I wrote to my Local MP Andy Burnham back in August 2009 to ask for his support with regards to raising the profile of Chiari Malformation and Syringomyelia.

I thought that with him being the Secretary of State for Health and having held positions governing the DWP at some point in his career that he would be the perfect ally.

I was asking him for help with raising awareness and improving proper diagnosis from our GP's or at least recognition of the classic symptoms which is the main issue that we face.

Well, it took a while for him to reply, he must be a busy MP I guess as I got the reply on 16th December 2009.

Before we start you might want to read my original letter to him. Click here

So, here's the reply that I got............. with comments from me after each paragraph ;)

Dear Mr Downing

Thank you for your recent letter regarding Chiari Malformation and Syringomyelia.

Recent? How about 2 months ago?

Chiari Malformation is included in the NHS Evidence website at www.evidence.nhs.uk. This site is more techincal than NHS Choices and is aimed at health professionals, rather than the general public. It includes links to research papers on specific medical conditions allowing each professional the opportunity to develop their knowledge base.

So I looked at this website and there are 2 or 3 references to Chiari Malformation. However, the first one is a link to a comparison between the use of a dural patch and not in surgery on a minor, the others are just as useful to a GP. There is no information whatsoever contained in that website that a GP could use as a reference when a patient presents a list of symptoms to them. There is absolutely nothing that would help in any way shape of form with regards to diagnosis. And anyway, why would a GP be searching so specifically anyway?
I'm sorry Mr Burnham, but whoever is doing your research for you has hung you out to dry on this one and given you a bum steer.

You already may be aware of the Anne Conroy Trust which is a charity affiliated to the Neurological Alliance (NA) that provides information and support for people affected by Chiari Malformation. Its website can be found at www.theanneconroytrust.org.uk.

Yes, we are aware of the trust but you have to pay a membership fee to them before you get any information as a patient in the UK. Many people are put off by this almost immediately. Unfortunately the Neurological Alliance do not list anything about Chiari Malformation on their website at all. They do however have lots of general information and in any general internet search they do not come up on any search result with regards to Chiari. They are a generalistic neurological service that concentrate as far as I can tell on other Neuro conditions, so no help for us there then.

Chiari Malformation is classed as a long term neurological condition and therefore covered under the National Service Framework (NSF) for Long-Term Conditions. The NSF, which was launched in March 2005, focuses on improving services for people with neurological conditions across England. People with these conditions will get faster diagnosis, more rapid treatment and a comprehensive package of care under the NSF. In addition, all people with other long-term conditions will be supported to live as full and independent a life as possible.

I am sorry Mr Burnham, but the NSF DO NOT list Chiari Malformation on their site nor do they make any reference to it at all. According to the Chiari department at The Walton Centre, Chiari is not yet listed as a long term condition. Nobody that I know of has ever received the type of service with regards to fast diagnosis, rapid treatment, and a comprehensive care package. We are generally diagnosed after a very long battle, we are left to investigate / research it on our own as there is no general information available from the NHS (Not listed on either NHS Choices or NHS Direct currently) we go through surgery, often still asking lots of questions and then are released without after care information, most without Physiotherapy support or any other type of after care on offer. There is usually a follow up appointment, but this can vary from 3 to 6 months afterwards and often just as a cursory 15 minute appointment. We are NOT offered any support with regards to enabling us to live as full and independent life as possible - far from it. We are mis-understood and ignored by the DWP, we are found to be "fit for work" and left to fend for ourselves and made to feel like scavaging fakers.

The Department of Health is working closely with the NA in order to improve services for the treatment of neurological conditions. We have invited the NA to establish and co-ordinate a national stakeholder group for implementation of the NSF. Compriosing representatives from the third sector, clinicians, Strategic Health Authorities and the Long-Term Conditions Delivery and Support Team, the group will focus on the implementation and finding solutions where implementation is not progressing well. We are also working closely together to establish regional clinical champions who will work with local NHS organisations and patient groups to promote best practice and further support implementation.

Well, we already know that Chiari Malformation is not currently recognised as a long term condition as it is NOT referred to on any of the organisations sites that he has mentioned to date. All he is talking about is generalisation, no specific reference to Chiari Malformation at all. He is talking about creating meetings to facilitate other meetings, and in the meantime nothing is happening with regards to Chiari Malformation because they concentrate on other conditions such as MS et al. I think that the last paragraph is one of those political side steps that they provide to try and prove that something is actually being done. Nothing is being done about Chiari Malformation directly. Sorry Mr Burnham but I am not easily blinded by this type of nonsense.

Through the Third Sector Investment Programme, we have also funded the NA to run a three-year programme (2009-2012) to engage in and support the commissioning of neurological services, in order to develop an England-wide network of local neurological alliances.

Same as the above, nothing is happening with regards to Chiari Malformation specifically.Furthermore, its all England based....what about Wales and Scotland and Ireland??

His final comment was "I hope you find this information of interest"..............

I think that I have already answered this one.

So this is a reply from a guy that is our Health Minister? The whole thing reads like someone has done some cursory internet research and found the Anne Conroy Trust, linked it with the word 'neurological' and added cut and pasted some information from an internal document about "proposed" improvements that they are making with regards to "general" neurological services.

There is nthing in the information that he has provided that would improve the ability of our GP's to diagnose Chiari Malformation at least properly, correctly or in a timely manner. He hasn't even mentioned Syringomyelia in his letter apart from in his initial thank you! If he thinks that Chiari Malformation is currently regarded as a long term condition as receives the level of patient care that he says it does then he is quite clearly mad! If it was, then there would be information packs available to GP surgeries, which there obviously is not. If it was recognised as a long-term condition then it would be listed clearly on the NHS Choices and NHS Direct websites. If it was listed as a long term condition, then there would be patient information packs and a proper after care package.

As you can tell, his reply has done nothing but exacerbate the issue in my mind (and that of others who have read his reply already, and as you would expect I am already penning a reply to him. I am also trying to get an audience with the guy - so we will see what happens.

It is clear that they are placing more importance on generalisation with regards to neurological conditions, which is going to do nothing positive with regards to affecting GP education to at least recognise the classic symptoms of Chiari for at least consideration.

Meanwhile there are thousands of people like us suffering needlessly, ploughing through red tape and misdiagnosis, whilst all the time our prognosis worsens.

AAAAAAAAAAARRRRRRRRRRRRRGGGGGGGGGGGGGGG!