The Myositis Support Group - An Update

Since my blog last week regarding the Myositis Support Group (MSG), I have been amazed by the number of people who have looked at my blog.  The page views counter is now at 2,640, which is an increase of over 250 from where it stood before my last blog.

 

The purpose of my last blog on this subject, was to express my views on the forthcoming AGM, and to hopefully spark a debate about the Charity and its future direction, amongst the members.  And boy has it done that. 

 

I have had a large number of people contacting me, both on Facebook and directly, agreeing that things need to change, to improve the support and help that this group provides.

 

Spurred on by this show of support by these members, on Monday morning I put together an email to Irene Oakley, Group Coordinator, and sent to the Myositis office email address, which outlined several points which I felt needed to be raised before the AGM.

 

In this email, I stated that I was unable to attend the AGM, and in effect felt I was excluded from participating because I had received nothing to tell me what was happening at the AGM.  I pointed out that I had seen the "flyer" relating to the AGM and the fact there were two very important issues, which I felt should have been raised with the full membership before hand, in order to get everyone's opinions and ideas.  I also raised questions about how these two issues, the proposed change of name and the resignation of two of the trustees, where going to be handled, and if a vote was to take place how the votes of members unable to attend were going to be taken into account.

 

How an organisation runs it's business should be set out in a formal document, in the case of MSG a constitution adopted in April 1988.  This document is not available on the MSG website and without this members are unable to know if the business of the charity is being properly conducted.  I asked to have sight of this document.

 

Also, I queried why no Financial Accounts were circulated to members before the AGM, in order that proper scrutiny of the financial position of the charity could be undertaken at the AGM.  On the MSG website the last Financial Report posted was for the year 2007/08.

 

I also referred to my previous exchange of emails, in relation to the decline of the MSG website and the fact that as a result of this members have stopped using it.  I had previously been advised that the new website should be ready for the AGM, and asked if this was still the case. Also had the website been tested, and if so by whom and what feedback had been received.

 

I also covered the lack of any response to some of the negative comments by members on the community boards, to the decline in the MSG website and the support that the charity provides.

 

Finally, I raised the question of the lack of support some members had received by not being able to have phone calls answered, or emails replied to.

 

I finished off by asking that the email, in its entirety, be passed to all trustees, that the contents be discussed at the AGM, and a full response by return as these issues could not be left until after the AGM.

 

Late on Monday, I received a reply, confirming receipt of my email and stating that this had been passed to the trustees.  This went on to say, and I will copy the exact words from the email:

 

" Although you have been very active on the community board, which I know has been appreciated by many who visit the site, the reason you have not received the information is that you are not on the membership list.  I have checked the membership files and cannot trace receiving a membership update form from you.  This took place in January 2010."

 

As you may imagine, I was livid.

 

I could not respond as I was too annoyed and would simply have been rude.

 

Later on Tuesday afternoon, once I had calmed down, I composed a response.  I pointed out that I had completed the update membership form, but of course now had no proof and had received no confirmation from MSG.  I referred to the previous email exchange regarding the website in April 2013, where I had mentioned that I had been a member since 2008, but this had never been questioned at that time.

It all just seemed a convenient way of avoiding answering difficult questions.

There is no full membership list anywhere for me to be able to check my membership status.  So how was I to know without being told.  I am, and have always been, an active participant in the discussions on the MSG community boards, and why would I let my membership lapse and still participate so fully.  Surely it was incumbent on the administration of MSG to advise me if there was a change o my membership.

I also noted that the "buddy's" list, a list of people who can be contacted directly to provide help and support, had been updated and my details had been changed.  I queried why I had not been asked in advance of this change and who had given permission to make this change.

Irene has also stated on the MSG community board that the AGM "flyer" had been sent to everyone on the membership list, regardless of whether they are attending or not.  Since my previous blog 3 people have advised me that they are members but have not received the AGM "flyer".  More worryingly one person has advised that she has not had the AGM "flyer", and wanted to confirm that she was still member.  If she isn't this then raises an issue over why she was allowed to attend the AGM last year and vote!

Despite all of this, I pointed out that the issues I had raised in my earlier email were still pertinent and needed to be addressed.

I also advised that I had completed a new online membership form, and awaited acknowledgement of this.

To date, I am still waiting for a full response to either email.

I still remain a big supporter of MSG.  I think it is vital that we have a highly effective support group here in the UK, which provides support and help to patients and families, that encourages a vibrant community to raise awareness of these conditions, raising funds and supporting research. 

Sadly, we are a long way from this currently, and without some major changes, I am really beginning to fear for the future of this organisation.

So that's what has happened over the last few days.  As I have said before I have been amazed by the number of people reading the last blog and the support I have received.  I welcome any comments on any of my blogs but particularly on an issue like this, which is so important.

Please feel free either to comment here, at the bottom of the blog, or on the various Facebook pages where this is posted.