuinely deserving are having a hard time getting what they need and being left unsupported. Claimants with medically confirmed conditions that render them too ill to work have been declared 'fit' by this system, and died shortly after.
Interesting that your Mum was told there was nothing wrong with you when she applied for help - 'invisible disability' is still being overlooked today in this way. Seems like things haven't changed much there !
You are quite right, the job shortage means employers can pick the most efficient/economical workers from the vast pool of applicants - people with disabilities who are looking for work often struggle to compete. Many employers do not want the trouble/expense of making 'reasonable adjustments' to take on new disabled staff. Existing employers can fire you on 'capability' grounds. All cheery stuff ! x
Have a good day!
No because with a closed TBI and nothing to see on MRI the neurologists are in the dark. All they can do is wait and monitor and, er, discharge. They are arguably the most powerless medical specialism of all! Also they are not interested in mapping the effects of brain trauma when they can locate and estimate the forces involved - ie what controls where. I was always surprised at the total lack of interest my neuros have shown in the crash helmet I was wearing with a large crack in the back and to one side...
How do you live with the not knowing?
What words do you use when talking about brain injury with children?
