Watch Out, Shunt Manufacturers. I Am Back. In A Nice Way.

4 Sep

Today is Action Day.  Not physical action because I woke up with my head feeling overdrained even before I’d sat upright (hurry back from leave SOON, please Mr Watkins and Simon!).  No, it’s a day for Shunt Project Action.  I’ve not been able to do anything on this for about a month now due to my own shunt playing up and I’ve been rather astonished at how apparent it’s become that if I don’t do anything about this, nothing is going to happen.  I sent reminder emails a month ago to the two main shunt manufacturers who have both been helping me on this; Codman UK (who offered the forty Bactiseal shunts for Kenya) and Medtronic (who I met with at Great Ormond Street and who got very excited about what I was doing, offering support, public profiles, access to their overseas distributors surplus shunt stocks – all in all a very positive response).   I’ve heard nothing back from either of them since.  I know that what I’m asking of companies is going to add to their workloads, plus I’m not paying them, plus it’s urgent – but it is ultimately their choice as to whether they get involved or not.  It’s always been important to me to only work on this with people who feel as strongly about it as I do because there is no money involved; it’s a charitable venture I’m setting up so parties involved have to be driven by passion and determination and not financial reward.    Both these companies volunteered more than enthusiastically to be involved and have been kind and generous with their offers.  But now I send an enquiry for an update and any issues and I get a tumbleweed back.  With Codman I thought we were nearly there; they’d needed a hand-written letter from the charity in Kenya I’m sending the shunts to (BethanyKids), so they got on with that, airmailed the letter to me and I couriered it to Codman offices in Leeds where it was signed for.  I was told it just needed to go through a charity review and then the shunts would be ready for collection.  This was in July and it’s now September and not only do I not know what stage this ‘review’ has got to, I’m no longer even getting a reply to my enquiry.  I feel I shouldn’t be frustrated; they’re probably just busy, they’ll probably get back to me…but I do feel frustrated.  I have a surgeon in Kenya patiently waiting on these shunts and children needing them right NOW and I don’t know what to tell him because now I’m not sure if Codman have just dropped the ball and it’s not going to happen.  If a problem’s arisen their end, then fine but I need to know what’s going on.  Same with Medtronic.  The last I heard was that they were ‘in talks with Head Office’; sounds good.  But no word since I emailed them a ‘so where are we at?’ email a month ago.  I wish I was well enough to go in person to their offices and have a meeting with them; meetings face-to-face are so much more productive and gain momentum.  My confidence in approaching surgeons and manufacturers is fine.  Chasing them up, however, can literally bring me out in a sweat.  I hate it.   I have a lovely friend, Steve, who is Project Manager for the government (transport department – he is hardly a fan of the Coalition but sees his role as being the one to ‘talk some sense into them’) and he’s offered to help me whilst I’m poorly.  Hurrah for Steve.  He has contacts galore within the government (I told you I still intended to get hold of Jeremy Hunt regarding the ridiculous NHS ‘oh-it’s-a-week-out-of-date-so-let’s-just-bin-it’ rules regarding expired medical equipment in this country) and Steve said that chasing up non-fulfilled promises made by major companies is the mainstay of his job.  So I am confident that after a couple of meetings with him, Codman and Medtronic will be back on the ball and I’ll have acquired new skills in ensuring that communications are consistent and productive.  There are children waiting to be shunted and I am not waiting anymore.  I can’t wait to get better because that will be weeks, if not months.  I need to get back on this right now.  With a little help from Steve.  Hurrah for Steve.  Hurrah, hurrah.

Advertisements

One Response to “Watch Out, Shunt Manufacturers. I Am Back. In A Nice Way.”

  1. Sean B May 12, 2014 at 1:56 am #

    I’m 37 yrs old male I suffered a brain injury may 22nd 2014- since then I have a VP shunt in my head

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: