As you all know 12 months ago I learnt that I had a major life threatening TBI 50 years ago
Since then I have immersed myself into finding more about the results of the injury
I have the support of my GP and am waiting for a Cognitive Counsellor appointment
The problem is the more I find out ( and the boxes I tick ) the more depressed and angry I get
I thought that the knowledge would help
Although my BI journey is now into its 3rd year, I flip/flop between the depressed and understanding. Sometimes the more I understand the more I realise this is it, the best I can get.
Other times, like when I got a balance assessment and sat there with the technician whom pointed out what was broken and what was ok, I found it strangely beneficial
I guess for me it is the long isolated journey for over a year before I had any formal diagnosis that made me research the most. I guess if my GP had sat me down and said these are the symptoms to expect, this is what to do and not to do etc. I wouldn't have done so much research and accepted my injury a lot earlier.
I still see it as a most peculiar system in which we're cared for with such expertise and dedication for ??? however long (2 months in my case)...........then sent off home with just a leaflet & no other form of support whatsoever.
The crash course we put ourselves through to understand Head injury issues is inadequate and needs replacing by a standard Health Service aftercare programme for everyone, where they could attend group education on what to expect, and what is required, to cope both short and long term with our after-effects.
You absolutely spot on. Our NHS is 99.999% perfect when it comes to a sudden critical illness - when you are being brought in after a traumatic injury or need sudden treatment for something urgent. The whole system kicks in really quickly.
However, as you say its when we are nearly mended we get kicked out for the community services to finish the job. It is from this point everything falls apart.
As an aside my wife has Type 2 diabetes and now because of what she has found out herself she is now more knowledgeable about it than the dedicated Diabetic Nurse in her GP surgery.
On TV today is the program on James Cracknell's journey across the US where he get hit by a tanker. Refreshed my memory of his accident and saw thin on the Daily mail website
"Amazingly, the doctors had left it to James to organise his ongoing care, such as neuro-psychologists and occupational therapists.
He was given no written instructions for his daily cocktail of drugs (anti-seizure medication and sleeping pills) and began by taking his sleeping pills every morning. The consensus was that he should be 'allowed to make mistakes'"
Amazing really
Read more: dailymail.co.uk/femail/arti...
At least we don't get a bill for health care
seriously though: is their a difference in how other countries cope with TBI'S
Yes I appreciate that things could be a great deal worse, e.g. living in USA, but that's not to say they shouldn't and couldn't be better.
Good point about the treatment elsewhere dillm; the comparisons would be an interesting subject for a documentary programme.
When my symptoms kicked in a week after my accident I was given a patient.co.uk print out about concussion by the doctor and told it will pass. But if I was worried to go to A&E and get a scan...which I did. Until now I've had very little to do with doctors. I agree about them being good in emergency drama but not so good with things they can't see. one thing I've discovered is you can't give them more than one ailment per visit they can't cope. Basically TBI is a specialist area which most doctors simply aren't qualified to deal with. Sadly from what I've experience of the NHS I really don't think it's fit for purpose.
Yes, it appears it was thankfully, although the amount of detail a CT scanner can define is limited. Now waiting to hear from the neurologist. Information is helpful but sometimes you have to filter it carefully.
I had to stop reading anything about things to expect after TBI, I ended up getting very depressed because I was convinced I had all the after effects and if I didn't then I would at some point. My OT said I was doing amazingly well and had to stop looking for problems. The main problem I have now is depression and up and down emotions. I've been sent from pillar to post and no one seems to know what to do. My local headway wanted to charge me £40 SAab hour for councelling!!!
I am glad that I have been able to bring this to the forefront it has given me the encouragement to raise the lack of care for TBI survivors when I attend the Patient Forum next
I think that is a really rational response. x
Could I get some opinions please......
More than another day.
Son getting depressed
