Sometimes, being the Chief Executive of a charity means that you get pulled away from the very centre of what you are trying to achieve, in my case making things better for people impacted by GBS, CIDP, MMN, and other Inflammatory Neuropathies. Your time gets taken up sorting finances, writing policies, and dealing with organisational issues and concerns. While I always try to keep my hand in and get on the phones as much as I can, it isn’t always possible.
Well for the last two weeks, Claire has been away from the GAIN office on a well deserved break, and this has meant that I have been manning the phones. And wow, what an eye opener. The GAIN helpline has been super busy with people seeking advice, information, support, and sometimes just someone to talk to. And it has been great to hear from everyone.
We have had people calling from all over the UK and Ireland, many of whom are reaching out for the first time with concerns and worries following a diagnosis, others who were diagnosed some time ago but had never found GAIN before, and others who we have spoke to many times before and we look forward to speaking to again.
There have been laughs and tears, worry and concern, shock and relief. It has been an incredible honour to hear people’s experiences and stories, and to be part of their GBS or CIDP journey. And everyone who has called us has been lovely.
What is really clear is that this service is needed so much, and that we are only touching the sides. There are loads more people out there who are impacted by these conditions, but who aren’t getting any support. It’s my job to make sure we reach more people and increase our impact.
Not everyone who has contacted us has had GBS or CIDP, but as far as I am concerned there is no wrong door, and we do our best to support anyone who contacts us. Feedback has been excellent, and it seems like we are doing a good job.
I’ve learnt so much over the last two weeks (as I do everyday in this role) and I really appreciate people putting their trust in GAIN to support them and their families. I will continue to make sure that I get on the phones, the email, and the WhatsApp, but I will be very glad that Claire is back next week. I have a huge appreciation for what she does, now more so than ever.
I encourage everyone to reach out and contact us if you think we can help. We are here to offer support, advice, and information. As I have told people all week, call us anytime if you have any questions, need some support, or even if you want to have a chat. After all, it’s what we are here for.
