Why CO-Awareness was formed!- Lynn’s Story

My name is Lynn Griffiths and I am a widow with four children. I'd like to share my Carbon Monoxide Story with you. I was born in 1958 and since the age of two months I have suffered from Asthma. Due to the fact that my Asthma was aggravated when I retired for the night, I slept with a small window open. I am a Non Smoker and have always had a dislike of alcohol. I now suffer with continual headaches, sickness, dizzy spells, poor vision, memory loss, pins and needles in my finger tips, racing pulse, high blood pressure, anemia, eczema, arthritis in my back and weak bladder control. On June 7th 2005 during a visit to Guy's Hospital I was informed that I now have Cervical Spondylosis. Then in the October of 2005 I received a letter from my psychologist saying that my cognitive difficulties are sufficient to be handicapping in every day life.
CO Awareness Week 1
In 1988 my late husband Albert started to suffer from a bad chest. We considered it advisable to move to Runcorn along with our two young sons (Paul age three and Gavin, who was one and a half). This way we could be nearer to my family. I have always been safety conscious. I think once you have family safety becomes your number one priority. For this reason I had no hesitation in taking out a "Three Star Cover" offered by a gas company We had a safety check on the gas fire and cooker when we first moved in. We also requested servicing of the fire by their qualified engineers.

When my eldest son Paul started school, it was my belief that he had settled in and was doing well in his lessons. It was not until he was eleven years old that this belief was shattered by a phone call from his High School. My son had been making himself vomit at school and it had been going on since he was eight or maybe younger, he found it hard to remember how long exactly. Paul underwent professional counseling and I was also referred for counseling, unfortunately due to other pressing commitments I had to decline the offer. Paul is now twenty-one now and suffers from Tinnitus, Irritable Bowel Syndrome, severe headaches, nosebleeds, pins and needles in his fingers, a very poor immune system and depression. All these ailments are associated with damage caused by carbon monoxide poisoning.

In 1989, I fell pregnant again with my third child and only daughter Kelly. This time my pregnancy was plagued with medical worries. Doctors were alarmed when I failed to put on any weight during my pregnancy. My blood pressure was high and my pulse was always racing.  When I voiced my concerns, I was told some people have racing pulses and not to worry unnecessarily. Numerous tests were carried out but nobody was able to confirm what was causing all these problems. The hospital issued me with a kick chart to monitor my babies’ kicks but I never managed to record ten kicks a day. This baby very rarely moved and on numerous occasions I left the hospital in tears, concerned for by unborn child’s health. During my previous pregnancies the boys were always sticking their arms and feet into me, they were never still.

On 12th August 1989, I gave birth to my 3lb 6oz daughter. She was breach and I was advised to have a Caesarean Section, I refused, as I was aware I would require longer recovering from the procedure and I had two other children to care for. Kelly was taken straight to the "Special Care Unit”, as she was eight weeks premature. When she was allowed home three weeks later she was the size of a "Tiny Tears Doll". People would come up to my husband and I in the street and enquire, "Is that a doll or a real baby". For the first twelve months of her life she suffered from Broncilitus and went on to suffer from Asthma. She would catch a virus every winter and would constantly bring up her feeds. Kelly is now sixteen and suffers with headaches, pins and needles in her fingers and learning difficulties.

In 1990, my second son Gavin started school. He never seemed to perform well in his lessons and one teacher remarked in a letter to me "Gavin is often found wondering aimlessly around the classroom, unsure of what he was meant to be doing". She stated, "It seems like the message gets lost on the way to his brain." Disturbed by her remarks I took Gavin to the doctors, he informed me that these observations were a sign of behavioral problems. Gavin was given extra help at school but nothing seemed to help. Gavin was an extremely clumsy child and would regularly run into walls and fall over objects. We were forever saying "Gavin what have you done now". He has always suffered from Asthma and each winter he would be diagnosed with one virus after another.

The winter months were very stressful and spelt bad news for all the family. The children  were always ill with one virus after another and they all involved a lot of vomiting. My definition of Virus took on a new meaning. It meant "We can't find what is causing this sickness so we'll call it a virus”. My husband dreaded the winter as his chest was always more painful in the cold months. Doctors confirmed that they often found that this was the case in other patients. In 1996 I was delighted by the news that I was pregnant again, I had always wanted another child. Unfortunately my happiness was short lived. My pregnancy became a constant round of extra medical appointments, extra scans, extra blood tests, extra everything. The midwife was even visiting me at home three days a week. At one point they feared my baby might be born with Cystic Fibrosis or a bowel disease. I dreaded my hospital visits, always concerned about what I might hear next, they always ended in tears. Before the birth doctors informed me that as soon as the baby was born it would be require tests to be carried out immediately.

On June 28th 1996, I was admitted to hospital with high blood pressure. The midwife had grown concerned for the safety of both my baby and me. My son Craig was born the next day (June 29th), three weeks premature. I recall little of the actual labor as I was so tired. I slept through most of the labor pains and woke up just as the need to push became stronger. My only pain relief came from an injection, which included something to stop me feeling sick. My husband could not believe it when I rang up an hour after the birth to tell him he had another son. Sadly our joy was to be short lived and later that day Craig was rushed to "Alder Hey Children's Hospital". He would not take his feed and tests on his bowels had to be carried out. We visited the hospital every day, afraid that we were going to loose him. On one of our visits I remarked to the nurse that Craig's breathing sounded different from normal, I know it sounds a strange thing to say but his breathing sounded the way I felt he was breathing  during my pregnancy. Tests were due to be carried out the next day and we still had our other three children to look after at home so we left. We had just put the key in the door when the phone rang. It was the hospital phoning to let us now Craig had been rushed into Intensive Care. We immediately headed back to the hospital where medical staff was still trying to stabilize him. He had tubes and needles sticking out of every part of his body, even his head. It was heartbreaking to see him like that and feel so helpless. Six days later an operation was carried out for a condition known as Coarctation of the Aorta. We were delighted when we finally got the go ahead to take him home. Shortly after his return home the main artery to his heart started to shut again and he had to return to hospital to have two catherizations to open the valve up. He spent all of August in hospital.

Finally Craig was allowed home but doctors still wanted to carry out yet more tests. They  were concerned that he might have Arthritis in his hip, which is very painful. Craig was a very sick baby. You could feed him one minute and the next minute the whole feed would come back like a fountain, so he would need feeding again. The doctors reassured me that he would grow out of it but it continued until he was four years old. Craig is now nine years old and receives regular check ups on his leg at Alder Hey Hospital. His right leg is shorter than his left and he requires a 5cm build up to be added to all his footwear. Still, he is a happy child who rarely complains of pain (even though it is painful). He never lets it get him down or restrict him from joining in sporting activities with his friends. Doctors will eventually carry out a series of operations to correct his leg, the first of which is scheduled for April 2006. Craig also has learning difficulties and receives extra help at school.

In October 1998, more than ten years after we moved into our house in Runcorn we realized that we really required an extra bedroom and downstairs toilet. My husband’s bad chest had grown much worse and he had breathing difficulties when climbing the stairs. It was therefore decided that a house move was required. I decided a new gas fire would be more appealing to potential buyers so I purchased a new 'Valor" fire. I considered British Gas to be the experts when it came to fitting gas appliances and had no hesitation in arranging for it to be installed by them. The fire worked fine until the end of 1998, when we had strong winds over the Christmas period and into the New Year. The fire started to cut out while it was alight, so I rang British Gas. They told me to ring 'Valor" and finally on January 22nd a Valor engineer arrived. He checked the fire and told me that the fire itself was fine; the problem was with a blocked flue and a dangerous spillage into my living room. He said he had no option but to disconnect the fire and urged me to call British Gas and tell them of his findings. I rang British Gas immediately but just got passed from pillar  to post and ended up getting nowhere, it was so frustrating. In desperation I decided to ring the gas shop where I purchased the  fire and asked them to sort things out. A British Gas engineer was dispatched to check the fire out and he confirmed that the fire was indeed unsafe and that it should remain disconnected. Days went by and still we heard nothing from British Gas. I made numerous calls to discover what was being done about the problem but they all proved fruitless. Eventually I managed to speak to the engineer who had called and he informed me that he was compiling a report on the case. I waited yet another week before I finally got to speak to someone who could tell me what was happening. They informed me that flue engineers were being dispatched that very day. They took loads of rubble from my flue (some in really large pieces). British Gas considered an offer of £100 reasonable compensation for their incompetence, but I   was disgusted by their offer and promptly turned them down.

In November 1999, nearly twelve months after the blocked flue was discovered my husband died. I was left alone to bring up four children, the youngest of which was three years old. Due to the fact that my husband had seen the doctor within the last 10 days of his life 'No' post mortem was required. I've recently been told by experts on Carbon Monoxide Poisoning that my husbands’ death could possibly be linked to CARBON MONOXIDE POISONING. Unfortunately post mortems carry no tests for carbon monoxide poisoning therefore this could never have been confirmed. It is my opinion that CO testing should be carried out on all post mortems and especially those under a doctor ten days prior to death.

I believe that there are many victims who are suffering from CO poisoning and yet are unaware of it. Doctors often mis-diagnose CO as food poisoning, flu or a virus. My research has found that there is very little information and support available in Britain. The NHS is hesitant in offering any level of support to CO victims and NHS Direct provides 'NO' sources of information to help victims.
CO Awareness Week 2
Due to the fact that there was so little support and advice available in connection to CO POISONING I decided to set my own charity called CO-Awareness. Trying to get funding is proving a real struggle but I remain confident that our difficulties are not insurmountable. We are the only Carbon Monoxide Charity in the North and one of only two Carbon Monoxide Charities covering the whole of the U.K. Lynn Griffiths is a fighter and is here to "STAY". Nobody should have to experience the feeling of helplessness my family and I have had to endure. I am determined that I will make a difference by supporting all Carbon Monoxide Poisoned Victims. CO-Awareness will never turn anyone away who needs our help or support.

I met a lady poisoned by Carbon Monoxide earlier this year. She told me she felt so isolated and alone as nobody would believe the way she was feeling (this had been going on for nearly six years). She had been told repeatedly by doctors her symptoms were all in her head. This was not the first victims to inform me that doctors had dismissed them as neurotic time wasters. I told her I would write to her G.P and get her referred to Guys Hospital in London, under the care of one of their doctors. Her G.P admitted to knowing nothing about Guys but agreed to write to them enclosing the letter I had sent to him. I’m pleased to say this lady was seen very quickly by Guys Hospital. She rang me on her return to Wales in tears, she said ‘Lynn I can't thank-you enough, that’s the first time I’ve ever come across a doctor who treated me as a human being, The doctor seemed disgusted by the way other doctors had treated me’.

My research has shown that GP’S show very scant or non existent knowledge on CO its symptoms or treatment. At ‘Carbon Monoxide Awareness’ our constitution sets out our aims and objectives. We aim to help educate the public, medical personnel, heating contractors, utility contractors, and manufacturers of heating and ventilating appliances, house builders, building contractors, government agencies, policy-makers, architects and engineers about the effects  of carbon monoxide (CO) poison. Our objective is to give Carbon Monoxide poisoning a much greater profile and alert everyone to the steps that can be taken to avoid CO POISONING.

I recently asked our local P.C.T (Prime Care Trust) to carry out an audit of the seventeen  local GP’s practices to see if they received information on Carbon Monoxide Poison: The Forgotten Killer from the D.O.H dated February 2002. I was disturbed by the replies: One remembers receiving the information, three practices failed to answer leaving the other thirteen saying they don’t recall receiving the information. This proves information on Carbon Monoxide Poison is not getting through to our doctors from the Department of Health. I have now contacted N.H.S Direct in Manchester to ask them to give carbon monoxide victims our contact details.

•    We want to see high profile campaigns in the media e.g. prime time television, newspapers and cinema and leaflets in all doctors surgeries and in all gas bills highlighting CO dangers, warning signs and what preventative measures we can take.

•    We want to see every building in the UK fitted with Carbon monoxide monitors and for it to be an offence for new building not to be fitted with them as standard.

•    We want to see the same INVESTMENT given to Carbon Monoxide Monitors as is Currently given to advertising the need for Smoke Detectors e.g. Showing the devastating effect on the victims and bereaved families.

•    We want the government to put greater investment into the NHS to tackle the acute need for resources to educate trainee doctors on Carbon Monoxide and secondly to keep them informed on treatment and research being carried out.
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