At LUPUS UK’s 29th Annual General Meeting (AGM) on Saturday 16th May 2020, we were pleased to welcome Wendy Diment as a new member of the Board of Trustees. Wendy has kindly written this article for us.
I am completely over the moon to have officially become a Trustee of LUPUS UK following the AGM on Saturday 16th May!
As some of you already know, I am currently Regional Co-Ordinator for Pembrokeshire & Carmarthenshire Lupus Group and I will continue in this role, along with my campaigning for equality in lupus patient rights, wherever they live in the UK.
I was diagnosed with lupus in October 2013. I was lucky enough to find LUPUS UK and HealthUnlocked online very quickly. The support from both has been invaluable to me as a lupus patient ever since. I still participate on HealthUnlocked when I can and I think it’s an amazing group of supportive people with so much knowledge to share! It is a real credit to LUPUS UK, who administer the group.
I was questioning many aspects of lupus care in Wales early on in my diagnosis, including asking why there are no Centres of Excellence in Wales and have been actively campaigning ever since. I have involved lupus experts, lupus researchers, my MP and my AM, my local Health Board and also exchanged correspondence with various ministers and civil servants at the Welsh Assembly Government. I also instigated a petition, which you may have seen and signed.
It was September 2017 when I held my first Pembrokeshire Lupus Support Group meeting and this group continues to grow. It also includes a private Facebook Support Group. Coffee & Chat meetings are very successful. We have now started to hold meetings in Carmarthen, which have proved popular and been attended by two of the local Rheumatology Nurses as well. We are working very hard to raise awareness and understanding of our illness, by building good working relationships with everyone involved in lupus care here.
I have had the privilege to attend a LUPUS UK Information Day in Llandudno, a couple of Patient Information Days in Bath and also the LUPUS UK National Council Meetings in London. This has meant that I have been able to get to know many of those involved in the running of LUPUS UK and increase my own understanding of many aspects of lupus.
As part of my new role, I would like the opportunity to be involved with some of the inspections of the Centres of Excellence, so I can see for myself the standards achieved by them and the difference this can make to patients’ lives. I would also like to get to know more about the crucial role of Lupus Specialist Nurses.
LUPUS UK has been hugely supportive of me with establishing the Pembrokeshire Support Group and with my campaign already. I am hoping that I can now give something back to this amazing charity and all those who helped me when I needed it. Starting this role at a time of a global pandemic has meant that my induction and meetings to date are all online and it may be for a while yet. Therefore, I look forward to meeting the Team at Head Office in due course. I do still feel relatively new to all of this, but I am hoping that my commitment and passion will make up for that.
We hope you will join us in wishing Wendy good luck and thanking her for contributing to the charity as a Trustee.