Get local MP to raise question

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Get local MP to raise question

Postby malory » Sat Apr 21, 2018 8:29 am

According to the Genetic Alliance Workshop 'How To Campaign' of 19 April 2018, there are 4 main ways of effecting change through parliamentary channels (Your local MP can: Ask a parliamentary question; Sign an early day motions; Raise or participate in a debate; Tweet/Facebook to show their support).

Our former e-mails to MPs have done a good job of raising awareness generally. If every odour sufferer now writes a very brief letter (and/or e-mail) to his/her local MP and asks the local MP to raise a question, then maybe just one MP will actually do it! Busy MPs will be more likely to respond if we give them one simple, manageable task, which requires little effort/time on their part. Could everyone (in the next 2 months) send a question for their local MP to raise in Parliament regarding the testing crisis?

I think my first question will be:

To ask the Secretary of State for Health, whether his Department will take steps to establish a comprehensive, accurate and relevant test for metabolic malodour disorders such as Trimethylaminuria so that sufferers can be diagnosed and their human rights protected.
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Re: Get local MP to raise question

Postby malory » Sat May 12, 2018 8:00 am

I propose that everyone sends a, very short, written letter to their local MP asking them to pose a question in parliament. All of us in the UK have a local MP who can represent us in parliament https://www.parliament.uk/mps-lords-and-offices/mps/

Our former e-mails have already done a lot to raise general awareness. I know this because some people have sent me the replies they received from MPs. True, the replies are the usual fobbing off, but the information we wanted to share has been very clearly conveyed, so well done to everyone who took part in that initiative. I think if great numbers of us follow up with a written letter asking the MP to pose a question, that could have some effect.

I think testing is a major issue. Without a proper test recognising our conditions, we actually have very little power, especially in cases where we need to prove discrimination. Moreover, hundreds of 'invisible/non-diagnosed' people still have no support whatsoever. There is no point in getting referrals from a GP if the test provided by the NHS isn't useful. We must keep fighting for this situation to be improved first and foremost.


What you may be thinking right now:

I can't be bothered to do this; it is futile...
I say, a united effort with everyone working simultaneously could have an effect. Non-UK people have taken the time to write to our UK MPs, so why can't you?

There aren't enough of us to make an impact...
There are a great many of us with this disorder around the UK in different constituencies, and if every person contacts the local MP, that is great. One MP, Caroline Dinenage, showed some interest but I'm not in her constituency. If anybody is in Gosport, please try to contact her!

I'm sure somebody else will do it so I'm not needed...
I say, that is just laziness. We take the time to write long messages moaning about our lives, so why can't we put a similar effort into trying to do something positive? Some people at MEBO are trying hard to move research opportunities forward. http://www.meboblog.com/ Here in the UK, we can support that by trying to establish a better national test programme.

I want to remain anonymous...
I say, get over it.

I haven't got the time...
I say, a short letter to be printed out and put in an envelope and sent with a stamp isn't a mammoth task. Please copy/modify mine (below) if you wish:

I am writing regarding metabolic malodour disorders such as Trimethylaminuria, which is a socially disabling, alienating malodour condition.

Producing fecal, sewage, rotten egg or fish odours has a devastating impact on all aspects of the odour sufferer’s life. In spite of this, metabolic malodour disorders are regarded as trivial by some medical practitioners because they are diseases without a death end point. Thus, ostracised, bullied, vulnerable people are left without support and, therefore, at risk of suicide. The UK Strategy for Rare Diseases (Page 15) claims: The Government is committed to shortening and improving the quality of the diagnostic journey for rare disease patients. However, our community has yet to see evidence of this.
I wonder if you could raise this question in Parliament please:

To ask the Secretary of State for Health, whether his Department will encourage the NHS to establish a comprehensive, accurate and relevant test for metabolic malodour disorders such as Trimethylaminuria so that sufferers can be diagnosed and their human rights protected.

Also, could you please let me know if I may attend one of your surgeries to discuss this further.
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Re: Get local MP to raise question

Postby EmptyCup » Mon May 14, 2018 1:10 pm

Hi Malory,

I have been trying to write something comprehensive but it just didn't make sense so this will prove very useful, thank you.

Also, can I just say for those who want to remain anonymous, which includes me, you can still write a letter and maybe include an email address for them to reply. The email address can be one specifically made for the purpose of remaining anonymous.

Anonymity for me, and I can only speak for myself, is a way of coping. For now, it helps me and I will retain a certain degree of anonymity. This may change in future. I think joining this forum alone is a step towards that. Anyway this is not about me. I just wanted to say that people can still send letters and remain anonymous.

Empty Cup
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Re: Get local MP to raise question

Postby PoetFire » Tue May 15, 2018 2:57 pm

I agree with EmptyCup.
It's such a unique embarrassing condition, that privacy is a major issue.

I guess there are 'cans' and 'cant's'.
It's great what the 'cans' are doing and they make things happen, but at the same time it has to accepted that many are too embarrassed about the condition etc.

That said, I am grateful for those who act as they make things happen.
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Re: Get local MP to raise question

Postby EmptyCup » Tue May 15, 2018 3:11 pm

PoetFire wrote:
That said, I am grateful for those who act as they make things happen.


Me too.

EmptyCup
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Re: Get local MP to raise question

Postby malory » Wed May 16, 2018 9:37 pm

There have been some very encouraging signs that our group's voices have reached several health ministers. This is a really good time for UK people to contact their local MPs and ask him/her to pose a question. The more people participate, the more likely it is we will have an impact.

RE: anonymity. You have to give your address to the local MP so that they know you are a constituent and that they can represent you. The amusing/ironic side of this is that we are truly invisible/anonymous to most MPs whether we write our addresses or not!! :D Most are just too busy and/or disinterested to even read our messages. It would be great if just one MP took such an interest that s/he would remember my name or address :shock:
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Re: Get local MP to raise question

Postby EmptyCup » Thu May 17, 2018 5:06 pm

malory wrote:
RE: anonymity. You have to give your address to the local MP so that they know you are a constituent and that they can represent you.

Oh, I didn't know that. Thanks for making me aware. I'm very grateful to those who do contact their local MP's but unfortunately I just can't do it, sorry.

EmptyCup
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