I'm taking action-your help is welcome.

[Mac]

I've decided to write to my MP about the plight of odour sufferers, see if we can get some wider exposure. They are there to serve us after all. If anyone has anything they want me to specifically mention in the letter then let me know and I'll include it.

Jimi, I'm going to mention this site. As I'll be sending it to a member of the UK Parliament it may be useful to get some stats on the number of members on here from the UK but also number of members in general and amount of traffic that you get, that sort of thing. Can you pm me some details of that?

So, if anyone has anything they'd like to bring up let me know here or send me a pm. I'm not expecting anything but if they can see our desperation then maybe it will inspire some sort of action.

Thank you.

[StillHoping]

Great idea Mac! I have actually been thinking of starting some sort of organization over here, to raise awareness about our plight and possibly provide a support line for odor sufferers, in addition to aggressively searching for a cure. If anyone in Canada is interested in working together on such an organization, please contact me!

[Mac]

Thanks SH and good luck with your endeavour. I try to remain optimistic. We are at a point where we have the opportunity to do something about this ourselves. Groups like this are a great start because we know we're not alone and have other people to confide in and can help each other. Even if we don't find a cure ourselves we can take steps to try to ensure people in the future don't have to suffer the same. That's worth a hell of a lot.

[StillHoping]

You are exactly right Mac and I completely agree with you! I recently also came to the realization that it is pointless to just sit around waiting for a cure, instead of actively doing something myself. For all we know, may God is making us all on this forum go through this for a reason. Maybe our purpose is to find a solution and help other people with this problem.

[malory]

Great idea, Mac. Two years ago, I encouraged people to write and e-mail to their MPs on 4th July. I don't know how many people participated in the effort, but it is always good to keep trying. I am in total support of any raising awareness effort like this and will happily contribute to it. Here is a list of the MPs targeted in 2011, and I also contacted my local MPs too:

List of British Health MPs contacted on 4th July 2011

Andrew Lansley CBE MP
Secretary of State For health
[email protected]
Constituency Office
153 St Neots Road
Hardwick,
Cambridge CR23 7QJ

Simon Burns MP (Chelmsford)
Minister of State for Heath
[email protected]
House Of Commons
London SW1A OAA

Paul Burstow MP
Minister Of State Care Services
Department Of Health
Richmond House
79 Whitehall
London SW1A 2NS
[email protected]

Anne Milton
Under Secretary Of State Public Health
[email protected]
17A Home Farm
Loseley Park
Guildford GU3 1HS

Although the the MPs' responses were minimal, I think it is more effective if a great number of us all write/e-mail/phone at the same time. This technique worked very well with the Medical Research Council.
So, Mac, perhaps let us know when you would like this to happen and we can all send e-mails or write letters.

I remember, last time, including something about our RIGHTS to be integrated into society and to have working lives as well as just trying to convey the severity of malodour conditions. Ultimately, I would like malodour conditions to be officially recognised as disorders and would like to see us included more clearly in the current legislation which disallows discrimination against disabilities. Some people may not want to be labelled as disabled, but this is a label which can provide protection from discrimination at work especially. These conditions are disabling and our MPs need to acknowledge that:

According to the social model of disability, ‘people who have an impairment and experience some form of social exclusion as a result are disabled people. Many people have impairments, such as those who use glasses. They are not usually discriminated against. Disabled people includes people with: chronic illness or health issues… people with hidden impairments. The Disability Discrimination Act of 1995 is rights-based and draws on social model thinking which requires establishments to adjust policies, practices and procedures so that the disabled are not treated less favourably’. Therefore, we all have the right to work and for our colleagues to facilitate our integration in the workplace.

[Mac]

Thanks for the input malory. I think you might be onto something about getting multiple people to pressure them. Also great point about getting it recognised as a disability. I'll email you next week when I've got more time.

[Mac]

As malory has mentioned in another thread, we are writing to secretary of state for health Jeremy Hunt at the end of this month. It would be great if we can get a few of us to make our opinions heard.

[malory]

Mac, I really hope other people follow your lead and e-mail the MPs. Raising awareness is crucial.

This is the link for the brief form you will need to complete:

http://www.info.doh.gov.uk/contactus.nsf/memo?openform

E-mail addresses for the secretary of health (Mr Jeremy Hunt) and the shadow secretary of health (Mr Andy Burnham) are:

[email protected]

[email protected]

However, the e-mail addresses are for local constituents only.

[Mac]

Yes the more names we have behind this the better. Please get involved in this.

[malory]

Thanks to everyone who took part in e-mailing the UK Health MPs.

The reply I received is below:

Thank you for your correspondence of 28 November about Trimethylaminuria (TMAU). I have been asked to reply.



I appreciate your concerns about the strategies in place for dealing with rare diseases such as TMAU.


The Department is committed to increasing awareness of rare conditions such as TMAU, and that commitment has been demonstrated through the UK’s involvement in theUK Plan for rare diseases. The Plan will set out a coherent and joined-up approach to tackling rare diseases and will bring together a number of recommendations designed to improve the co-ordination of care and to lead to better health outcomes for everyone with a rare disease. It will also acknowledge existing developments, such as the contribution that expert centres can make to better diagnosis and treatment of rare diseases, while proposing a number of further developments, such as better information for patients so that they can be fully engaged and helped to understand and manage their conditions.



The Plan will include recommendations, actions and examples of best practice for commissioners of specialised services, Royal Colleges, information providers and front-line staff who deliver care to people with rare diseases. In England, much of the implementation of the Plan will be for NHS England in its role as a single national commissioner of specialised and highly specialised services.



You may therefore wish to contact NHS England for further information on the implementation of the Rare Disease Plan and how this may affect services for TMAU. You can contact NHS England by email at [email protected] or by post at the following address:



NHS England
PO Box 16738

Redditch
B97 9PT