Epilim, poetry, love, angels
BETRAYAL OF THE TRUTH, A POEM BY JOAN BYE
329
Helenor, the twelve-year old daughter of joan and the late Deek Bye, was subjected to a medical experiment such as is carried out in laboratories on rats and mice. Helenor Bye from Porthcawl, died in University Hospital Wales in 1978 after a catalogue of clinical failures in Bridgend Hospital. With remarkable courage and undeterred since that fateful day some 44 years ago, Joan has campaigned ceaselessly to expose the truth about the suffering endured by their daughter before she died so needlessly. What makes Helenor’s story doubly outrageous, is that the evil conspiracy of lies, deceit, inaction and cover-up was perpetrated by the NHS, Police, Judiciary, General Medical Council, Coroner, MPs and Government. Their intent? To conceal the real truth of children’s deaths from the general public, as well as the horrible side-effects of big business drug companies. That Helenor’s death occurred 44 years ago does not undermine the case. In fact it reinforces the urgent need to expose the rot which has eaten into our NHS, Social Services, Judiciary and government. For those that wonder at the lies, sleaze, corruption, and moral depravity that pervades Westminster and our MP’s of all parties, Helenor’s case represents the roots of the trouble. Cover-ups permitted years ago, are now coming home to roost in today’s thoroughly corrupt system.In July 1977, 12 year old Helenor was referred by her GP to Dr Trefor Jones paediatrician, suffering from a urine infection. She was given an Intravenous Pyelogram (IVP) at Bridgend Hospital. This technique introduces a ‘contrast material’ into the blood stream to provide a clear picture of organs on X-ray.
Unknown to Helenor’s parents, IVP can pose a risk for patients from adverse reactions to the contrast material. In severe cases this can present as ‘anaphylactic’ shock. This violent reaction to a substance introduced into the body (for some people a bee sting can trigger this response), can cause dangerous symptoms and even death in a small number of susceptible. The family were not warned of any side-effects.Helenor completed the treatment and quickly felt unwell. Told to sit quietly for 30 minutes, she was then allowed to leave. In the car on the way home, she suffered hallucinations and went into a coma.Close to their GP, the parents immediately called for assistance and were told to take Helenor home. Their GP David Parry was supposed to visit but he didn’t. In desperation the Byes took Helenor back to Bridgend Hospital, and from then on they entered a nightmare, in which their daughter would later die. The cover of this little girl’s medical case notes says it all…..it incorrectly records her date of birth as 1901, making her 77 years old at the time.
Helenor initially spent 5 days in Bridgend and was treated by Dr Jones with Mogadon and Valium. These drugs did nothing to heal her, but just masked the serious effects of her IVP symptoms. Discharged with no proper diagnosis, Helenor returned home. Within 24 hrs she was again hallucinating and the Byes took her back to Bridgend where she was admitted for a further 5 days. Dr Jones then made a diagnosis of epilepsy, with a recommendation for the drug Epilim.
This diagnosis came out of the blue for the parents, and they demanded an EEG, or brain scan, to confirm epilepsy.According to her parents, Helenor had never suffered from epilepsy. As the Manager of a Day Centre, catering for adults with learning difficulties, some of whom had epilepsy, Mr Bye was well informed of this condition, and therefore the Byes remained adamant that Helenor never displayed any symptoms of epilepsy prior to ‘treatment’ with Epilim at Bridgend.Unknown to Mr and Mrs Bye, Dr Jones had already carried out an EEG on Helenor, during her first admission to hospital. Far from showing epilepsy, the test showed encephalitis. An inflammation of the brain almost certainly connected with Helenor’s adverse reaction to the original IVP contrast material injected into her. Dr Jones however, hid the actual result of the EEG and denied Helenor the correct treatment. The family were only to discover the true EEG result (no epilepsy) some 24 years later when they finally obtained their daughters medical records.
After stalling and lying about results from two further EEG tests, the concerns of her parents were bulldozed aside by threats from Dr Trefor Jones….If the parents did not agree to his diagnosis of epilepsy and the prescription of Epilim, then Helenor would be taken into care of the local authority”.Frightened at the prospect of Helenor being taken, they reluctantly gave in. Prescribed 200 mg Epilim four times per day, 12 year old Helenor Bye died in 1978 just 3 weeks before her 13th birthday.Over a period of some 8 months, and despite a monthly meeting with Dr Jones, Helenor suffered horrible symptoms including aggression, lethargy, nausea, hallucinations, gastric irritation, body tremors, confusion, hyperactivity, behavioural disturbances, vomiting and incontinence. Joan and Derek Bye, have no doubt that Helenor was killed by the side effects of the drug Epilim.With her parents desperately trying to get a second medical opinion on their daughter, Dr Jones was able to orchestrate a conspiracy to cover up his clinical blunders. Supported by the NHS system he blocked discussion with other specialists and transfer to other hospitals, removed medical records, and accused the parents of attention seeking. He even cruelly referred Helenor to a Child Psychologist, Dr Margaret John, having accused the little girl of making up her illness.Despite these actions, nobody would listen to, help or support Mr and Mrs Bye in their increasingly desperate search for medical help. On the contrary, the ‘system’ conspired and closed up against them.Mr and Mrs Bye appear very ordinary people. But underneath they are loving parents and tenacious campaigners who have refused to give up in their efforts to expose the truth about the clinical failure, lies and cover-ups within the NHS, General Medical Council, Courts and MPs. Over a number of years, they have succeeded in getting the data-sheet on the Epilim amended 3 times.In an emerging court case which was originally to have been held in October 2008, 140 families had apparently claimed that Epilim taken in pregnancy damaged their children. They alleged that some 37,500 children have been damaged and it is now reported as the new thalidomide.Meanwhile every avenue of exposure for Mr and Mrs Bye is still blocked by threats, intimidation and silence and Helenor’s body parts are still missing in the NHS.At Helenor’s inquest the coroner found no evidence and out ruled epilepsy.
After the inquest, in the middle of the night, feeling distressed at the outcome and fallacy that just took place, Joan's mind was filled with a complete poem about the whole story. She wrote it all down at one sitting. This moving poem sums up quite eloquently the entire tyrannical system that governs us, particularly evident over the past two and a hald years.
Unknown to Helenor’s parents, IVP can pose a risk for patients from adverse reactions to the contrast material. In severe cases this can present as ‘anaphylactic’ shock. This violent reaction to a substance introduced into the body (for some people a bee sting can trigger this response), can cause dangerous symptoms and even death in a small number of susceptible. The family were not warned of any side-effects.Helenor completed the treatment and quickly felt unwell. Told to sit quietly for 30 minutes, she was then allowed to leave. In the car on the way home, she suffered hallucinations and went into a coma.Close to their GP, the parents immediately called for assistance and were told to take Helenor home. Their GP David Parry was supposed to visit but he didn’t. In desperation the Byes took Helenor back to Bridgend Hospital, and from then on they entered a nightmare, in which their daughter would later die. The cover of this little girl’s medical case notes says it all…..it incorrectly records her date of birth as 1901, making her 77 years old at the time.
Helenor initially spent 5 days in Bridgend and was treated by Dr Jones with Mogadon and Valium. These drugs did nothing to heal her, but just masked the serious effects of her IVP symptoms. Discharged with no proper diagnosis, Helenor returned home. Within 24 hrs she was again hallucinating and the Byes took her back to Bridgend where she was admitted for a further 5 days. Dr Jones then made a diagnosis of epilepsy, with a recommendation for the drug Epilim.
This diagnosis came out of the blue for the parents, and they demanded an EEG, or brain scan, to confirm epilepsy.According to her parents, Helenor had never suffered from epilepsy. As the Manager of a Day Centre, catering for adults with learning difficulties, some of whom had epilepsy, Mr Bye was well informed of this condition, and therefore the Byes remained adamant that Helenor never displayed any symptoms of epilepsy prior to ‘treatment’ with Epilim at Bridgend.Unknown to Mr and Mrs Bye, Dr Jones had already carried out an EEG on Helenor, during her first admission to hospital. Far from showing epilepsy, the test showed encephalitis. An inflammation of the brain almost certainly connected with Helenor’s adverse reaction to the original IVP contrast material injected into her. Dr Jones however, hid the actual result of the EEG and denied Helenor the correct treatment. The family were only to discover the true EEG result (no epilepsy) some 24 years later when they finally obtained their daughters medical records.
After stalling and lying about results from two further EEG tests, the concerns of her parents were bulldozed aside by threats from Dr Trefor Jones….If the parents did not agree to his diagnosis of epilepsy and the prescription of Epilim, then Helenor would be taken into care of the local authority”.Frightened at the prospect of Helenor being taken, they reluctantly gave in. Prescribed 200 mg Epilim four times per day, 12 year old Helenor Bye died in 1978 just 3 weeks before her 13th birthday.Over a period of some 8 months, and despite a monthly meeting with Dr Jones, Helenor suffered horrible symptoms including aggression, lethargy, nausea, hallucinations, gastric irritation, body tremors, confusion, hyperactivity, behavioural disturbances, vomiting and incontinence. Joan and Derek Bye, have no doubt that Helenor was killed by the side effects of the drug Epilim.With her parents desperately trying to get a second medical opinion on their daughter, Dr Jones was able to orchestrate a conspiracy to cover up his clinical blunders. Supported by the NHS system he blocked discussion with other specialists and transfer to other hospitals, removed medical records, and accused the parents of attention seeking. He even cruelly referred Helenor to a Child Psychologist, Dr Margaret John, having accused the little girl of making up her illness.Despite these actions, nobody would listen to, help or support Mr and Mrs Bye in their increasingly desperate search for medical help. On the contrary, the ‘system’ conspired and closed up against them.Mr and Mrs Bye appear very ordinary people. But underneath they are loving parents and tenacious campaigners who have refused to give up in their efforts to expose the truth about the clinical failure, lies and cover-ups within the NHS, General Medical Council, Courts and MPs. Over a number of years, they have succeeded in getting the data-sheet on the Epilim amended 3 times.In an emerging court case which was originally to have been held in October 2008, 140 families had apparently claimed that Epilim taken in pregnancy damaged their children. They alleged that some 37,500 children have been damaged and it is now reported as the new thalidomide.Meanwhile every avenue of exposure for Mr and Mrs Bye is still blocked by threats, intimidation and silence and Helenor’s body parts are still missing in the NHS.At Helenor’s inquest the coroner found no evidence and out ruled epilepsy.
After the inquest, in the middle of the night, feeling distressed at the outcome and fallacy that just took place, Joan's mind was filled with a complete poem about the whole story. She wrote it all down at one sitting. This moving poem sums up quite eloquently the entire tyrannical system that governs us, particularly evident over the past two and a hald years.
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