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We realise that barely nobody in the public health services is taking notice, or ready to tackle the hidden epidemic that is Post Concussion syndrome. Over 75% of cases are misdiagnosed & treatment is only available privately at great cost. This forum is open to anyone whom has or hasn't heard of; or suffered at some time from Post Concussive Illness. We hope to provide varied & up to date information & opinion as well as a place for sufferers & their loved ones to discuss their issues & experiences. All we ask is that you share & respect others opinions.. Retrograde, Anterograde & Post Traumatic Amnesia, Depression, Suicidal thoughts, Chronic/Breakthrough Bodily Pain, Anxiety & Panic Attacks, Severe Headaches, Mood Swings, Insomnia & other sleep problems, Personality changes, Irritability, Loss of Co-ordination & Concentration, Emotional Lability, Nausea, Confusion, Hallucinations, Fatigue, Social Behavioral Problems, Partial/Temporary Bodily Paralysis, Vision & Speech Problems & more besides are ALL symptoms of PCS & PPCS which are not medically treatable (only some symptoms are). PCS & PPCS can end careers & alter lives drastically within seconds & last anything from 3-6 months to a lifetime! Professional sports people will tell you about friends & team mates whose entire careers were wiped out with one blow to the head, never to return. Until recently treatment was thought to be non existent & is still generally unavailable (especially in the UK). However holistic & physical methods such as Bowen Technique Therapy etc are being used successfully in more progressive countries such as the USA.
*WE HAVE A PRIVATE DISCUSSION GROUP FOR PCS AWARENESS IN-DEPTH & PERSONAL MATTERS, PLEASE ASK AN ADMIN OR MYSELF TO BE ADDED TO THIS GROUP - THANKS DAVID*
About Post Concussion Syndrome in the United Kingdom…
Barely anyone in the UK’s public or health services are seriously taking notice of, or ready to tackle the hidden epidemic that is Post Concussion syndrome. Instead charities & private organizations like Headway are the only points of help & support for brain injury survivors. Over 75% of MTBI cases are misdiagnosed, only 1 in 10 Mild Traumatic Brain Injuries (MTBIs) receive hospital treatment or follow-up, this puts them at significantly greater risk of developing Post Concussion Syndrome. Treatment is only available privately at considerable financial cost to the sufferer who may not be able to meet the price; as we know most MTBI victims are in the majority younger males of lower social standing. We need to change something soon about this situation! Together we can spread awareness & get action for the forgotten sufferers of this ‘Hidden Illness’ & regain our dignity in the face of misunderstanding, discrimination & denial of basic human rights. Retrograde, Anterograde & Post Traumatic Amnesia, Depression, Suicidal thoughts, Chronic/Breakthrough Bodily Pain, Anxiety & Panic Attacks, Severe Headaches, Mood Swings, Insomnia & other sleep problems, Personality changes, Irritability, Loss of Co-ordination & Concentration, Emotional Lability, Nausea, Confusion, Hallucinations, Fatigue, Social Behavioral Problems, Partial/Temporary Bodily Paralysis, Vision & Speech Problems & more besides are ALL symptoms of P.C.S & P.P.C.S which are not medically treatable (only some symptoms are). Imagine several of those symptoms at any one time throughout your day & at random? This is partially what has led to Society brushing this complaint under the carpet or labeling sufferers as Fake! For nearly 200 years this serious & life altering disability has been generally completely misunderstood or ignored by health services, medical science, media & the majority of the public. It is however a serious disability from which sufferers encounter extremes of discrimination from all directions. P.C.S & P.P.C.S (Prolonged/Persistent Post Concussion Syndrome) were formerly known as ‘Erichsen’s Disease’, ‘Railroad Spine’ & ‘Shell-shock’ in the past, but now research has widened in progressive countries into ways of treating this previously untreatable condition. However in the UK most GPs, Doctors, Specialists, Psychiatrists & Psychologists etc have NO idea of what P.C.S & P.P.C.S are let alone how to treat a patient who has suffered 1 or more mild concussions (MTBIs). In fact many are still in the dark ages & believe that PCS is an imaginary illness. P.C.S & P.P.C.S can end careers & alter lives drastically within seconds & last anything from 3-6 months to a lifetime! Until recently treatment was thought to be non-existent & is still generally unavailable (especially in the UK). However holistic & physical methods such as Bowen Technique Therapy, Cranial Release Therapy & Hyperbaric Oxygen Treatment etc are being used successfully in more progressive countries such as the USA. The standard NHS approach to P.C.S is to ply patients with increasingly high doses of class ‘A’ pharmaceuticals & leave them uninformed on long waiting lists for therapies such as CBT etc that are of minimal use to someone who suffers the many serious symptoms. As the old saying goes “When the only tool you have is a hammer, then everything starts to look like a nail!”. Two Sides to Every Concious Brain!
7 years ago I had little idea what Post Concussion Syndrome (PCS) was, apart from that ‘Shellshock’ was something that had affected many soldiers throughout wars down through history. I NEVER thought in a million years that I could be affected by it…
6 Years ago I was affected by Mild Traumatic Brain Injury (MTBI) myself & had my world turned upside down. I couldn’t get treatment or advice anywhere, in the process losing my health, confidence, friends & home etc…
5 years ago I had been forced out of my job & was suffering the worst depression of my life, taking every medication the Drs said I should be to get better. The truth was it didn’t help I was just being drugged to keep me quiet, the fall-out was horrible…
4 years ago I was mis-diagnosed by the N.H.S Drs with Bipolar Disorder & as a result of mistreatment, incompetence, lies about my health records & mis-medication I ended up homeless….
3 years ago I was still struggling, subject to discrimination & even denied rehabilitation or a voice until one day, after the death of a dear friend (also suffering from invisible illness) I vowed to make a difference somehow…
2 years ago I had educated myself about my own illness, knowing more than any of the Drs I met. I realized that there was nowhere on the worldwide web where people could go to find information, support or advice from people who’d been affected by PCS.
1 year ago my the world saw the first ever Post Concussion Syndrome Awareness Day on June 24th which was a success in attracting attention worldwide, this was just the beginning…
Today I can look back & learn from that roller-coaster ride, enough to give others hope & an ear to listen…
Since then our cause has reached out to members on every continent, informed both the newly diagnosed & those who’ve struggled for years. we’ve been taken as a point of reference for professionals & proposed national petitions for greater awareness in the public arena. Most importantly given much needed support & comfort to sufferers. Since 2010 a steady surge in action began via the internet & free social sites such as Twitter & Facebook, this led to people coming together to share common experiences & problems associated with having Post Concussion Syndrome (P.C.S) or Prolonged or Persistent Post Concussion Syndrome (P.P.C.S). These people are spread out across the world in locations from Canada, USA, Caribbean, Europe, Africa, Australasia & the Far East to name a few. It became clear that some countries were well ahead of the game, USA, Canada, New Zealand for instance where heavy contact sports such as NFL had led sports universities to develop & research new effective ways of handling this far from new condition. Some countries like the UK on the other hand were behind the rest of the world & were even regressing backwards in both attitudes to sufferers & willingness to progress towards treating people through the N.H.S. Well, I can say from first hand experience that I am in one of those unlucky enough to be suffering in the UK, where we P.C.S sufferers fall through all the cracks in the system, not even clearly labelled (we British love to label things black or white, good or bad, a dualistic heaven!) as a ‘Mental Health’ problem, undermining the seriousness of P.C.S as a complex Neuro-Psychological disorder that ruins & often indirectly ends lives! All this has to change & our health authorities blinkered denial of the size of the epidemic must be left behind in place of progressive new treatments which ARE available & DO work for patients in many countries. Denial, ignorance & excuses are helping nobody to tackle P.C.S & P.P.C.S long term, but sadly that is all that is currently available on the N.H.S! My information comes from inside the N.H.S & directly from its own employees, doctors, nurses & specialists among others. Since 2006 I have learned of shocking practices, neglect of care & tragic countless stories of people left to rot on sickness benefits system, simply because the system refuses to admit that it needs patient driven opinion on how best to implement the right treatment paths & procedures to ALL P.C.S patients. I’ll reveal through personal experience & that of others simply how things are with P.C.S in the UK & share with you much more positive stories of Hope, Inner Strength & Survival, as well as sharing news & developments in modern treatments available, where to find help if you need some, how to cope with British Beaurocracy & much more…. Thanks for reading & don’t forget to tell a friend too please? Namaste, David Bottomley (Founder Post Concussion Awareness Worldwide)