Sophia 1973 - 2005

It was a privilege to have known her.

 

by Criona Wilson (Sophia ’s mother)

 

 

 

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During one of my visits to Sophia’s G.P. she told me that Sophia had made herself ill and that I was keeping her ill and as long as I was looking after her she would never recover. She said that she wanted me out of the flat and independent carers installed. In 2001 the G.P. approached an M.E. clinic, as she said that she needed to protect herself legally. Sophia asked me to research the clinic, which would have cost the local Health Authority, thousands of pounds. They told me, when I pressed them for long-term results, that patients usually revert to the point from whence they started.

 

I spoke to a couple of ex-patients who were afraid to have their names used;

they said that this clinic was run on the lines of mental health and used a graded exercise regime, although it claimed to be a neurological clinic.

 

They also said that when patients did not get better that they were given a different diagnosis before being sent home. Sophia elected not to go to this clinic.

 

The following week he asked to see me at the hospital. He insinuated that it would not benefit Sophia if I refused, so I had no option but to comply. He told me that if Sophia refused to go to the M.E. clinic, or if she did not recover with in the following 6 months, that he would section her under the Mental Health Act. He added that if I tried to stop him, he would go to the courts to have me removed as the nearest relative. Furthermore, he said that if I did not open the door when they would come to take Sophia away, that he would call the police to ‘smash the door down’. When I asked him how much better Sophia would get by such actions he replied that it was ‘none of your business, that it was for the courts to decide’. He wanted to arrange for me to see a psychologist so that I could be made understand the good, he the psychiatrist, was doing to Sophia. I refused.

 

In July the professionals returned - as promised by the psychiatrist.

 

The police ‘smashed the door down’ and Sophia was forcibly removed and taken to a locked room with-in a ’secure’ ward of the mental hospital.

 

Despite the fact that she was bed-bound, she did not have even basic nursing care; her temperature, pulse and blood pressure (which had been 80/60), were never taken, her bed was never made, she was never washed, her pressure areas were never attended to and her room and bathroom were never cleaned. The nurse asked me to cook for her as the processed hospital food made her more ill. Sophia also had to deal with many nurses constantly going into her room and talking to her.

 

The final tests have yet to be completed,

but up to the present time the results of Sophia‘s spinal cord show....

 

”an unequivocal inflammatory changes

affecting the special nerve cell collections (dorsal root ganglia)

that are the gateways (or station) for all sensations going to brain through spinal cord.

The changes of dorsal root ganglionitis seen in 75% of Sophia‘s spinal cord were very similar to those seen during active infection by herpes viruses (such as shingles).”

 

We have lost Sophia through their actions; we have nothing more to lose. We have no fear, therefore we are free - free to speak the facts as experienced by Sophia. Whatever we say or write now will not bring her back to us. Sophia wanted to get better and live, but she needed to be able to live as a ‘free person’, not ruled by fear of being incarcerated behind the locked doors of a mental hospital. This was not allowed. In order to get any ‘help’, she had to consent that she was mentally ill; this she would not do. She lived out her beliefs. I have never in my life known a braver or more courageous person than Sophia. She was an inspiration to us all. I do believe that every parent would say exactly the same about their child who is suffering from ME. It was Sophia’s wish that her living and suffering should not be in vain, but that it would help others. Only time will tell if that will become a reality.

 

 

 

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