Clinical abuse of Epilepsy Suffers
I am 67 years old and a ex teacher, therapist and counsellor.
All of that experience grew out of a mental health diagnosis of personality disorder at the age of 17 way back in the 1960.
The stigma of that diagnosis was bad enough always having to lie about missing months in employment and my assumed strange behaviour. Its hard being a gay man in todays straight society.
For over 30 years I had been going to medical professionals telling them I could hear voices and had visions and saw dead people
I had dearly conflicts over religion and the frequent request that I should give myself to Jesus that was my solution.
I took to Spiritualism and saw the notion of reincarnation a more positive rejuvenation to merely just being saved or excluded as I was not perfect.
Perfection is a manufacture of the NHS and Society .
We have to be the best that we are.
Having any disability was frowned upon and having a sexual deviancy in a so called embracing society even more so. The Christian ethic of perfection gone too far.
After fighting for Equality rights since 2005 I convinced a Doctor who witnessed a fit to send me to a specialist at London's renowned central London Hospital.
After extensive test it was diagnosed that I had scarring on my hypothalamus which was causing the epilepsy.
Miraculously I was now relabelled Organic Personality Disorder and place on 2000mg of Keppra. This in itself causes massive side effects, vision, hearing impotency and general tiredness and lethargy, It also make me very agitated and
now have a further label of violent and abusive.
This renowned clinic in London have refused to see me as a patient due to this so called inability to maintain a therapeutic alliance which is almost as bad as being alienated due to my epilepsy syndrome and labelling.
Being ostracised within the NHs for any particular diagnosis or symptoms further alienates you and excludes you from all services that are rightfully yours.
We are told it is " Your NHS"?
I have had no supervision for the past two years in epilepsy care and four different Trusts and Consultants that I visited stated that they could not assist me and that I had to return to the specialism of the central London hospital
Whether it is Epilepsy, personality disorder or just falling foul of the left wing controlled NHS you soon find yourself excluded from all services if you are deemed to be a difficult patient.
It reminds me of pre Victorian times when you had to fight or die for health care.
Even on 2000 mg of Keppra I am still having breakthrough fits and acute arthritis in all of my joints as a side effect.
I have had 37 different G.P.s over the past 20 years and now none of them will take me on as a patient. I currently have no G.P. only emergency services to supply medication on a weekly basis. They cannot make referrals to any Consultant for any condition.
A+E can not refer for Epilepsy symptoms and can only support you until the phase passes.
I suppose the moral of my story is around the inhumane aspect of caring professionals. For 45 years I contributed taxes to the NHS and now I am being treated like dirt in spite of my many ageing related conditions including that of misdiagnosed Organic Personality Disorder.
As a word of caution. having also a failing heart bypass and many acute admissions the first they do is pump you with morphine.
I believe that it was this that caused my brain scarring and subsequent Epilepsy.
I am sorry it is not a brave story of survival with a condition that you all may be aware of but one of the pitfalls of the failures of services towards people with Epilepsy .
If I have had this condition since childhood and the initial personality disorder label diagnosis at age 17 with a bit of homophobia thrown in might not have blighted my life.
Now at 67 I am having to battle with the health Trusts and the Ombudsman to get a fairer deal and justice for the maltreatment of so called caring professionals.
That is my story which may differ from positive views of other users.
Thanks for listening.