Please be aware we are not medical professionals and the following information and advice is based on the experiences of people who have contacted CO Gas Safety.
Please also be aware that this section relates to getting health support after mild to moderate Carbon Monoxide exposure. If you have any concerns that you are still currently being exposed to Carbon Monoxide you must seek emergency medical help immediately, if you can please ask for a blood or breath test for CO. A result which is negative for CO doesn’t necessarily ensure that you haven’t been exposed to CO because CO leaves the body quickly in a survivor. Also see our Emergency section on what to do if you suspect a gas leak.
Information & Advice after mild to moderate Carbon Monoxide Exposure
Many people are unaware that exposure to Carbon Monoxide, even mild to moderate levels, can result in long term health effects. From what we’ve heard, medical professionals generally don’t offer any advice if you are no longer being exposed to CO, if the risk has been removed and you show no obvious signs of CO poisoning. It generally seems to be the case that if you have survived exposure to mild to moderate levels of CO, most health professionals do not expect you to require any treatment. However, there is growing research, which is supported by the experiences of the people contacting CO Gas Safety, that suggests mild to moderate long term exposure (or even short term in some cases), can have an impact on your health and wellbeing.
To gain a better understanding of how CO poisoning can affect you, we recommend reading the All-Party Parliamentary Carbon Monoxide Group (APPCOG) 2017 Report, ‘Carbon Monoxide Poisoning: Saving Lives, Advancing Treatment’. This report has been compiled by a cross section of health professionals who are experts in their field, and includes a number of real life case studies.
Some of the symptoms people contacting us have reported following exposure to CO include:
- Difficulty with regulating mood
- Memory loss
- Difficulty concentrating
These are just a few of the symptoms people have told us about, and by no means should be considered a definitive list. Similarly, experiencing these symptoms does not constitute as a diagnosis of having long term side effects from CO poisoning. These symptoms are common with a number of other illnesses and conditions, so it’s important you don’t make any presumptions about the cause.
Steps to take
Keep track of your symptoms
Keep a diary of your symptoms so you know how often you are experiencing them, whether there are any patterns, whether there is an increase in frequency, and whether there are any specific triggers for them.
Make an appointment with the GP
Next we advise you make an appointment with your GP. They are your primary healthcare providers, so this should be the first step in seeking help and support with your symptoms. Try to schedule an appointment with a GP you know and you find empathetic or easy to talk to, and if your surgery allows it, request a double appointment so you have a bit more time to discuss everything.
As these symptoms are consistent with many other conditions, the GP may want to explore different causes. They may refer you for counselling, to a Community Psychiatric Nurse, prescribe medication – or a combination of all three. All of these may work for you so keep an open mind. However, if you feel your symptoms only came on after your CO exposure and have been getting worse over time, then ask your GP to also make a referral to the Neurology department to explore whether there have been any long terms effects. Read the APPCOG report we referred to earlier in advance of your appointment, and make reference to it when discussing this with your GP. You may have to convince the GP to make a referral for you, so just be very clear about the impact your symptoms are having on your life and the fact there is growing research that supports what you are saying.
At the Neurology Department
It is possible the neurologist you see is not convinced you are experiencing the long term effects of Carbon Monoxide poisoning, because not a lot is widely known about it, so just be prepared if that does happen. They may carry out a series of short tests to establish any clear neurological issues in the appointment. This could involve balance exercises or short memory tests. Ask them to refer you for an MRI scan and to make a referral to see a Neuropsychologist.
It is very important that you are aware, there is not necessarily going to be a definitive way of establishing whether your symptoms are as a result of CO poisoning. And in fact, your symptoms could be the result of the stress or trauma you may have experienced from going through being poisoned. So an MRI scan may not show any sign of brain damage. That’s OK, it will give you peace of mind that it’s been checked, but a clear MRI scan doesn’t mean there shouldn’t be further input. You may have a long wait to see a Neuropsychologist, but it will hopefully be worthwhile doing. A Neuropsychologist can carry out specific cognitive tests to assess your memory, concentration, attention and other areas of cognitive functioning you may be struggling with. They can then make recommendations for further support, including mental health support, even if your results do not clearly establish any evidence of cognitive impairment. There are a number of different therapies, approaches and tools available to help you address some of the symptoms you are experiencing.
You don’t necessarily have to go through the process of seeing a neurologist or neuropsychologist, but depending on your GP, it may be the best or indeed the only way to access appropriate psychological support.
We have heard from some people contacting CO Gas Safety, that B12 injections can have a positive impact on their symptoms. Again there is some emerging research about the benefits of B12 injections after CO exposure, but we cannot comment about this with any medical authority. You might want to read this academic research on the topic of using B12 to treat CO exposure (be warned it is not written in layman’s terms so could be difficult to understand) or for more accessible information about B12 as an ‘antidote’, go to this B12 Deficiency website. Ultimately your GP will only prescribe B12 injections if your blood tests show you are deficient in B12, however the above website explains the myriad of issues with getting a correct diagnosis. Do not start supplementing with B12 tablets in advance of a blood test as this could skew your results.
Ultimately, the key is to use the information you have to empower yourself, be assertive, and make an appointment with your GP to start getting support. Take a friend or family member with you if you feel it will help, but be clear, determined and assertive in what outcome you are looking for, and don’t allow your requests to be dismissed as unnecessary.
It’s really important to focus on what outcome you want from engaging with these health professionals though, as they may not ever be able to give you a definitive answer as to whether CO poisoning is the cause of your symptoms, but they should be able to provide you with appropriate assurance, support and treatment.
Updated in 2019
OLDER INFORMATION THAT SOME MAY STILL FIND HELPFUL
Chronic carbon monoxide poisoning resulting in bilateral cataracts and a cystic globus pallidus lesion
We do have some toxicologists who we can recommend you try to contact ideally through a solicitor.
Please let us know what your opinion is about your toxicologist, GP etc. so we can help others.
Please email firstname.lastname@example.org
We would really like to hear from concerned medics or any medics who are interested in CO+ (carbon monoxide and other products of combusion).
We highly recommend Dr Sarah Myhill but she seems too busy to see patients usually.
Dr Myhill has written quite a few books on diet etc. which some sufferers may find helpful.
We have been told of Dr Ray Perrin’s work and his technique by a CO victim.
Stephanie has talked to him on the telephone and liked him very much. We suggest you visit his website https://theperrintechnique.com/
The COMed Group
From: Isabella Myers
Sent: 09 November 2018 14:03
To: Stephanie Trotter <email@example.com>
Subject: RE: Victims of CO and the COmed group
Thank you for your e-mail of 2nd October about the role of COMed and the issues faced by the victims of CO poisoning. The members of COMed discussed your e-mail and the issues you raised at their meeting last week.
The role of COMed:
As a sub-group of the All-Party Parliamentary Carbon Monoxide Group (APPCOG), COMed brings together a range of medical and healthcare professionals to advise policy makers on CO matters, and demonstrate and develop best practice in the healthcare sector. COMed thereby contributes to APPCOG’s work to reduce deaths and injuries from carbon monoxide (CO) poisoning through informing and influencing policy makers in parliament and government.
It might be helpful also if I were to make clear that COMed has no authority to provide advice to individuals or make referral recommendations.
COMed has been in existence since 2013. Since then we have gathered evidence to support the publication by of a number of APPCOG reports into the effects of CO in order to raise awareness amongst policy makers of the impact of CO on people’s lives and hence of the importance of better research, diagnosis and treatment.
In 2015 the APPCOG published Carbon Monoxide: from Awareness to Action and last year, in October 2017, published a follow-on report Carbon Monoxide Poisoning: Saving Lives, Advancing Treatment. This report included a number of hard-hitting essays written by specialists across the healthcare disciplines that were currently represented on COMed.
The 26 recommendations made within the report Carbon Monoxide Poisoning: Saving Lives, Advancing Treatment are aimed at raising awareness amongst policy-makers and healthcare professionals: stimulating the provision of appropriate resources, encouraging greater collaboration, and strengthening the evidence base on CO poisoning. Following the launch of the report (which I recall you attended) the APPCOG and COMed have raised awareness of the report’s recommendations through engagement with policy makers, from the Secretary of State for Health and Social Care, the Chief Medical Officer, to Public Health England. Work has also been carried out within the healthcare sector to take forward relevant recommendations.
COMed is very sympathetic to your concerns that healthcare professionals are not sufficiently aware of the risk and possibility of CO poisoning. The inquiry specifically sought to address whether there is an institutional lack of awareness of CO poisoning amongst healthcare professionals because it is considered rare, or due to a lack of training, and to explore the barriers to making a correct diagnosis. The essays in the report address these issues and the report includes three recommendations that COMed believes are particularly relevant to the concerns you raised in your note. These, together with some of the progress as a result of COMed work, are set out below:
Recommendation 1. The Residential Inspection Aid on Carbon Monoxide, produced by Public Heath England and the Chartered Institute of Environmental Health, should be reviewed in line with the current evidence base and be externally validated. The Aid should be made accessible to environmental health professionals and all those involved in carrying out housing inspections and assessing housing standards.
Recommendation 6. Paramedics and other emergency service personnel should be equipped with accurate and reliable personal CO monitors to protect themselves, and non-invasive devices to aid in patient diagnosis.
Recommendation 11. To accelerate diagnosis of CO poisoning and the initiation of treatment, the Royal College of Emergency Medicine, the College of Paramedics and the joint Royal Colleges Ambulance Liaison Committee should lead the development of a COHb screening protocol and, with industry, a rapid standardised scene assessment procedure to determine indoor CO levels, for use by emergency service personnel and by research scientists.
COMed is in correspondence with Ministers in the Department for Health & Social Care and with PHE about these recommendations, some of which will require the provision of additional funds to take forward.
Good work is happening through COMed members on awareness raising in the healthcare sector: the London Ambulance Service is raising awareness across front-line responders through the dissemination of a mandatory e-learning module that all London Ambulance Service clinicians will be required complete; London Ambulance Service paramedics have also been provided with an extended guide to aid the detection and recording of a CO exposure.
COMed is also working with the Gas Safe Charity who have developed an e-learning package targeted at those who work in people’s homes and will be helping with targeted dissemination of this e-learning. Further e-learning opportunities are being discussed within other sectors.
Some local authorities and organisations have provided their fire & rescue service with CO alarms to fit in people’s homes as part of their fire safety work, and COMed will be drawing on these examples in continue to engage Ministers and the healthcare sector.
There are also a number of recommendations in the report that specifically address the awareness of healthcare professionals in hospitals and GP surgeries, and COMed has a number of strands of action in hand to raise awareness in Emergency Departments and amongst GPs.
I hope you are reassured by these illustrations of how COMed is helping to raise awareness amongst healthcare professionals of the dangers of CO.
With kind regards as always
ISABELLA MYERS BSc DIC MSc MRSB
Independent Consultant on Health, Policy and the Environment