We all know in the U.K about our random Postcode lottery when it comes to treatments? From denial of patients’ diagnosis, misdiagnosis of symptoms, over-medication, refused referrals to success stories of being treated on the NHS or use of referral to any holistic therapies etc…. We’d like to hear how you’ve faired in your area?
Today I attempted to leave comments on the NHS choices website explaining how our groups are available for ALL PCS sufferers for information & support…. This is the response I got to tell me my post had been deleted…. “Thank you for contributing to the NHS Choices website. We have removed your contribution because commercial advertisements are not acceptable. This site is for describing your experiences and not to promote a service or create any kind of personal gain. Please see the site Terms and Conditions or refer to the Moderation Rules policy.” – Short sighted & afraid of progress – I’ve been doing this for a few years now and have never thought of making a penny, I simply think others should be allowed to choose from a perspective of what is best for them, and not what they’re told by someone who doesn’t seem to want to understand, has no empathy or firsthand experience of the problem… Res Ipsa loquitor…
Kicking off with a young man’s first encounter with the medical world :
My name is Adam, I am 17 years old and I have been struggling with living with brain injury. My problems started when I was 14, I had a collision during a football match after school. We were winning and I went up to head the ball, instead I hit heads with another player.
I don’t remember how long I was down on the ground but people were stood over me all looking. I remember sitting up and feeling dizzy, the world was spinning. I went to sit out the rest of the game and when I got home I just wanted to sleep, my mind was full of flashing images of the accident and I carried on the next day as if nothing had happened.
The next day my Dad took me to see the family GP, she examined me and said that I would be okay within a couple of weeks and that I just had a minor concussion. My Dad asked if we should goto hospital to get me checked out but the GP said that concussion just sorts itself out in time and not to bother!
I was off of school for 10 days before I decided I should go back, I convinced my Dad that I was okay and to let me go. When I got to class it was hell! I could not concentrate, my head kept hurting, aching as if I was being kicked there again. My friends said that I was different, I didn’t join in sports again or have as much fun. Gradually my school friends didn’t talk to me much and I had frequent absences from school. My work and homework seemed pointless and my behaviour at home got worse. My Dad said I was being a pain in the arse because I was moody and quiet all the time and didn’t go out.
3 months later my Dad took me back to see the GP and I was referred to see a psychiatrist, this was hard for me I did not want to be labelled as crazy or loony and I felt like an outcast from my family and friends! When we went (it took 2 months to get an appointment) I had to take time from school and tell the teachers why, my Dad took me. We went to a place out of the town near a psychiatric hospital, an ugly looking place where nobody smiled.
I had to fill out forms there but couldn’t understand why and the psychiatrist was not friendly he just kept asking about my childhood and relationships at school. I was more unhappy than ever and then we had to go back again 2 more times to see him. The 2nd and 3rd times were more similar questions about all kinds of rubbish and I felt like crying, the psychiatrist treated me like aliar, when I said I was okay before the accident he made me feel stupid and said there may be nothing wrong with me. I knew this was not true, I had headaches, I was sad and moody all the time, I didn’t want to see anyone and then at other times I was unable to sleep or calm down at all so it would drive my Dad insane!
At the end of the 3rd visit to the psychiatrist he told my Dad that I needed to start taking medications, I was given Ritalin to take and told to come back in 4 weeks…
I had more problems taking that stuff and my moods got worse I was dumb and spaced out the rest of the time so it did not help. Eventually I had had enough and I started to hurt myself, I would bang my fists and sometimes my head on the walls when my Dad was not there. It made me feel better.
After months I missed most of my GCSE coursework and so much time off school that they put me back a year in school. My teachers had no idea of what I was going through and it wasn’t until much later that I found out that I had never healed properly from the concussion and that the GP and Drs had no idea why I was misbehaving. A friend of my Dad’s was a nurse in the A&E at hospital and she said that I might have something called Post Concussion Syndrome. She said I should go to see a different Dr she recommended and get another opinion.
I went on my 15th birthday and the man I saw asked me every detail of what happenend in the accident, he also asked and wrote down all my problems and symptoms and when we’d done he ordered blood tests and a follow up appointment. When we went back he said that I should not have been given Ritalin and that I had suffered a Mild Traumatic Brain Injury and had PCS. When I went back again they said that there was nothing that ANYONE could do to cure my PCS and that I just had to live with it until it went! That was all they said and I was abandoned again.
From then on my Dad had to struggle to look after me and things didn’t get much better. When I was 16 I had not taken my exams and couldn’t work. I had started to drink vodka and was taking ecstasy and smoking skunk without my Dad’s knowledge. When I got wasted with my new friends I could forget about the two years of hell, the time in my life I call ‘My Nightmare’ and I had 6 months of sheer wasted life. Since then I have tried to be more sensible because I met a girl who had been through problems too. We now live together and I look back at what the NHS did they let me down so much I trusted the Drs and they drugged me and made me worse. If I hadn’t had that I probably wouldn’t have gone off my rails later. I will never trust them again!
Post Concussion Syndrome & mTBI Awareness Worldwide 
my name is Veronica and i had a car accident in 2008,i did,t see my GP till a week later when i collapsed and bang my head .i was sent away with a sick note and no information just told i would be ok,like Adam i was told i had PCS three months later and still could not understand what was wrong with me.it took a locam Dr to get the ball rolling and after 2 years i got some help from the hospital but to date no medical Dr explained what was happening to me. i looked drunk when i walked, i was very confussed all the time ,head presure so bad i needed to lie down most of the time,problems with noise and been disorentated ,not sleeping, sleeping to much tired like i have never know before, anxiousity blear vision , pins and needles in my hands and feet,, disasochation ,did,t feel hungry the list go on and to date my Gp or anyone has said to me i read up on PCS and all you are feeling is part of PCS. that would have helped just knowing they understood me but not one of the DRs have ever said that, they just pawn you off with meds and a look that you are wasting their time. their behaviour has lost me my familf friends job, property , life as i knew it because if they had explained to my family what was wrong they could and would have supported me. i have short term memory lost so i don.t remember all this it has been writen down in the form of notes letters and my carers told me what has gone on.one day i hope to do something about the way i was treated or should i say my lack of treatment and neglect when i have recovered more as i am recovering slowly and save a lot of people and their familys going through the hell i have and my family.
Hello Veronica,
Thank you for posting here it is sad what you have had to go through, like a lot of others it can be almost impossible to get good medical care help and attention at all!
If you get the chance you could maybe come visitors online at our groups? There are around 1200 people all whom either have PCS all our family are loved ones of those who do….
https://m.facebook.com/#!/groups/113072042059485?ref=bookmark&__user=773659934
Hi all, Very sad how we are treated by NHS, other services and I daresay people. Because I was highfunctioning before & still manage certain things ok, people think am making it up.I had 1 fall onto ground hit back head- wish gone to be checked then, then cat knocked speaker, life downhill from there, FEb hit round head, April saved someone in a shooting. Traumatic. Lots of other incidents in the past. Now hardly go out & cannot stand noise etc.
NO. I have been bullied by everyone-NHS, Private counsellors, pple, mortgage company NRAM, try to help then bully, may be repossessed, DWP, HMRC helepd and then bully, goes on & on. As trying to heal myself naturally through, food, meditation & diff techniques we will see what futture holds. Trying to get my preteen through school but if end up repossessed thinking of moving abroad as seen there are centres in France & will check for future. I had a little fall in summer (just remembered today) & realise it may happen again that hit in head or fall. Basically gonna go where best provision is. Have had very little help & they expect you to travel across London. I think unless you have been through it they don’t know. As mine in mild pple even more judgemental and deny anything wrong etc. My preteen knows as all am a changed person & our situation has changed. Somehow gotta fight on. Good luck.
My experience of the NHS is neutral. It’s neither good nor bad. After my accident & the incident that could have cost me my job, I went to the Darenth Valley Hospital in Dartford Kent & got checked over by the duty nurse for concussion & she confirmed it. Wrote me a sick note. Went to my GPs practise & got conformation of PCS from him. He told me what I suspected I had & gave me the same information that I got up from the Internet. I’m awaiting to see a neurologist on December the 17th. The NHS seem business-like & brisk & they don’t appear to want to include complementary therapies in their programs-apart from one hospital in London according to my Craniosacral therapist. If they spent more money on craniosacral therapy & hyperbaric therapy for people with mental disorders, the results would be better, than popping stupid pills on prescription. Luckily none of my doctors at my GP surgery or at the Darenth Valley Hospital were cold, hard & synical but to them I’m just a number so it seems. Some of my colleagues at work & family think they know more than the doctors & claim I’m just aggressive & went too far.
You’re in the minority then David. I fought and fought for my basic rights and any treatment for 8 years before I have up totally… I guess it is a postcode lottery as to whether you get treated well or like crap 😙
Yes it would appear so- a postcode lottery.The system is all wrong, appears to be narrow-minded & all they want to do it seems is brush things under the carpet. I would outfit the largest GP surgery in each county with hyperbaric chambers, along with the largest county hospitals & get more Cranialsacral therapists on the NHS’s books, on a freelance basis. Practitioners could rent a consultancy room, at a surgery & perform their stuff on sufferers or have staff to operate the oxygen chambers. Sadly it’s something I doubt would happen in the UK.
Yes that’s a utopian dream here unfortunately. Best forget them if they fail to assist and go natural… I did
Yes, I think I already have done. By the way David, what is that yellowy-coloured cuboid at the top of this blog meant to be? The reason I ask is that my eyes were that colour when the trouble started.
They’re neuro axons I believe… It’s just been photoshopped a little too make it more colorful 😊