Hi Everyone!

The NHS does not treat MCS in a serious way. This means that it is failing in its duty to provide those of us in the UK with MCS with the health care that we deserve.

To try and get this changed, I've started a campaign on the Equality 2025 blog. If you agree and you'd like to see the NHS start treating MCS patients with respect and solving their problems, please add a comment to the blog in support. If you want to add a comment to this forum too, that would be good, but the important thing is to comment on the blog because that's where the Equality 2025 people will be looking. Please feel free to pass on this message to any other MCS groups that you belong to.

Equality 2025 is an organisation set up by the UK Government to advise on disability issues. I've been in touch with one of the Equality 2025 members about my campaign and got a very supportive response, so if we can show that this is an issue for a reasonable number of people then I'm hopeful that we can get Equality 2025 to act on this quickly, and get the politicians to tell the NHS to lift its game. I remember when Patrica Hewitt told the NHS to stop dragging its feet and start treating women with breast cancer with Herceptin. Why shouldn't we have some action like that?

It's time that the NHS started to take MCS seriously rather than pretending that it's all in our heads and that nothing can be done. Please support my campaign!

Equality 2025 is also looking for experiences, comments and advice from other disabled people. Please spread the word!

I have had this condition for over a year now after a chemical exposure at work. I haven't even had a diagnosis from the NHS let alone treatment.
Other than sick notes from my GP and a few blood tests from my local immunology department, I have had no physical examination or investigations what so ever.
I have been left to sort the whole thing out myself by strict avoidance of chemicals, and had to refer myself to a private physician for a diagnosis, toxicology testing, and treatment to attempt to reduce the sensitivity.
There certainly appears to be no protocols whatsoever regarding how chemically sensitive people should be dealt with by GP's or if they have to be admitted to hospital, like in other countries.

Although it is excepted that there is no known cure for this condition and that avoidance is the way to control symptoms, the NHS still has a duty to diagnose
it surely, even if it is to validate benefit and pension applications.

I think it should also be a notifiable condition, so that the numbers of people affected by this can be monitored. At the moment, there are no records at all in the UK, according to Hansard.

Hi Helen64!

Great to hear from you.

I started this campaign for two reasons:

1. I think that I have the energy now to see it through; and

2. because a friend of mine, who has MCS after a poisoning incident like yours, has also received little help from the NHS.

Cases like yours and my friend's should at the very least be taken on because there is a clear cause and effect relationship, but it still doesn't happen. The NHS just seems to close its eyes to the problem.

I hope that you've posted over on the Equality 2025 blog. Comments are moderated, and so until they're released (this might be a bit slow over the holiday weekend) I won't be able to see them.

Also, if you include any personal details in your comment, they now need you to include a statement saying that you want the comment to be published (see the last paragraph).

Hi Paul,

Thanks for setting up the blog at Equality 2025. I left a comment under all of your excellent posts last night.

Hopefully this forum thread here on EIR will encourage others to make their voices heard on the diagnosis and treatment of MCS as well.

Thanks again!

Hi Maff!

Thanks for your comments here and over on the Equality 2025 blog. Your comment made a lot of good points and I hope that if other people also post comments with their experiences it will show that the NHS' poor record with MCS is a general thing and not just a problem for one or two.

I hope that your post will encourage others to post as well.