Lynn's story - part two of her devastating experience with carbon monoxide
The Valor engineer checked the fire and told me that the fire itself was fine; the problem was with a partially blocked flue and dangerous spillage of carbon monoxide 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 one person to another ending up precisely nowhere. In desperation, I decided to ring the shop where I purchased the fire and ask 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 rubble from my flue - some of which were really large pieces. British Gas considered an offer of £100 to be reasonable compensation, but I was appalled both by the incompetence which had put my family in direct danger, and by the poor standards of service by which they dealt with the problem.
I was in no mind to accept and turned them down. I was at a loss at what to do when I saw one of those compensation help line television adverts. I phoned and they put me in touch with a solicitor.
The first thing he did was to send me to a GP in Liverpool who had knowledge and experience of CO problems and he diagnosed the entire family as suffering from CO poisoning. This diagnosis was later confirmed by Guys Hospital in London.
Knowing what I know now I often wonder if by doing this earlier we could have done more for my husband Albert and saved him from some of the pain and discomfort he suffered before he died in November 1999. 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 or exacerbated by this. Unfortunately post mortem's 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 mortem into suspicious deaths.
I am certain that there are many, many victims who are suffering from CO poisoning whilst being completely unaware of it. Doctors often misdiagnose CO as food poisoning, flu or the perennial favourite: 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 whatsoever.
So now I was left alone to raise four children the youngest of which was three years old. What I needed most of all was information and support but no matter where I turned there seemed to be no one person or organisation that could either provide this or point me in the right direction. Faced with this situation and the fact that there was so little support and advice available on
CO poisoning, I decided to set up CO-Awareness. Funding has proved a real struggle but I remained confident that the difficulties were not insurmountable.
We are the only Carbon Monoxide Support Group in the North and one of only two Carbon Monoxide bodies covering the whole of the UK obstacles constantly keep appearing but I am a fighter and here to stay. It is my firm conviction that nobody should have to experience the feeling of desperation and helplessness that my family and I have had to endure. I am determined to make a difference by supporting all poisoned victims and by raising overall awareness of these terrible effects.
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 because nobody would believe the way she was feeling - and this had been going on for nearly six years. She had been told repeatedly by doctors that her symptoms were 'all in her head'. She was not the first victim to tell me that doctors dismissed them as neurotic time wasters. I told her I would write to her GP in a bid to have her referred to Guys Hospital in London, to be examined by one of their doctors. Her GP 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 and later rang me in tears upon her return to Wales. "I can't thank you enough" she said, "that's the first time I've ever come across a doctor who treated me as a human being, and he seemed quite dismayed by the way other doctors had treated me". My research has shown that rank and file GPs have scant or no knowledge at all about CO poisoning, its symptoms or treatment.
The constitution of CO-Awareness clearly 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.
We want to see high profile campaigns in the media and informative leaflets in all doctors' surgeries and in all gas bills which highlight the dangers of CO, explain the warning signs and the preventative measures that can be taken.
We want government to put greater investment into the NHS to tackle the acute need for resources to educate all doctors on Carbon Monoxide and the other products of combustion and keep them informed on what treatment and research is being carried out. Quite apart from the devastating family and personal consequences, CO poisoning is costing the country dearly in terms of resources and lost working days in both diagnosed and, probably more often, misdiagnosed cases.
We also want to see fair play in terms of recognition, justice and where appropriate, compensation for those poisoned by CO and other products of combustion. However this is all but impossible while there are no expert witnesses in the products of combustion. We have been told, for example, that the establishment is well aware that victims are at a significantly higher risk of developing cancer for as long as 25 years after poisoning.
In 2005 I asked our local Prime Care Trust (PCT) to carry out an audit of the seventeen local GP practices to see if they received Carbon Monoxide Poison: The Forgotten Killer issued by the Dept of Health, dated February 2002. The results were very disturbing. One remembered receiving the information, thirteen either didn't receive the information or didn't recall receiving it and three failed to reply at all. This demonstrates the fact that information on Carbon Monoxide Poisoning is simply not getting through. I have now contacted N.H.S Direct in Manchester to ask them to give all diagnosed carbon monoxide victims our contact details.
The court case on Wednesday 16th July 2008, my son Craig and I stood before a judge as victims of carbon monoxide poisoning and of the legal system that I felt had failed us. I was faced with a dilemma: do I accept £1,250 (equal to less than two seconds of the profits earned by British Gas this year) being offered as compensation for the devastating effects CO poisoning has had on my son, some of which may not even have manifested themselves and could appear later on in his life? To put this in context, the sum of £1,250 is what one might expect to be awarded for a case of whiplash with full recovery. It upset me deeply that the courts placed such little value on my son's ongoing medical conditions, which are going to continue to cause him pain and suffering for his entire life.
In my heart I wanted to say no, but with only a widowed mother's allowance and tax credits to live off and faced with the possibility of paying court costs, I had no choice. We were entitled to legal aid, but I discovered my lawyer was not acting in the best interests of my son. I was advised to discharge him by our barrister. Shortly after his dismissal I was informed that my son's legal aid had been withdrawn on the advice of our dismissed lawyer. If I had decided to take this case further we could be liable to pay costs, which could run into thousands.
Continuing entailed the very real possibility of losing my home to cover these costs. What really frustrates me is the fact that British Gas can make mistakes that can cause such pain and suffering and yet get off so lightly. If I had poisoned my son, I would be facing a long stay in prison and my name plastered over the tabloids.
British Gas had repeatedly failed to produce a copy of the RIDDOR report, which should have been completed following notification of our exposure. They also failed to produce a copy of the report that documented work carried out by flue engineers in January 1999. By withholding these vital documents, my family's legal cases were inexcusably hampered. I was informed that the reason I couldn't see these forms was my twelve year old son was still in litigation. My MP felt this not at all acceptable and informed British Gas that I have the right to see the documentation.
I believe my youngest son was very badly let down. Both my medical and legal professional representatives failed to recognize that one of the most common effects of CO poisoning is brain damage, which leads to learning difficulties. This will undoubtedly limit his career opportunities. His older brother has already experienced these problems for many years.
With only a few notable exceptions, those in medical profession just don't seem to realise how ill you become with CO poisoning. Many seem to prefer to think it's 'all in your mind'.
Unfortunately we are still struggling to make ourselves heard. We are let down by the medical profession who seem to have very little or know understanding of the products of combustion. Guys Hospital says my son's learning difficulties are probably caused by his exposure to CO; unfortunately this report wasn't in a form suitable for legal proceedings. I have had articles published in both Nurse in Practice and The New Generalist. These articles explain the symptoms of CO poisoning which include memory problems, induced epilepsy, partial paralysis, blindness and peripheral palsy. Children are often thought to be lazy and uninterested when feeling drowsy at school, but in some cases - (possibly many cases - we simply don't know) the cause will be CO poisoning.
However it's not all bad news. Last October the Department of Health said it would invest half a million pounds into medical research for CO poisoning. The Association of Personal Injury Lawyers has said they were looking at taking the next steps in their Carbon Monoxide awareness campaign. Solicitors are increasingly contacting CO-Awareness in hope that we can recommend medical experts willing to provide medical reports for court cases.
Unfortunately I can't make such recommendations because the medical support just isn't there - yet.
My own story started 20 years ago and despite making Ministers and Senior Civil Servants aware of the dangers of CO poisoning over the past four years, there is still no adequate medical support for victims and the medical profession is effectively ignorant of the effects of this, the most common of poisons.
The irony of cases like ours is that we pay for annual servicing and safety checks on our gas appliances to keep our families safe. We ensure that the company servicing our appliances are properly registered. We put our faith in these registered engineers and assume they are checking everything required including flues for competence. When we complain about being poisoned and demand to know what went wrong, the servicing providers - who grow rich on our payments - use and manipulate an inadequate legal system to defend and hide their failure and to avoid any examination of their duties, whether moral or statutory.
Some of the compounds and chemicals from combustion poisoning can stay in our systems for 25 years or more. That was the reason I asked my solicitor if he could obtain a copy of the engineers report. I could not believe it when he showed me the warning notice that I had provided to him back in January 1999 which said 'spillage of products into lounge'. I was busy bringing up a young family and nursing a dying husband, I hadn't understood the implications of the notice. To the lay-person, the wording suggests that some soot had fallen onto the fireplace, not that we were breathing poison gas. It was at this point that I realised I had been relying on someone to defend my position, but they were unable to make the crucial distinction between a warning notice and an engineers report. How could he even begin to understand the complexities of incomplete combustion, the requirements of the gas regulations or the myriad other factors involved in this case?
Since finding out about the other chemicals my family and I had been exposed to as a result of having full blood evaluations, I wanted some questions answered. I had seen a GP earlier in the year and asked to be referred to a toxicologist who specialised in chemical poisoning.
As it seemed to be taking forever to achieve anything, I wrote to my PCT asking for assistance in getting a referral. We found two toxicologists but they didn't seem interested so I asked to be referred to the SAS centre in Birmingham. The PCT agreed and my GP wrote to the centre asking for a full family referral. My GP received a reply which indicated that they too lacked interest in the problems we faced, so yet another door was closed in our faces.
Many of our victims have had to have blood tested privately because the system appears to have no mechanism for doing this as a function of the provisions available under the National Health scheme. The results of these tests are alarming in their similarity even though the victims are from disparate social backgrounds and geographical locations. The one thing they all have in common is that they were all exposed to the products of combustion.
Craig's case was brought to the court when he was only two and a half years old, and took nine years to complete. Despite the fact that medical evidence was produced showing him to be damaged in many areas including his brain, the lawyer allowed the statement that CO poisoning does not cause brain damage to be entered on the record.
Such was the level of his competence in the matter that I was advised to ask for his removal. However by the time this was done, he had reduced any chance of a fair and reasonable level of compensation to a pittance.
Craig has already had to undergo heart surgery and hospitalisation for months after his birth and two more surgical procedures to open his aorta. In addition to this he faces at least five more surgical procedures to correct Tom Smiths Arthritis having already had one and suffers from cognitive difficulties and information overload problems in the learning environment.
Despite all this he remains a cheerful, courteous and obliging person who rarely - if ever - shows resentment over what has happened through no fault of his own. His compensation for all of this was £1,250 which if he survives his three score years and ten will amount to £17.86 per year.
So who should be blamed for my family's ill health?
- The builder, who built our home and left a partially blocked flue? What checks if any did he carry out?
- British Gas who was paid to service my appliances every year from my taking possession of the house? Should they not have identified that there was no safety cut out device on the fire fitted in my house when I took possession? Was it unreasonable to have expected them to have identified that the fire was 'spilling' and what levels of products of combustion we were exposed to?
- The shop where I purchased the fire? Was it unreasonable to expect the fitters from shop where I bought the new fire to check the flue and if the appliance was 'spilling' after it had been fitted?
- A combination of any of the above?
As an ordinary person how can I make these decisions when those people who are supposed to be expert in these matters cannot agree. There are laws governing selling, laws to protect people from fraud and if you believe all you read and hear, a way for everybody to get their problems addressed.
If this is true, why is there no mechanism for victims like myself and my family to pursue these issues effectively? Why must we rely on a system where the winner will be the party with the deepest pockets? Something must change if justice is to be available for victims who, when poisoned, often don't even know what day it is and are very easily dismissed by skilled lawyers retained by the companies and ultimately paid for by the servicing fees of the victims pursuing them.
In conclusion could I offer the reader some sobering thoughts. Having suffered exposure to carbon monoxide, carboxyhaemoglobin forms in our blood. We know that when we go out in the fresh air CO starts to be displaced by the oxygen we breathe so our carboxyhaemoglobin levels start to fall. When we go back into a high CO atmosphere the carboxyhaemoglobin levels in our bodies are topped up again, so we may have even higher than ever levels in our body from this renewed exposure.
What happens to the other constituents of the products of combustion in our bodies before they are exhaled? For example, do things like benzene ring derivatives and heavy metals have a chance to start producing carcinogenic reactions? I haven't yet found the answer to the last question. If you can, then please let me know.
Many people have asked why it has taken so long for me to tell this story. In truth it has been because I have not been able to bring myself to let it go, but now on the tenth anniversary of the death of my husband and the twenty-first year since the nightmare began, I feel I owe it to Albert, Paul, Gavin, Kelly and Craig to set things straight. The moral of this tale - if indeed it has a moral - is that you can do everything right but still get it wrong.
But I do exist, as does my family and tens of thousands of CO poison victims, and as long as I am able I will keep on reminding society that it has an obligation to care for those damaged by its mistakes.
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