The Myositis Support Group

We are rapidly approaching the AGM for the Myositis Support Group (MSG) which is being held next weekend in Oxford.

 

Sadly due to the difficulties of travelling, I won't be attending, and frankly if it's going to continue to be this hot, I'd probably just melt away if I did go.  However there are a number of issues that people have been raising about this charity, that need to be raised at the AGM, and I'm going to use this blog to put forth my four pennies worth.

 

I first became aware of this group sometime ago when it was mentioned to me by my consultant, who asked if I was a member.  I had some scepticism about these sorts of groups, but actually found that after looking at the website and particularly the community bulletin boards, that it was quite a vibrant group, with lots of communication between members, offering support and advice.

 

I think I joined the group in 2008/9, but since then the group seems to have gone into decline, and the number of members using it has dramatically reduced.  Certainly, the website is long overdue an upgrade, and the bulletin boards, although easy to use, are not particularly user friendly, in that you cannot put in paragraphs, cannot edit, put in links to sites, blogs - the list goes on and on.

 

As a consequence many people have moved away from MSG and gone over to Facebook and the various support groups on there.  These put you in touch with people from all over the world, and allow much greater flexibility of use.  However, Facebook isn't to everybody's tastes.

 

And let me just say from the start that I think it is absolutely essential that here in the UK that we have a UK based support group.

 

At the AGM there are a number of issues that have already been raised for discussion in a "flyer" that has been circulated to those attending..

 

One of these is a proposed change of name for the charity from Myositis Support Group to Myositis UK.  In the "flyer" about this change it states:

 

"As the charity has grown it has been felt necessary to keep apace of how the charity is viewed by the general public, medical institutions and grant making bodies. It is considered that this change is a natural progression for the charity to make. However, within the charity the same commitment can be assured from all concerned."

 

However there is nothing about how this change of name is going to be approved or voted for, or indeed if there is going to be any discussion regarding this change.

 

The "flyer" goes on to mention the retirement of two of the charities trustees.  Again there is no mention of an election for replacement trustees, or if any have been nominated.  Currently the existing trustees are re-elected each year, and from what I understand, this is done by asking the AGM for approval for their re-election.  However for a new trustee of a charity there needs to be a vetting process, as outlined on the Charity Commissions website, and I would have thought a proper nomination process, and then a formal election.

 

Both the proposed change of name and the election of trustees are issues of such importance to the group that I would have thought that these needs to be open to all members not just those attending the AGM. 

 

When setting up a charity, or indeed any organisation, generally they need to set up some rules for running the organisation.  On the Charity Commission's website it states the MSG was set up with a constitution adopted on 13 April 1988.  However this constitution is not shown on this site or on the MSG website.  Therefore as members we are unable to know if the currently proposed changes are being done in a properly constituted manner, or to be able to challenge how they are done.

 

I'm not saying that the change of name might not be a good idea, or that we need new trustees, but we need to know that in making these changes and in electing new trustees to the board, that this is done in accordance with the constitution of the charity.  And again, I would have thought that both of these issues are of such importance that they should be open to all members to vote on, not just those attending the AGM.

 

Communication, from MSG to members is poor at the very best.  The "flyer" about the AGM, appears to have only gone to those people attending.  I have only become aware of it's contents because one of the members has posted a copy on one of the Facebook support pages.  However, in order that all members know what is going to be discussed, and in order that they can comment on any of the issues to be raised, I would have thought that this "flyer" should have been circulated to all members.  By not doing this, those not attending are effectively denied an opportunity to be included in any debate.  If the "flyer" were circulated to all members, then those not attending could offer there views and opinions, which could then be represented for them at the AGM. 

 

However, this seems to be indicative of the general communication issue.  The last Newsletter shown on the website is issue No. 68, which dates back to March 2012.  My understanding is that Newsletters are either circulated by post, or via email, depending on the members preference, but at the very least these should be accessible through the website.  I have never had a Newsletter, either in the post or via email.  Why haven't later issues of the Newsletter been posted on the website?

 

Similarly, Annual Reports haven't been posted on the site since 2007/08.

 

On the section of the website regarding meetings, there is a report on the AGM and mini-conference in July 2008, but nothing since then. 

 

I have personally sent emails to the MSG office, both to the general email address and directly to one of the trustees, and these have not been answered.  Other people say the same, and some have even complained about the telephone at the office not being answered.

 

A "Listening Ear" facility, where members can speak to other sufferers on a one-to-one basis was proposed, and set up, but seems to have disappeared.  When I emailed to volunteer to be included as one of the contacts, I got no response.  This facility should be an important part of the support network that MSG provide to members, but to me, it doesn't appear to be a priority.

 

At previous AGM's, shortcomings with the website have been raised and there have been promises that changes are going to happen soon, but we are still waiting.  I have raised this issue myself, again via email, and have again been told that a new site is being developed.  When pressed for a timescale on this, I was advised that they hope to be able to have it ready for the AGM.  In the Trustees Report and Financial Statement for the year ended 31st March 2012, one of the plans for 2012/13 was to launch a new website and EBay shop.  This new website is long overdue and if it isn't forthcoming at the AGM, then the board need to be asked some hard questions about, why it isn't ready and when it will be.

 

One of the other plans is to evaluate the Listening Ear.  That should be interesting.

 

Below is a full list of the plans shown in the report, which I would hope at the AGM the board of trustees should be reporting on the progress of:

 

"Attend meetings and conferences as appropriate throughout the year which have an interest in Myositis.

Continue to update all our information leaflets

Launch the new website and EBay shop

Evaluate the "Listening Ear"

Continue with our three main fund raising activities

Continue to maintain a good relationship with the medical profession

Plan celebrations for our 25th Anniversary in 2013 as a registered Charity"

 

There has been a huge decline in the use of the community bulletin boards on the website.  Some of this is the fact that these boards are not user friendly, and some will be the growth of alternative support groups on social media sites such as Facebook.  There have been numerous messages from people expressing their disappointment that these boards no longer seem to be used, and even some that have questioned the existence of MSG.  I wonder if the board of trustees ever look at these community bulletin boards, and take on board what is being said.  If they do, there seems to have been no response to put peoples minds at rest or to encourage greater use of these pages by saying what future developments are about to happen.  If they do not, then they should be.  In any event the lack of any response says to me that the board of trustees aren't listening to the members.

 

In the past people have stated that if they have stood up at an AGM and raised issues with the board of trustees, they have been cut short.  Some have even said that they have later been criticised by other members for taking issue with the board. 

 

The AGM is the forum to be able to raise and freely discuss issues.  The board should listen, and either comment there and then, or make a commitment, with a timescale, when they will respond in full to questions or points raised.   People should be heard, with respect to their point of view, and should expect a response.  The fact that there are members who support the board of trustees and have criticised those who have challenged them, only goes to show the goodwill that exists towards the board.  But this shouldn't be taken as licence to ignore members concerns.

 

Now given all the negatives, I've put down here, I have to acknowledge the work that has been done over many years in raising funds.  Based on the last 5 years accounts, MSG has raised well in excess of £350,000, and if you were able to look at the total raised over the lifetime of MSG, I'm sure the figure would be well in excess of £1,000,000.  Now in my opinion that's a bloody good effort when you think that the conditions we are talking about are rare and little known by the general public.

 

Personally, if I was at the AGM, I'd like to see the following raised:

 

1. Communication of information - Improve the way that the board communicates with members.  Notices for events, newsletters, etc need to go to all members, whether by post or via email, but at the very least, they should be posted on the website. 
2. Communication with the office - If telephones aren't being answered for whatever reason, this needs to be acknowledged and a solution found.  Similarly with emails.  If help is required, I know that people have offered help previously, why isn't this take up.  If there are times when phones or emails cannot be answered, no one is going to mind, as long as members are aware of this, and can be assured that they will get an answer within a reasonable timescale.
3. Constitution - The written constitution for the charity should be a published document, available to members on the website.  How else are we to know if the board is conducting the business of the charity correctly - such as the change of name and voting for new trustees - and how are we to know the procedure if we feel something has not been done in accordance with the constitution.
4. Website - What is the position regarding the new website and when can we expect it.  Has any new site been seen by any members, and what feedback have they given.  If the new website hasn't been "tested" by members, in my opinion a work group of volunteers - and I'd be willing to put my name forward - needs to be formed to test and feedback, with a view to maximise the user input into the usability of the new site.  We don't want to get a new website and then find it doesn't live up to the expectations of the users, and put us back to square one.  The website is a key interface between members and the charity, whether its member to member, or member to board, and the charity cannot afford to get this wrong.
5. Listening Ear- What is happening with this?  Does it need to be re-organised and then re-launched.  Why isn't there more about this on the website to promote its use.
6. Listening - Is the board listening to the concerns of members?  They can see these clearly from the community pages and many of the recent comments posted.  It isn't sufficient to just read these comments and not respond, because members just feel they are being ignored.  The board needs to respond, and to ensure action is taken, so that members feel they are being listened to, and that their feedback is appreciated.  No one like criticism, but if you don't listen to your members, pretty soon they will vote with their feet and go elsewhere, as in the case of Facebook.  And criticism isn't always a negative thing, it just depends how you use it.  When I was working we had a policy of "continual improvement".  This meant listening to customers and staff, and responding to the issues, complaints, even compliments, in order to keep our business moving forward.  The same can easily be applied to a smaller organisation such as MSG.
7. Board of Trustees - Is now the time to have a trustee from the members of the charity, to represent the views, feelings and concerns, or ordinary members.

I think MSG is at a bit of a crossroads, and that unless it starts to respond to the concerns of members, things might start to fall apart.  That to my mind would be a crying shame.

 

Irene and Les have run MSG, for the past 25 years, and their efforts and hard work should not be understated.  To have consistently raised the funds, to have supported organisations, and have provided a point of reference to myositis sufferers here in the UK, is no small feat.  They should be thanked for their efforts and supported and encouraged to move the organisation forward.

 

But everything has to change, and evolve with the times.  And now might just be that time for MSG.

 

I'm not suggesting that Irene and Les should be moved aside, far from it.  Now should be the time for them to welcome new blood and new ideas onto the board of trustees, in order to keep MSG relevant and help grow and develop, from the foundation they have set.  Their contacts and knowledge are invaluable to this charity and to lose that would a disaster. 

 

But also to do nothing, to maintain the status quo, would similarly be a huge mistake.

 

Finding new people to help, or to become trustees, won't be easy.  Its time consuming and for sufferers with fatigue issues, it won't look like an option, but there are people out there willing to help and support this charity.

 

Letting MSG fall further shouldn't be an option, we desperately need a support group here in the UK.  But we need it to be something that members can use and also can input into. 

 

With this being the 25th Anniversary of MSG, it is the perfect opportunity to look forward to where the charity is going and to have an open debate about carrying it into the next 25 years.  All options should be considered, and all should be openly discussed.

 

I wonder if an option worth looking at would be to split the organisation so that one side has the funds raising responsibility, giving grants and donations, and the other looks at the support of patients, families.  The two could still be linked, with financial support from one given to the other, and common aims, but the activities could then be done by different boards.  Certainly the support side could more easily be run by members.

 

These are just my thoughts.  I'm sorry I can't be at the AGM, not only because I would enjoy this sort of debate, if it is allowed, but also for the opportunity to meet many of the great people I have got to know over the last few years through MSG.