UK PEOPLE: MAKE MPs AWARE OF THE IMMENSITY OF YOUR CONDITION
Posted: Sat Jun 11, 2011 1:19 pm
Hi everyone. This is TMAU Malory who hasn't posted for a while. The pressure group we have formed is beginning to make some tiny waves amongst the medical profession. We want malodorous conditions to be taken seriously and we are going to target health MPs on 4th july.
I feel it is a very positive thing we are trying to do; by pooling our positive energy I hope we can make a difference for those people who are suffering in isolation, for those whose doctors are sending them to psychiatrists and for those who are unaware of the existence of this website. By breaking down the taboo about odour (the cause of the odour is irrelevant) things can change. If there is no dialogue about odour-producing conditions then things cannot move on. All those people who have been brave enough to be featured by the media have done so much to open up this much-needed dialogue. Thank you! People who have established websites and support networks have done so much for us. Thank you! Now we all need to make an effort to give something back.
I go to Jivamukti Yoga where we dedicate each practice session to any person or group of people who need positive energy. It’s a really powerful practice ‘cause you contribute something positive (prana, spiritual energy or whatever you choose to believe) to somebody else and this deflects from the self. I see this ‘campaign to smash odour taboos and raise awareness’ in this light. Our efforts may not even help us directly (especially us over 40s) but we may help people in the future (teenagers even) whose doctors have become more informed about odour conditions. Eventually, conditions such as TMAU may even be researched more fully. Whenever I tell ‘happily normal’ people about my condition, I feel I have done something positive. I told my yoga teachers that I didn’t join in the chanting in class because of my breath odour and briefly told them about TMAU. They were quite fascinated and it was a relief. We pave the way for those who come after us when we ‘come out’ I believe.
To arrive on Monday 4th July
I would like everyone to e-mail/write to their local MP asking them to pressurise the following medical organisations into taking malodorous conditions such as TMAU seriously.
On the same day, I would like you also to e-mail the list of MPs below with the same request.
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.
The General Medical Council, by their own admission, “have followed a ‘hands off’ approach to CPD” (doctors’ Continuing Professional Development, which includes keeping updated about new conditions) “and have left the medical Royal Colleges and others to get on with it” but, in July 2010, Lord Patel reported that “The GMC should update its 2004 CPD guidance.”
(google GMC paper ‘The Role Of The Regulator In Doctors’ CPD’ for full article)
If possible:
• Briefly state how your odorous condition affects you.
• Refer to the social model of disability.
• Refer to the Patel report for the General Medical Council about
re-examining the issue of Continuing Professional Development for doctors.
Here is a list of the British medical organisations we contacted to request that GPs be informed about TMAU and/or that research is carried out regarding Trimethylaminuria and other odour-producing medical conditions:
• Dr. Clare Gerada and Mike Wheelan at the Royal College of General Practitioners, 1 Bow Churchyard, London EC4M 9DQ.
We had a response from Ruth Palmer.
[email protected] (Tel 020 3188 7425)
• Clinical Innovation and Research
[email protected]
We had a response from Hannah Price. Tel 020 3188 7597
• Linda Willmott Tel 020 7395 2312 [email protected] Rosa Parker ([email protected] )
at the Medical Research Council
We had a response from Felicia Rodriguez.
• General Medical Council
We had a response from Jabbran Bhatti (0161 923 6602)
• British Medical Association
• Royal College of Physicians
Professor Humphrey Hodgson (020 7935 1174) replied.
List of British Health MPs to be contacted on 4th July:
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
Thanks to all who offer support. I hope that somebody somewhere will eventually benefit from our efforts to raise awareness of malodorous conditions amongst the medical establishments. Things will change very slowly but, when you are having a hard day at work, bear in mind the social model of disability which states clearly that we are 'disabled' and that bullying is unlawful. It does not matter if your condition is not labelled or named. If you have a chronic odour condition, it is a state of being which does not make you any less human and requires tolerance and understanding from the establishments in our society.
ps. Some people who have exclusively breath odour are diagnosed with TMAU. if you want to be tested by Dr Lachmann in the UK the website TMAU.org will tell you what to do.
I feel it is a very positive thing we are trying to do; by pooling our positive energy I hope we can make a difference for those people who are suffering in isolation, for those whose doctors are sending them to psychiatrists and for those who are unaware of the existence of this website. By breaking down the taboo about odour (the cause of the odour is irrelevant) things can change. If there is no dialogue about odour-producing conditions then things cannot move on. All those people who have been brave enough to be featured by the media have done so much to open up this much-needed dialogue. Thank you! People who have established websites and support networks have done so much for us. Thank you! Now we all need to make an effort to give something back.
I go to Jivamukti Yoga where we dedicate each practice session to any person or group of people who need positive energy. It’s a really powerful practice ‘cause you contribute something positive (prana, spiritual energy or whatever you choose to believe) to somebody else and this deflects from the self. I see this ‘campaign to smash odour taboos and raise awareness’ in this light. Our efforts may not even help us directly (especially us over 40s) but we may help people in the future (teenagers even) whose doctors have become more informed about odour conditions. Eventually, conditions such as TMAU may even be researched more fully. Whenever I tell ‘happily normal’ people about my condition, I feel I have done something positive. I told my yoga teachers that I didn’t join in the chanting in class because of my breath odour and briefly told them about TMAU. They were quite fascinated and it was a relief. We pave the way for those who come after us when we ‘come out’ I believe.
To arrive on Monday 4th July
I would like everyone to e-mail/write to their local MP asking them to pressurise the following medical organisations into taking malodorous conditions such as TMAU seriously.
On the same day, I would like you also to e-mail the list of MPs below with the same request.
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.
The General Medical Council, by their own admission, “have followed a ‘hands off’ approach to CPD” (doctors’ Continuing Professional Development, which includes keeping updated about new conditions) “and have left the medical Royal Colleges and others to get on with it” but, in July 2010, Lord Patel reported that “The GMC should update its 2004 CPD guidance.”
(google GMC paper ‘The Role Of The Regulator In Doctors’ CPD’ for full article)
If possible:
• Briefly state how your odorous condition affects you.
• Refer to the social model of disability.
• Refer to the Patel report for the General Medical Council about
re-examining the issue of Continuing Professional Development for doctors.
Here is a list of the British medical organisations we contacted to request that GPs be informed about TMAU and/or that research is carried out regarding Trimethylaminuria and other odour-producing medical conditions:
• Dr. Clare Gerada and Mike Wheelan at the Royal College of General Practitioners, 1 Bow Churchyard, London EC4M 9DQ.
We had a response from Ruth Palmer.
[email protected] (Tel 020 3188 7425)
• Clinical Innovation and Research
[email protected]
We had a response from Hannah Price. Tel 020 3188 7597
• Linda Willmott Tel 020 7395 2312 [email protected] Rosa Parker ([email protected] )
at the Medical Research Council
We had a response from Felicia Rodriguez.
• General Medical Council
We had a response from Jabbran Bhatti (0161 923 6602)
• British Medical Association
• Royal College of Physicians
Professor Humphrey Hodgson (020 7935 1174) replied.
List of British Health MPs to be contacted on 4th July:
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
Thanks to all who offer support. I hope that somebody somewhere will eventually benefit from our efforts to raise awareness of malodorous conditions amongst the medical establishments. Things will change very slowly but, when you are having a hard day at work, bear in mind the social model of disability which states clearly that we are 'disabled' and that bullying is unlawful. It does not matter if your condition is not labelled or named. If you have a chronic odour condition, it is a state of being which does not make you any less human and requires tolerance and understanding from the establishments in our society.
ps. Some people who have exclusively breath odour are diagnosed with TMAU. if you want to be tested by Dr Lachmann in the UK the website TMAU.org will tell you what to do.