NHS Choices have launched a blog package within their won website for patients to blog about their own conditions.

They have set out a wide range of terms and conditions that you would appreciate the need for, but it is a massive step towards making much more information available on a personal experience basis.

They really do have to be applauded for their brilliant move in the right direction.

That's right, you and I can now blog about our conditions officially on the NHS Choices website!

Well, not one to be shy - I applied to be an official NHS Choices blogger and I have been accepted.

That's the good news - the bad news is that they do not YET warrant Chiari and Syringomyelia enough of a priority to allow its own blog space.

In my application I did mention that there are 3 members of my immediate family with Asthma, they said that I could blog in that category and mention (with links) my own Chiari blog and the forum that I belong to. Absolutely amazing.....but we are not reaching our desired target audience!

I have sent them another email mentioning that they have already agreed to include ACM and SM in their annual review, and facts and figures to support then number of "possible" cases in the UK currently. It is thought that 1 in 1000 per population suffer with either or both - that's approx 61500 people in the UK.

We all know about misdiagnosis, so have also put it to them that this figure would be seen to be diluted.

I have also suggested that they might, for the time being, allow me to post in a Fibromyalgia blog. The reason being that this would be probably more in tune with our target audience until such a time when they realise that a seperate blog should be created.

I am sure that you would all agree that this is a massive step in the right direction for all of us.

If you agree with the points that I have made, please email NHS Choices with your views? Please bear in mind that it is a step in the right direction, but offering your support will add to the weight of my application.

All I want is to raise awareness - to be able to do this on a destination website for health matters such as NHS Choices will greatly improve awareness and patient services!

Thank you all and I will keep you informed.

email address for NHS Choices: talk@nhschoices.nhs.uk
NHS Blog Address http://talk.nhs.uk/

Suggested body of email (Cut and paste / delete into email body and add you own name)

Dear NHS Choices / Talk NHS

I would respectfully request that you consider adding the following conditions as a blog subject.

Chiari Malformation and Syringomyelia

I have been diagnosed / am currently going through investigations leading to diagnosis in relation to the above and would welcome being able to see information regarding these conditions on the NHS website and blog pages.

I understand that both conditions are currently being considered under your annual review for inclusion ion the main NHS Choices website and that of NHS Direct also.

There is little enough information from the UK on the internet and feel that the NHS Choices site, as a destination for the UK population, will add much value to creating awareness and helping thousands of people in the UK who are currently suffering as a result.

There are several very useful privately run sites in the UK by ACM and SM sufferers that provide invaluable amounts of support for patients and their carers. However, they do not reach all of those that currently need that support so desperately.

Please help us to help others avoid the trauma that we have been through in a battle for awareness and proper diagnosis.

Thank you

Your name