Just to let you all know, Kent County Council have agree to sign the MND Charter. Kent is the first County Council to sign as a whole.
This was achieved through writing letters, emails and meeting with local key decision makers. Thank you to those of you who sent the template letters to your councillors. We sent out over 60 in the end. The combined effort worked and has got people who make decisions about Adult Social Care, people on the Health and Wellbeing Board amongst others, talking about Motor Neurone Disease, where they weren’t before.
The physical signing of a Charter is going to happen on 18th June, so look out for the subsequent photos, tweets and press release.
More importantly once KCC have signed, the real work begins to embed the 5 Charter principles into their policies and documents.
I?m Katy Styles and I am the Campaigns Contact for the East Kent Development Group. This means that I take the national campaigns of the Motor Neurone Disease Association and make them come alive here in Kent.
My husband Mark was diagnosed with motor neurone disease (MND) in 2010. Because I?m involved in campaigning he is too. He didn?t have much choice to be honest and he?s excellent at it!
I used to be a geography teacher and I never realised that the skills I picked up teaching would be so helpful campaigning for motor neurone disease. Both involve a study of glaciers.
Glaciers move very very slowly, you don?t notice they are moving at all until one day they have moved all the way down the mountain. Campaigning is very much like that. It moves very very slowly; you are waiting for a reply to a letter or email or trying to arrange a meeting and then eventually someone gets back to you and you are on your way.
The 2014 local election campaign is so important. Local councillors make local decisions. They are sitting in meetings right now discussing local health care, local social services, local housing and transport ? services people with MND need everyday and are important to their lives.
I?ve been involved in the campaign by writing letters to those councillors whose responsibilities include health and wellbeing here in Kent. From writing one letter, Mark and I have been to meetings to discuss what it?s like living with MND and what some of the problems are. This has lead to more discussions and subsequent meetings with other councillors with different responsibilities. The MND Charter has yet to be signed but I see it as a success. Councillors are thinking about and discussing MND, where they weren?t before.
On Saturday 12 April, we are holding an inaugural Spring Lunch at East Kent College and I?ll be there carrying an arm full of councillor postcards and template letters printed for people to send to their councillors ? I want to get as many people as possible writing to their councillors to help make the MND voice heard loud and clear in Kent.
If you have a spare couple of minutes please join the campaign to help raise awareness of MND by writing to your councillors and candidates standing for election ? it?s really easy!
As the newly appointed Campaigns co-ordinator for this area, one of 10 similar positions around the country, I attended a campaigning workshop. Campaigning issues were explained and action plans were written. Part of the campaign teams vision is that people act locally. To this end a video was played which showed the workings of NHS England. It is an animation and very informative, although it is still very complex.
It explains why campaigning has to be done at the local level. This means meeting as many of these commissioning groups as possible to explain the specific problems associated with MND and hopefully getting them to sign the MND Charter.
As promised here is an update about the medical research Mark and I undertook at the University of Oxford, for Dr Martin Turner this week.
Mark and I spent the first afternoon in the MEG scanner. Apparently there are only 8 of these in the UK. It was like an MRI scanner but instead of lying down in it you sit with the scanner coming down around your head. Like an old fashioned salon hair dryer you would have seen in the 50s. You have electrodes taped to your arms, face and head. These record your eye movements and finger movements. You are asked to follow an arrow on the screen, if it points left you lift your left index finger, up and down on a LED control pad, but only if the next light is green. If red you don’t move. Not as easy as it sounds I can assure you. this was looking at changes in your brain in response to thinking and action.
The second day was time in the MRI scanner. I had an extra test with a different coil and helmet. This was to measure different chemical changes in the brain, over the whole brain. If you are even slightly claustrophobic this isn’t a test for you as you have to send time in the scanner continuously.
Below is a link to Dr Martin Turners BioMOx project which is the study we took part in.
<a title=”Progress in the Oxford BioMOx project: Pattern of degeneration identified using advanced imaging techniques in the brains of people with MND that is linked to the level of disability.” href=”http://www.mndassociation.org/2866b9aea41d410db99db945e625fbd2?site=283fc445-39c4-4d60-8bbc-3bd9e5e54ec1″ target=”_top”>MND Association: Progress in the Oxford BioMOx project</a>
Everyone who was at this year’s Annual MND Conference in September, will have heard Professor Kevin Talbot’s call to arms. He wanted volunteers to give up time to take part in biomarker studies. People with MND, people without MND, people with related disorders, hereditary MND patients. He wanted everyone.
Following our visit to the Oxford MND Centre earlier on in the Summer, we have volunteered to take part in Dr Martin Turner’s biomarker study into motor neuron disease.
We are having two brain scans, a MEG scan and an MRI scan. ?As I am the same age as Mark, I am useful for the study, as a healthy volunteer. Anyone who knows me well, will be laughing at this point….
The purpose of the biomarker study is to discover a test to speed up diagnosis of MND, to see how the disease spreads, and to monitor its activity. This may lead to more targeted drug treatments in the long term. Well here’s hoping.
It will be great to be at the cutting edge of MND research and to be in Oxford.