Lobby of the Scottish Parliament 5th June 2008
June 5th over 30 people attended Action Duchenne's lobby of the Scottish parliament.
Thank you to all of you who came and supported the lobby.
Outside a mass of yellow t-shirts and a banner summing it all up....making muscle wasting history.
Our most successful lobby so far in terms of the awareness raised with MSPs and Scottish Ministers. Families met with their MSPs and some MSPs or their researchers attended the meeting.
Shona Robison Health Minister for Scotland attended the meeting for a brief period of time, but in that time Nick Catlin spoke with her and briefly outlined our demands and why the need for a centre of excellence for neuromuscular conditions is needed. Shona Robison then addressed the parents and supporters.
Shona Robison said that she was open minded and willing to look into the issues raised, she spoke of a hub and spoke concept relating to the centre for excellence. She said that information from clinicians is that a centre for excellence is not the way forward in Scotland but she was open minded and we were very lucky to have such a persuasive man such as Nick and that he put forward a good argument.
One of our supporters asked about time scales and explained that we don’t have time to wait. Shona Robison said that a response would be given by the end of June.
She also said we could expect to hear an announcement on the housing issues fairly soon.
We were disappointed that Alex Salmond could not make the meeting due to his schedule running late and the visit of Prince Charles, however he has sent a letter of apology.
We now must make sure he hears our voice. On the day it was suggested that parents put down questions and opinions for the First Minister and email them to me so I can then put them altogether and send them to the First Ministers office. Please do this by Friday 20th June
Where do we go from here...?
The Scottish government have always made positive statements after the various different lobbies, Since our lobby in 2006 they have funded a clinical geneticist post, however the big issues are still to be fought for it is therefore essential that we hold them to account and don’t let them forget about us. Parents in Scotland are still facing huge costs to adapt their house and big inequalities in the care they receive for their sons. There is still no duchenne research being carried out despite Scotland having an excellent history in research. Parents still do not have direct access to clinical trials. What could change all this? The provision of a centre for neuromuscular excellence.
Keep writing to your MSP when we have the response from Shona Robison we will follow that up. We have a foot in the door we must not let it shut!
Ironically the reason Prince Charles was visiting Edinburgh was to open a centre for excellence into breast cancer research. The Edinburgh evening news reported “The Breakthrough Breast Cancer Research Unit at the University of Edinburgh aims to improve breast cancer treatment and ensure that patients are treated in the most appropriate and effective way for their particular type of breast cancer.
The new research unit is based at University of Edinburgh laboratories, within the Institute of Genetics and Molecular Medicine, and is sited next to the Western General Hospital's existing breast unit.
….the new centre will bring together some of the best Scottish-based scientists and doctors to develop a centre of excellence for world-class breast cancer research.”
IS this not what we want for Duchenne? Then we have to push for it. One day we want the evening news reporting on a centre of excellence carrying out Duchenne Research!
If you want any further information please contact me:
Vici Richardson Regional Advocate Scotland and North East 01670 821133 vici@actionduchenne.org
Vici Richardson
Regional Advocate North East and Scotland