Open Letter to Macmillan to the Chief Executive, Ciarán Devane.

4 minute read time.

Dear Sir,

 

I hope you will forgive the direct approach, sometimes find this is the only real effective course of action when looking for results or to bring facts to the attention of people who can influence their outcome.

 

Well first, thank to you and to your organisation providing such a great facility to those suffering with Cancer. The effect of finding genuine information, help with benefits, guides and even legal matters cannot be over estimated in what can be the lowest point in someone’s life, being told you or a loved one has cancer. Your organisation maybe the turning point for many, we find out that Cancer is not an immediate certain death sentence, that with treatment many will and do survive.

 

Maybe one of the most important aspects of the Organisation is the On-Line Community. Well its one of the most to those that use it, to call it a life line is not an exaggeration. I understand this may sound odd to you, it’s where we gathered to meet. When I say we I mean a community of patients, ex-patients, carers, ex-carers, friends and relatives, the common factor being - we are or have suffered with Cancer its where we picked the brains of those who are further on the journey than us. We learn from their first hand experience about treatment, side effects, ways to avoid or reduce the side effects, different drug trials and this will kill you, sorry no pun intended - we have a good chat, we laugh and we live our lives a day at a time.

 

The other major point is we can 'Talk' to others who fully understand, we can be as open and honest as we want and say things that we could not say to our friends and family without hurting them, we can even talk of our fears. We get to mourn the passing of friends, we get to celebrate the victories of those in remission or best of all - Those given the all clear, there is no jealousy or envy, just a great feeling that one of 'The Family' beat the beast.

 

I understand this may sound like we are group of sad losers but I assure you that is not the case, we come together in a community where colour, race, religion and beliefs are just not important, what is important is that we support others as best we can at a time in our lives when we do need support. We take support when we need it and we give it when we can, a true sharing in every sense of the word.

 

OK at times it can be a bit soul destroying, we do loose friends, it’s the nature of the illness, we know we won't all make it, but when you live a day at a time and enjoy that day then you also can't have too many regrets about yesterday. One of the worst aspects of this Cancer is not that some us will die, it’s the fear and concern for those we will leave behind. This is where The Mac Family comes into its own, they offer help, support and even love and a sense of belonging to those who survive us who otherwise would find it hard to talk to others who did not understand, the importance of this cannot be exaggerated.

 

Sorry for going on but do need you to realise just what the on-Line Community means to many of us.  I do understand you are busy so will get to the point of the letter.

 

A 'New and Improved' version of the software was introduced last week, well more imposed, It was certainly new and featured Mac Green everywhere, to be honest it does look flash and modern, just one problem, it does not work and in its present form is unfit for purpose. It was imposed without being trialed to any real extent by members, we are then informed it’s slow because the site was not expecting so many to sign in, I would of thought was one of the most fundermental questions to be established when designing a site.

                             

It has ripped the heart and backbone out of the community, it was slow and kept timing out, you could no longer see what your friends were doing or what they had posted. In fairness the two point of contact we have on the admin team, Laura and James, have tried to move heaven and earth for us and are steadily solving some of the more major problems, they have solved the speed problem to a great extent and think they have a fix so we can see our friends activities. The have both worked hard on our behalf, but the menu system is confusing to say the least, people are trying to post comments and these just disappear into cyber space never to be seen again.

 

I am not naive enough to think someone will stand up and say sorry guys - I got it wrong and you can have the old site back, even though that’s what the majority want - but then how does anyone justify the time and donations squandered on this fiasco.

 

What I would like is the person responsible to stand up and to talk to us and understand the pain and suffering they imposed, by their negligence, and not using that word lightly, on those who have enough to contend with anyway.

 

Sorry but maybe as you can tell I feel very angry about this, this appears to be a repeat of a similar saga 2 years ago and some of the 'fixes' where never implemented, come on Mac - don't let us down again please

Thank You for sparing the time to read this.

 

Regards John O’Connor

 

 

 

Anonymous
  • FormerMember
    FormerMember

    John,

    I would just like to say What a great letter.

    Perhaps we should all copy it and send it to the cheif executive (obviously changing your name to our own).

    What I don't understand (and I havn't been a member long) is WHY they needed to change it. The old site appeared to be working albeit the photo gallery needed attention. Everything was easy to find and appeared on the front page. I know there were a few issues with comments disappearing, but I think this was more to do with the changes preparing for this "New" site.

    Well done.

     

  • FormerMember
    FormerMember

    John I agree with you here and hate the new changes and have already blogged my opinion about censoring, I am thinking of saying goodbye to my mates in chat and leaving as I really feel that the site didn't need fixing either and was better before.

     

    Thanks for writing such a good letter!

     

    Lis x

  • FormerMember
    FormerMember

    Well done John,

    A very well constructed letter that gets over the importance of the site and the devastation the changes have caused.

    I have sent messages to Laura and sometimes I thought I had over stepped the mark, but then I thought no, they made the mess they need to know.

    I like Sue's idea about copying your letter and posting it with our own names. It would raise the awareness further and could not be ignored. Please let me know if you agree we should do this, as it is your material.

    Tim

  • FormerMember
    FormerMember

    Dear John,

    Thank you for taking the time to put down your thoughts on how the last week as gone. 

    We totally acknowledge that this first week has not been easy for you, but we're working as hard as we can to make sure everyone understands how the new system works. 

    To answer a couple of your points - please don't for a minute imagine that we don't realise what a lifeline this site is to you and many others. We do. We were as upset and as disappointed as you last week when the site wasn't performing as it should, and are now investigating exactly what happened so we can ensure it does not happen again. 

    The previous site made a lot of sense to those of you who were used to it and had spent a lot of time here, but to new users it was a very confusing and difficult place to navigate. There were a lot of problems with it that frustrated many members and it's those problems we've sought to solve by upgrading.  We user tested the new site very thoroughly, over a long period of time and are satisfied that it makes a lot more sense and will enable us to reach many more people in need of support. 

    I understand that any change to a service you're used to can be disconcerting, which is why we have made every effort to answer every question and help direct you to where you need to go while you're still working out where everything is. We will continue to do this, all you need to do is ask. 

    I hope I've been helpful in answering your letter. As you point out, we know there's more work to do to get things completely ship shape and we are committed to providing as much support as we possibly can to all users of the site in the meantime.

    Once again, we can only apologise for any distress and inconvenience you've experienced over the last week.

    Best wishes,

    Laura