This last week has been my first as a trustee for the
British Dupuytren’s Society (here after BDS) and I think it is fair to say that
I have settled in to making suggestions and seeing what happens. We have already
had 2 meetings since the AGM and a lot has been going on.
This week I have tried to find changes and developments that
we can make to help improve the charities visibility and hopefully help to
increase the income, not least through trying to come up with ideas for what I
can do as fund raisers as surely this is the least I can do for the charity.
Fingers crossed that in the next year you see some pro-active fund raising from
me, the difficult aspect is getting other people donating as you can’t do so
many things in a year and ask the same people to give you money over and over
again.
So what are the changes that we are making and hoping to
make?
I suppose that it is best to start with the obvious which is
this blog. Many people will know that I am quite an experience blogger having
come in contact with the BDS through my Ledderhose blog (see BDS website for
links) and we all felt that a blog could bring something extra to the charity.
The blog is designed to be a less formal way to stay in touch and interact with
patients by keeping them more up to date with what we are doing (in our own
time remember) on a weekly or monthly basis) and hopefully how these changes
will impact the all-important patients (which don’t forget includes us).
Another fairly small and quick change that I have
implemented and just needs some more linking is to make a BDS shop – see here http://www.cafepress.co. uk/britishdupsoc.
The shop is free to run and was quick to set up and any profits will go to the
BDS, so if you fancy a jumper to support us or a bib for your baby, certainly
one I will be thinking about, then have a look round and give us some support
through not only the profits but also through the awareness you can raise by
having a bent finger on your chest.
I think that is it for the main changes this week, but in
the long term we really hope to make a difference, from my point of view as a
Ledderhose patient it would be great if we could get more recognition of
radiotherapy as being a good treatment option for Ledderhose and maybe even one
day get it on the NHS, surely having patients undergo a little bit of
radiotherapy for 2 weeks in total must be cheaper than performing surgery and
managing recovery and physiotherapy and then probably having to perform that
again and again because it keeps on coming back? From a Dupuytren’s point of
view I am sure there are lots that we can do but one of the things that has
stuck with me in the first week is that patients are not getting referred to specialist
from their GP until the disease has reached a point where their treatment
options are limited and again this means that radiotherapy cannot be used. I am
not saying that I think radiotherapy is the be all and end all but I think that
is a lot of patients it can work and it can therefore stop unnecessary surgery
as it can stop disease progression and prevent surgery.
It also turns out that this week is trustee week, I have
only been doing it for one week so I’d like to acknowledge the work done by the
past and present trustees as the BDS and perhaps together we can take this
charity to another level.
No comments:
Post a Comment