Don't be put off if the MPs did not respond to us last time; things are changing. Organisations (Medical Research Council etc) are starting to take notice of our voices. Please take part in a mass e-mail and letter-sending campaign targeting British MPs.
We want MPs to recognise the disabling nature of odour conditions and to acknowledge the right of odour sufferers to access education, employment or disability allowance.
On or around the 29th of November, we will remind the British health secretary of our presence and our needs.
I am drafting an e-mail for this purpose and have the contacts listed below:
Draft e-mail:
Metabolic malodour disorders such as Trimthylaminuria (TMAU) can be of a severely debilitating nature. As malodour disorder sufferers emit a repellent odour through their breath, skin and/or pores, their conditions impact upon almost every aspect of their lives.
TMAU, an incurable disorder in which the sufferer cannot oxidise the malodorous trimethylamine, is a condition which encroaches upon the wellbeing of others, thus rendering the sufferer a ‘social misfit’ and inhibiting their career progression. Our community requests specific protective legislation to ensure young odour sufferers reach their full potential in the education system and to enable employed odour sufferers to work in an environment free of harassment and discrimination.
The Disability Act does encompass conditions which adversely affect a person’s daily activities. Yet malodour sufferers often feel unprotected by anti-discriminatory legislation because malodour conditions are still not explicitly regarded as disabilities, and most sufferers do not feel entitled to Disability Living Allowance. If awareness of malodour disorders was increased and more doctors informed about them, then the malodour sufferer would feel more empowered in the workplace. Moreover, if protective legislation were put in place, and malodour disorders clearly recognised as being disabling conditions, malodour suffers could not be so easily excluded from society and their basic human rights denied them.
Contacts:
South West Surrey Constituents
If you are a constituent and would like to write to Jeremy Hunt in his capacity as MP for South West Surrey please use the following contact details:
Post:
2 Royal Parade
Tilford Road
Hindhead
Surrey
GU26 6TD
Email: [email protected]
Telephone: 01428 609 416 (Constituents)
Non constituency enquiries relating to the Department of Health
If you are a not constituent of South West Surrey, but have any comments, feedback, or issues relating to health matters and you wish to write to Jeremy in his capacity as Secretary of State for Health, then please feel free to contact him via telephone number: 0207 210 4850 or via email by clicking on the following link: Contact Jeremy at DoH
Shadow sec of health: Andy Burnham
Constituency
10 Market Street, Leigh, WN7 1DS
Tel: 01942 682353
[email protected]
Parliamentary
House of Commons, London, SW1A 0AA
Tel: 020 7219 8250
Fax: 020 7219 4381
[email protected]
www.andyburnham.net/
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Raise awareness amongst British MPs on 29th November 2013
Thanks for replying.
Things do change if we push for it.
2 years ago we campaigned the Medical Research Council for a research grant into the only officially recognised malodour condition to date (TMAU). Today, we have that grant.
http://gtr.rcuk.ac.uk/project/772B5BB8- ... BC7F8369DF
Positive action makes us feel positive. I've nothing to lose. Have you? SO why not try
Things do change if we push for it.
2 years ago we campaigned the Medical Research Council for a research grant into the only officially recognised malodour condition to date (TMAU). Today, we have that grant.
http://gtr.rcuk.ac.uk/project/772B5BB8- ... BC7F8369DF
Positive action makes us feel positive. I've nothing to lose. Have you? SO why not try
Hi
For those of you willing to send a message to Jeremy Hunt MP to raise awareness of metabolic malodour disorders, perhaps focusing on the potential discrimination against sufferers within the workplace/education system, and requesting clearer disability legislation, 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.
Thank you for supporting this effort to improve our lives
For those of you willing to send a message to Jeremy Hunt MP to raise awareness of metabolic malodour disorders, perhaps focusing on the potential discrimination against sufferers within the workplace/education system, and requesting clearer disability legislation, 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.
Thank you for supporting this effort to improve our lives
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
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
