Many of the members of the Myositis Support Group (MSG) will today be making their way to Oxford for the charities Conference, Gala Dinner to celebrate 25 years since MSG was founded, and, of course, the AGM.
Because of the difficulties of travelling the distance required to get to Oxford, it isn't practical for me to go. Also with the current heat wave we are experiencing here in the UK, it wouldn't be good for my health.
Since my last blog, things haven't moved very far.
Not having received any response from Irene Oakley, Group Coordinator, to my email written on Tuesday, I sent a further email on Wednesday, asking for contact details for the trustees, in order that I could address my concerns directly with them.
On Thursday morning, I found an email from Les Oakley, Chairman of the Board of Trustees. In this email he had tried to answer selected questions that I had raised, but he had failed to address any of the issues I had raised regarding the AGM.
His answers, I would say, were short, inadequate and, in there tone, defensive and dismissive. Basically you could sum these up by saying he tried to justify what the MSG had done or were doing, but did not consider that there maybe any issues that needed addressing.
At the end of his email, he finished with this statement:
"In conclusion It is very easy to condemn an organisation for what may appear its failures but I would ask you to consider what has been done for Myositis. A few dissatisfied people can moan about our effort but the fact still remains and no amount or argument and debate can alter it, that Myositis, its treatment, management and research has been greatly advanced as the result of this charity and its members efforts."
This statement points to the past successes of MSG but fails to acknowledge that things might need to change to possibly improve how things are done. By referring to "a few dissatisfied people", he appears to be dismissing any one who raises questions or concerns.
Worst of all, in his email, Les, has intimated that I am a bully.
Having received this early on Thursday, I acknowledged receipt and advised that as I was out in the morning I would respond later in the day.
I had an uneventful trip to the dentists in the morning, and after getting home and having lunch, I began to think about a response to Les.
I pointed out that he had only answered selected questions, and that I felt his answers were defensive and did not accept that there may issues that needed to be addresses. I again asked for sight of the constitution as this had not been answered in his reply.
I have advised that I will waiting to hear what comes from the AGM, and will then address the issues I have raised again.
I made a few points about my membership and the fact that I appeared to have been "lost" from the list of members, but pointed out that I had completed a new form, online, and that I would consider myself a full UK member unless told otherwise.
I suggested that his "few dissatisfied people", was in fact a growing number of MSG members who were unhappy about the group and its lack of support. If he looked at the community boards, he would be well aware of this.
I then went on to acknowledge the fact that MSG had achieved a lot over the past 25 years, and that far from wanting to condemn the organisation, I wanted to see it grow and develop into the first class support group for all its members, and for all sufferers of Myositis. I also gave a little background as to my journey with Myositis, to show that I have a personal interest in the success of MSG.
At the end of the email, I asked for an apology for implying that I am a bully.
Later in the day, I received a response from Les, to say that he will endeavour to answer my questions after the AGM. Sadly there was no apology.
In all honestly, I'm not entirely convinced about what I may have achieved this week, if anything. I think Les probably thinks he has a trouble maker on his hands, and probably thinks that he can dismiss me in the same way that he appears to have done others in the past. However, he has not considered that there may be problems with MSG, that need to be resolved, for the benefit of the organisation. He also doesn't appear to consider that there might be a growing number of members who think that things need to change.
On the plus side, I have received messages of support, and a good group of people have come together, who are interested in helping support a move towards changes for the better at MSG.
I am not looking for change, for change sake. I strongly feel there are problems and issues with MSG, and with the way it is run, that if resolved will only benefit the organisation and the members, and provide a much more active support group.
So finally, I'd just like to say to all of you going to Oxford this weekend, travel safely, and that I hope you enjoy the Conference and Gala Dinner. I hope that the AGM, provides some answers, and starts to move MSG forward in a positive direction - but I doubt if it will.
Enjoy the weekend.
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