Quotes from Survivors

From Valerie Bebington after reading our Report of the Year 2023-2024 on 22.03.24

Hi Stephanie

As often, I’m sad that so many were injured, but sadly not surprised. There’s too little knowledge  or intention for safety, particularly if there are costs involved also.

Such a lot of what I’ve just read applies to what I’ve experienced for years. Particularly unsupportive GPs. Our local London group before we moved were horrendous.. Also my experiences with landlords, gas engineers, building regs, MPs, and many others were all unsupportive. It went on for years. I knew I was right and at risk, and thankfully I could always turn to you.

I finally gave up. I open windows wide all year. I use monitors and air purifiers and fans to deal with the random low level exhaust pollutants that have been an ignored part of everyday life for years and until recently tried to get enough time outdoors to counteract indoor air.

I can smell every air change that mostly others can’t, and my family are now more tolerant as I’ve had a cough for 10 years, and I’ve never smoked.

I’ve read until there’s nothing left to read. So many future plans and safety intentions didnt materialize. I now deal with what I can, and avoid what I can’t. And its certainly not a solution. But it is often, all there is. Ironically though, coping doesn’t validate a complaint.

From Jerry Hill, father of Tom Hill who died from carbon monoxide in 2015 and who has kindly given us a case study

‘‘Thanks Stephanie, the case study about our son Tom Hill, looks great. 

I’ve found it really helpful to write. It has given me the opportunity to look at it from outside. I’m not angry about the mistakes people made where they have accepted them and thought about it. Anyone could make a mistake and regret it afterwards.

But we’re keen to raise awareness of the dangers of carbon monoxide so that everyone, especially those responsible, do the right things from now on to prevent avoidable deaths and injury.”

From Debbie

”I just don’t understand why it’s so hard when people know that this gas can kill you. Perhaps they think just because you didn’t die, you should be glad. But this is a dreadful poison and the after effects are worse than dying because you have to live the rest of your life with them and if the effects are bad, it’s very hard. I don’t understand why people don’t understand this, knowing this gas can kill.

I’ve never felt so bad since I was poisoned and never had so many health issues since then.”

From Sophie

“When I discovered that my children’s ill-health had been caused by a carbon monoxide leak, I was filled with dread. As a parent your instinct is to protect your children, and yet here was this near-lethal danger, hiding in plain sight.”

From Astrid

In 2010, my husband, children and I were very excited to move to a Grade 2 listed house in Lincolnshire. It needed a huge amount of work, including a chimney being installed.

We found the whole house quite amusing and the ancient oil-powered boiler particularly funny. It was in its own room, set on a timer. It had a very heavy brick on top of it – the size of an A4 piece of paper and 10 cms thick. The purpose of the brick was to stop the boiler moving; when it came on it juddered so much it seemed to jump around.

I work for the National Trust, who are very safety conscious, and so I invested in some precautions – I bought a fire extinguisher, a smoke detector or two and a CO alarm for the new house.

It was a very busy time, as moving house in a new area always is. I had to get the children into new schools etc, and also needed an operation. After the operation, my in-laws kindly came to stay to look after me and the children while I recovered.

Towards the end of their stay the CO alarm went off. As a result we had a new boiler installed and the installer was so appalled by the old boiler, that he took a picture of it.

I suppose I did think about the boiler a little and knew something about carbon monoxide but thought ‘that happens to other people, perhaps abroad or on caravan sites.’

I was wrong – it can happen to anyone.

From Emma Jackson-Phillips, the daughter of Frederick Jackson, aged 52 who died of CO from a central heating boiler powered by mains gas on 19th April 2008 in a Cornish hotel

Monday 13th April 2020


An open letter – it concerns all of us

This is a 1-minute read.

These are the facts:

• Carbon monoxide poisoning accounts for 40 deaths a year in the UK
• At least 3 million people in the UK are being exposed to chronic and long-term levels of carbon monoxide far above the World Health Organisation guidelines
• Scotland has passed a law to make carbon monoxide alarms mandatory, yet England and Wales are unprotected
• Basic recommendations from the Health and Safety Executive in 2000 have not been implemented
• There is no further planned or timetabled legislation specific to England or Wales in relation to carbon monoxide
• A lack of awareness about the detection, causation, effects and proof of carbon monoxide poisoning is resulting in more fatalities and illnesses such as brain damage
• The All-Party Parliamentary Carbon Monoxide Group estimates that medical care for carbon monoxide poisoning costs the Department for Health £178 million a year in medical and care costs

Here is what I am campaigning for:

• Increased regulation of the gas industry
• Increased training about the dangers of carbon monoxide poisoning at certification
• A law to make fitting carbon monoxide alarms mandatory in the same way that fire alarms are
• A law to make it mandatory for gas emergency services to carry and use equipment for testing gas appliances
• A carbon monoxide awareness campaign

I thank you for taking the time to read my letter. I hope we can work together to protect public health.
Emma Jackson-Phillips


From Colin the dog’s human companions

People always said our Colin wasn’t just a dog! On a wet Autumn evening in 2018, we came to see how true that was. We were enjoying an early evening cocktail after a tiring day. The log fire was lit for the first time in the season but smoking quite a bit so we opened the French window to disperse. However by this time, my wife was feeling what we thought was extreme tiredness and she went to bed. I stayed to ensure the rooms got properly ventilated but Colin did something much more unusual which probably saved us from illness or worse; he went out in the pouring rain and stayed out, sitting on the ground at the bottom of the garden………he knew something was really wrong.
We have always thought of ourselves as conscientious about gas safety, having our appliances checked every two years at least. We also have monitors in the key spots. But we had not considered the fireplaces of which we have two.

To cure the smoking fireplace, we called the chimney sweep, a new contractor as we had previously used unknown people from the classified. Imagine our horror when the new sweep pulled down a complete sweep’s brush from the chimney.

It’s not just appliances!

Use a proper sweep and take no chances ‘

From a Survivor of CO from a multifuel wood burner

After having a wood burning stove installed, I had no idea that it was a dangerous installation. It left me and my pets breathing low level carbon monoxide poisoning for several months before I finally collapsed. If I had not been on the phone to my brother, we all would have been dead.

I suffer from acquired brain injury secondary to carbon monoxide poisoning and multiple neurological problems.

Both my dogs were affected badly by CO. My small dog suffered horrendous seizures lost his sight and recently died. My bigger dog, she shakes with a neurological condition and has gone deaf. My 16-year-old tortious was found dead.

Before CO, I was healthy, I ran my own private hypnotherapy practice and other business with ease. Only someone who has survived CO truly knows the impact it has on the brain and body. It destroys us in so many ways and it continues too. I am now disabled.

Help for CO survivors is crucial after their CO exposure. But sadly, in my case, some health professionals ignored me for years, either because they don’t know the aftereffects from CO, or they see on our medical records that a solicitor has requested our medical records.

I believe that survivors of CO are intitled to take the people to court for negligence. Especially If the negligence could have been avoided. I know solicitors must request our medical records, but when I look through my own medical records and see a solicitor’s request. I know that doctors see the same.

I must conclude that it leaves survivors wide open for unfair opinions from GPs and doctors. In my own experiences with doctors, I know that I am intitled to an unbiased opinion I know that the solicitors request is sitting in our medical records for all health professionals to see.

In my case, it would never allow for any unbiased opinions from any doctors because they see the “court and solicitor word” on our medical records, and I believe that this should be placed somewhere private to allow survivors the chance for unbiased opinions from health professionals.

I realized this when I was sent to visit a neuropsychologist. The first question he asked me was, “are you involved in a litigation case” He had no interest that I had brain injury, his main concern was my litigation case. I was sent home with no help offered.

I cannot help but feel dismayed by the lack of help for survivors. Mostly it starts with the GP. If survivors must involve a solicitor because of negligence, we should be allowed to do it without fear of doctors seeing this in our medical records, because it truly can make a huge difference to survivors.

We suffer enough with the aftereffects from CO. I don’t think it is right or fair that we must beg or fight to be heard and sometimes not believed. Carbon monoxide has killed many people and left survivors with brain damage. Surely things can only change when health professionals give us the attention we rightly deserve.

I am certain that I am not the only person who has experienced this problem. Do GPs really have to have a solicitor’s request in full view on our medical records for everyone to see? When it has nothing to do with our health. I am certain that it could be placed somewhere “not for open access” to give the survivors a fair chance with all health professionals to get a proper diagnosis early on, without having to beg for the help that we really need and should receive.’

From CO Survivors, John and Irma O’Leary

The situation was very isolating, we couldn’t find anyone who would listen until we made contact with CO Gas Safety.

We live in a tenant-managed housing co-op but our fellow tenants and staff were far from supportive, never mind co-operative. Our initial concern was that what happened to us could happen to someone else – or worse. Unfortunately, it just didn’t sink in and no lesson was learnt or action taken by the co-op. Instead, we felt victimised – people avoided us and talked behind our backs, and it became almost impossible to get repairs done. Fortunately, the culture of the co-op has since changed.

Finally having an explanation helped a great deal. It not only clarified what was going on but it also marked a starting point for getting back to a type of normality, learning what to expect and putting together a plan.

Looking back, the lack of information and ignorance about CO was frightening, both on our part and on the part of others. The light bulb moment came when a friend recognised Irma’s symptoms as very similar to someone else she knew who had suffered the consequences of exposure to CO.

From a Survivor of CO from a wood burning stove

Firstly, it seems that most legislation regarding CO poisoning relates to gas appliances and, as far as I am aware, does not include wood burning stoves. (I may be wrong on this)

Although we researched the company who installed our system before we employed them, it transpired that the fitter either was totally untrained, inept or just criminal. The faults uncovered when the system was finally removed were truly shocking and dangerous. We were just months away from a catastrophic house fire.

As you know we suffered from CO poisoning, from the badly fitted stove, which affected me more than my son. I was diagnosed with a heart condition which the consultant eventually admitted was almost certainly due to CO poisoning. I was ill for a year and have never recovered my previous levels of fitness. My health hasn’t been great since, but I can’t prove any connection. Our lovely cat lost a lot of her fur after being exposed and we eventually lost her to cancer. Once again, not provable.

It is too late for us to receive justice, but I hope that other people will come forward with their experiences and we will be heard.

Belinda’ Speech at one of our prize giving events at the House of Lords in 2015

We have compelling evidence and strong reason to believe that we suffered from carbon monoxide poisoning from our gas powered boiler, since moving into a new house in 2007.

Our story highlights the problems inherent in the underfunding, under reporting and consequent under-researching of the already compelling international evidence that chronic exposure to CO has on people’s health, not to mention other gases and toxic contaminants in boiler fumes. The net result of this, in my experience, leaves the majority of the emergency services and health professionals, wholly under resourced, uninformed and ill-equipped to properly and adequately respond to victims of chronic exposure to CO, if respond at all.

Sadly, this situation had a catastrophic impact on our lives and we were left in the circumstances that were making us ill. On two occasions I found myself in the utterly terrifying and horrifying position where 2 of my 3 children stared at deaths door. With the first child I did not know the reasons behind her ill-health but with the second, the evidence I presented of a possible link to CO/boiler fumes before this, was not only wholly ignored but I was ridiculed and taunted for raising it.

Our journey illustrates the horrors victims live with as a result of this situation, more to the point, it highlights how a victims health and therefore life, is quite literally, left to deteriorate in the hands of a GP/ENGINEER (OR BOTH) who is, at worst, totally ignorant to the silent killer that CO is or at best, is largely uninformed and consequently inexperienced about the impact on health, of chronic LONG TERM exposure to LOW LEVELS of CO/boiler fumes.

Despite my whole family being ill (including our pets) and frequently going to the GP, the medics never considered CO/boiler fume poisoning, even after two gas alarms sounded a year apart of each other and our boiler finally being condemned. Sadly we got no help at all, but a lot of judgement that caused more trauma, to add to an already traumatic situation. I had no idea of where to start in order to restore our lives, after getting NO help from the authorities, despite many attempts and requests for help. I was fortunate enough to make contact with Stephanie and she put me on a path that has been instrumental in turning our lives around. To you Stephanie I am and always will be eternally grateful.