Today I received a psychology report for my claim for BI. It recognises that I have post concussion syndrome and that the symptoms I have been experiencing are from the PCS.
A number of you may be going through a claim and may be experiencing problems getting your condition recognised. I had big problems previously with neurologists who were saying that it's just stress and must be from some previous time in life. I replied to these saying they were just making it up and they were liars (it did not go down too well). My solicitors agreed with them and I took them to the legal ombudsman complaining that they were not representing me properly. One of the complaints was that they refused to update my medical records for consideration. I won the case with the legal ombudsman and the medical records were updated and the case resumed. This latest report shows all my diagnosis and treatment for PCS (important point here, if you get any private treatment make sure you get it included in your medical records, your surgery should just scan it in and add it), nerve damage and visual problems.
This latest report takes all this into account and says my symptoms are due to PCS and not from any previous condition, (I have a period of depression 9 years ago). So please take heart and don't give up on your claim no matter what 'the experts' think and fight your solicitor too if you think they are wrong and keep updating your medical information to your solicitor.
I have written previous posts on my situation if it's of any interest.
That's great, should have been that way from the start so it's a shame you've had to go through that just to get the honesty you are entitled to.
I'm not able to claim although I never thought about it but it's a good idea to get my vision therapist to contact my GP and add my treatment to my records 👍 my first vestibular folk sent them my imPACT test scores and other comments but I never thought of the VT 😊
I am in a completely hellish situation, sounds similar to you in a lot of ways. Doctors, neurologist and solicitor all working against me. Dont know where to turn.
I was I'll for a few years becoming increasingly ill. Docs could find nothing wrong, they diagnosed mental illness and blamed things from my past. I was so physically ill that I was just existing. Then the explosion in my home. The experts, chimney people etc. . Were baffled as to how I had survived, my home was saturated in toxins, carbon monoxide leakage and other residue from other poisons. It took almost a year to sort my home out and my health gradually improved in some ways. I was left with balance problems, confusion, incontinence, visual blur, tinnitus, pain and burning skin sensations. I took all my documentation to my doc surgery thinking that at last I would get help. But no, I had to really fight for a referral for a brain scan. Two years later I had one. The doc must have spoken to the neurologist because he immediately mentioned an event from my childhood, the same as the doc. I explained about the carbon monoxide and my symptoms. I had the mri and waited on his report. It said that I had periventricular white matter damage, ischaemic lesions and other markers. But that the cause was non specific!!
He said the findings were not classical carbon monoxide poisoning related. He advised that patient gives up smoking. ( I smoke about 5 rolled cigs per day)
The information provided by Headway neurologist factsheet and his other papers state that brain injury caused by carbon monoxide poisoning is the periventricular white matter. The other toxic gases released at the same time as co, cause ischaemic damage. My solicitor said that the neurologist who saw me and the docs opinion have said that my injuries have been caused by something non specific!!!! It is ongoing 6 years of this, every time I need medical care for anything, I mean anything, no notice is taken of the events that injured me, only distant things from the past that are not relevant at all. I cannot get any medical support because of the wrong information on my medical records. Sorry for long post.
Find out if your solicitor is registered with the SRA, solicitors regulatory authority.
Next change your GP and move to another practice asap. Say you have lost confidence with your old practice and you would like a fresh pair of eyes to look at your situation. Make sure the new practice has a good reputation. It's really important not to mention any claim or that you are ultimately going to use the information for any legal process. Let the medical information speak for itself. Say that you are not looking for any kind of blame towards the last GP, but that you are really ill and need to find a way to get better.
Ask nicely for a copy of your medical records and check the symptoms describing your mental illness.
What you are looking for here are the same symptoms as from the fire, toxins etc.
There is whats called a manifestation profile. Your mental illness will have a manifestation profile and it is like a pathway set into your brain, basically if anything triggers the pathway the symptoms are always the same.
If the symptoms from the toxin poisoning are different from the ones from the mental illness then they can be separated. New symptoms are from your current illness not your old illness.
This system is used by the military to separate PTSD from BI when compensating military personnel.
Ask your new GP to refer you to a new neurologist, preferably with poisoning experience. Insist on this even if you have to go outside your health authority area. Get your new GP to refer you to a neuro-psychologist or clinical psychologist to separate out the symptoms affecting you from both the mental illness and the toxin poisoning. You will need to be brutally honest in this, you cannot fool a good clinical psychologist so honesty is the best. They will peel of your psychological layers one by one and find the cause of your symptoms. I have had this done, it's a difficult process and will take a couple of months.
You will have to wait for these reports before you can tackle your solicitor.
Lets start with this for now.
I'm thinking if there is another way to tell if the toxins affected you. The body holds on to some toxins, some cause physical damage to various parts of the body. Let me think and ask a few friends if they understand this poisoning process.
Just to add, the carbon monoxide over the period of four years damage periventricular white matter in the brain and cause extensive nerve damage. I have these, these are verified on my medical records. Headway accepted me as a member because of this evidence of brain injury. Docs couldn't deny this and signed referral to Headway. The stupid thing is the docs are saying they dont know what caused my injuries!!
You need to have a review of your symptoms. A new doctor would be a good start and hopefully would help to clear things up, maybe get some treatment. It's a big step to take but it sounds like it's all twisting you up and you need some recognition.
Hi, had a chat today with a friend who was a GP until a couple of years ago (she quit and is now a gardener), I asked why was it that GP's and neurologists etc always use the excuse that a patient is suffering from a mental health issue if they have had a brain injury that can't be diagnosed easily. The simple answer she said is because they can't give an answer and immediately find a mental health issue to explain the symptoms. It's their way of saying 'I don't know'. We chatted on and she said that you need to find the right person to diagnose your problems one with the expertise in that field. She said decisions that are made are general in nature and have come from a board of 'experts' but they tend to make the decision of what to diagnose, in general, based on the outcomes of collected data where the symptoms are expressed. This means that if 55% of patients have a condition then by their rules it means that every patient that shows these symptoms will be diagnosed with the condition that the 55% of study patients express. The conditions that the other 45% of patients have in the data material are not taken into account as a general rule. So it is important to get diagnosed by a consultant who has real expertise with toxic poisoning.
Thankyou so much, I really appreciate the time you have given me. I understand what you have said and it comforts me to know that my frustration is not dismissed. I dont think we have anyone here in northern ireland, I wouldn't even know how to find out. It is pretty worrying that people are suffering and are told regularly that mental illness is the cause. Thankyou again so much, please take care of yourself.
Hi Deborah, thanks, your post sounds like you are going to give up. I'd say don't, remember that the health service in NI is devolved to Stormont and they have not been sitting for years. Now that they are back again I would suggest going to see your elected representative and explain the situation, take someone with you who can help explain the situation, maybe someone from your local headway group or someone you trust and can speak up for you. Keep it nice and simple and explain the situation clearly. Explain what the fire service said about you, do you know how long you were in the toxic fumes? Remember that it does not matter what conditions you had before the fire if you have been exposed to toxic fumes for a period of time there will be consequences. You are experiencing these and it is important to find out for your own sake. There will be help for you somewhere even if you have to cross the water to Scotland or England or even to Dublin in the Republic if such a cross border system exists. You have to get this help somehow and seeing your Stormont member is another option. You will be amazed at how fast the wheels will turn if your elected member starts asking questions.
At the end of the day it's up to you to decide how to proceed. You may be anxious and a bit scared to take the next step. It is daunting and a big leap but things start happening when you do. I changed GP practices after getting nowhere and my new GP took the situation very seriously and arranged all the right referrals 2 of which were in England because my health authority did not provide those services, I live in Wales. One of them was in a private hospital, the difference in service is astounding. I used my MP when the DWP were being a pain and I was on the verge of homelessness. He did not have to get involved in the end because I was advised to tell the DWP that I had been to his office, which I did and hey presto the wheels turned, DWP managers were phoning me in the evenings to explain the steps they were taking. I took my solicitors to the legal ombudsman and once they contacted the solicitor everything began to work out just fine. I have noticed that there is a no can do attitude in just about every agency that I have had to deal with BUT once you take the steps to challenge them 'no can do' quickly changes to YES CAN DO (with bells and silver stars on).
Although it's all quite stressful and anxiety levels go through the roof there is a beneficial side effect, I am much more confident as a person and better informed about how to deal with formal issues and best of all it stimulates cognition and improves factors of brain injury, (complaining and fighting by extension is therapy for the brain)
I'm from NI too. Their ignorance extends to concussion also. But Pink is right. They are just gonna forget about you if you let them. That's how they treat folk. If you don't fight for yourself, you'll get nothing. No help, no understanding and no recognition of your right to be taken seriously and for something to be done to help you.
I had this too I was told that it was due to stress in my life and not the tbi, and after 5 years I got a good nuero who said it was causation from rta. I think you are doing well I had a long claim over a decade, and I then I had reductions for other things like the pay gap, I would take early retirement(I had no idea why I would retire early! Legally it is all based on how you would be had you not had a tbi)) anything they could think of really, good luck.
-I still have people saying my symptom are unusual (not just doctors gp s have been ok), which I don't find helpful , or they hope it is has cleared up , but I have had a life changing injury , which has not changed much for 15 years and is in some ways worse like worse light sensitivity to the now brighter artificial led lights,
. I would like to be better and more active and I am trying to get better and I try new things, and I like this this forum and read it for ideas of what I could do to get better, although screens make my headaches worse etc.
I would like a clearer gp summary and it so say post concussion syndrome. I wonder if other people with pcs have headaches and migraines made worse by movement, and light induced migraines (caused artificial light) I wonder how unusual I am in having to pace myself to avoid severe headaches and migraines. I have diagnosed with as a causation of tbi from rta,
Hi Amber-11, it's really stressful journey getting these conditions recognised. I'm glad you got through it. I see you are still having issues with light sensitivity and headaches. Myself and a few others on this site have tried vision therapy, there are mixed results, myself and Feebie8 have had brilliant results, seriously astonishing results. The therapy is through neuro-optometry. This however is not yet recognised by the medical establishment so some people think it is some kind of pseudo science. There is a large body of evidence from around the world showing that this therapy works. There are quite a few universities in the UK that train people in their medical science departments, so it's not a fad, there is real science behind it. I have e.mailed Headway asking them to have a look into this and try to inform people. Have a chat with Feebie8 on the subject. If you can sort your vision issues the whole world will open up, less fatigue, better cognition, no more headaches.
I just read your post Deborah good luck it took 5 years and then I had two neurologists who wrote my rta and tbi were the causation of the migraines, the earlier ones said it was stress. A migraine specialist said he had come across exertional migraines after tbi and could I run 25 metres, which I can but I would get a terrible migraine, he then said I had a big problem with exertional migraines, I was so relived but the claim still took over a decade to end. The earlier doctors opinion was stressful. as I never had a migraine or even a headache requiring a painkiller before the tbi and I worked full time and some weekends in a job which was exertional and I loved being outdoors and active.
Thankyou for your reply. I will keep trying, its exhausting and upsetting to be living a life they aren't recording accurately. I wont give up on myself. Thankyou so much for support, it makes all the difference. X
I live near London and would like to see a specialist when I can afford it. If you know of a Dr I could contact that would be good. I would so like to not have headaches.
Hi Amber, I did a quick search on the BABO site and there are loads in london. The name Smita Travedi is there I have come across her before in other searches.
It is really important to find out if they can assess your particular issues, you have visual issues following a BI, it is really important to stress this. Her web page looks as if she knows what shes doing and the is plenty of information and links. Looks like she does balance exercises as well. Have a chat with her. Please keep us all updated.
Well done getting that Psychology report stating that your symptoms are PCS related and not any other mental health issue. I'm in a very similar position to you and desperately need to find a psychologist who recognises that PCS exists and can report that my symptoms are to do with PCS. My solicitors even agree that the neuro experts stick together and don't want to recognise that what you are going through is due to anything other than a pre existing condition. Can I ask who you saw for that report?
It was Mr Valentine, psychologist consultant in the Liverpool/Wigan area. His assessment was purely psychological in terms of past mental health and anxiety and psychological trauma from the accident. He said there is no influence from past mental health, the accident caused moderate psychological trauma and the 'alarming' visual symptoms and panic attacks and fainting/blackout episodes are due to post concussion syndrome. He stressed a number of times that he could not comment on these as it is outside of his field of expertise.
My solicitors are now getting in touch with the neurologist that said my condition was due to past issues and had nothing to do with the crash.
When I saw the neurologist first I has not been assessed by the health service, so in my medical records there were no details of my condition and that, I think, was why he said everything was down to past issues. He will now have to take my updated medical records into account along with this new report and write an addendum report stating all the facts.
I had to fight tooth and nail to get my medical records updated by my solicitor. At first they refused saying I had to agree with the neurologist. I took the case to the legal ombudsman and won. My solicitor now has the threat of being investigated if they do not represent me in accordance to the solicitors regulatory authority.
I need to point out that you cannot choose which consultant you go to see for the legal side of the matter, they are appointed independently by a medco-legal firm, they act for the court and not for either party. Personally I find this process quite suspicious because if you google the doctor you are going to see you find that they also work for the insurance industry. Conflict of interest or what. This practise came here from the US and over there now they are trying to get rid of it because the whole legal claim set up has been infultrated by the insurance industry. These doctors get paid enormous sums by the insurance industry to reduce the cost of claims. When you start looking into it it's mind boggling. However her in the UK you can also complain to the ministry of justice if you feel you have been mistreated by these doctors because they are acting on their behalf in writing these reports. If you give up then the insurance industry wins and the neurologist finds a nice bonus in his christmas box.
Ranting and raving is no good, go through the correct procedures. It was really surprising how my solicitors jumped to it once the legal ombudsman got involved.
It may interest you to know that now the BI is recognised and is in writing from the expert my solicitors seem to have gone into overdrive and are getting all the other symptoms from my accident assessed also, ie nerve damage and ENT issues. It seems they just need clarification from a consultant representing the ministry of justice.
Thankyou for your message. I wonder if you could send me the name of the person you saw, I am sorry I would prefer to see someone who is been recommended following a successful treatment.
I saw Janet Green in Wigan. She is not neuro trained, which she specified before we began, however she seems to know her stuff. I think it may be an idea to go and have a chat with Smita, see what she has to say, explain that you are a bit concerned as to whether she can help you or not. You may want to try and contact John Glover in Greater Manchester area. It seems he is the number one guy.
There is another thing I should point out and that my visual issues were different to yours, I had pattern glare, that's what I was treated for. I also have sensitivity to artificial lighting, these are totally different things, whereas Janet could treat the pattern glare she may not be able to treat sensitivity to artificial lighting. With this type of lighting it could be the wavelength of light or the frequency that the light is emitted or a mixture of the both. I am trying the allergy method of treatment which was suggested by an OT who assessed me at Gobowen hospital.
Try Smita to see if she can relieve some of your symptoms first. It took 14 months to correct my pattern glare but I still have sensitivity to artificial light. I think getting that first bit of relief made such a big difference. I totally avoid artificial light if I can help it. I live in the countryside, going into town is a nightmare because it is full of artificial light.
I am better in the countryside too, where there is no WI fi or phone reception so I cannot use my phone, and lots of green landscape, as opposed to a supermarket!
Sunlight is easier to manage thankfully, with a good broad brim hat and dark glasses (I got extra dark about ? 85% for sunlight) and with my back to the sun. It is the artificial light that is so difficult in addition to a hat and darkglasses I also shut my eyes a lot if I am sitting down.
Trains and buses are difficult with close to me bright over head lights. I don' t have any patterns and mainly need glasses for reading.
I have dark bi vocals as I thought vari focals would be too hard work for my eyes. I like bifocals in natural daylight, but artificial light is awful and so is my phone screen modern bright tv s etc, I have black out blinds at home so I can rest in a dark room.
Thankyou for info is allergy method about food allergy?
No the allergy method is basically exposing your self to artificial light for a period of time until you can't stand it anymore then resting a few days then doing it again. I had to be sedated to go to hospital because of the effects of the artificial light on my body regulation, I can go in fine now for up to an hour and a half.
I think from what you have just said it would be a good idea to get tested for a range of visual issues. 85% block for sunlight is excessive, mine were 47%. It's important to understand that sunlight has the full spectrum of emitted wavelengths, you maybe are only affected by some in both the visual and non visual range. This can all be tested for. Just have a chat with Smita and others in the london area, search the BABO finder page. Just make sure they understand your needs before going ahead with testing.
Another thing have you been assessed by the ENT, ear, nose, throat department in your hospital. Many visual causes are in fact vestibular in nature.
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