I thought I would give you an update on how I have spent my first ten months or so with the charity.

It has been an exciting time for me, getting to know many of our wonderful volunteers and hearing about the work they do, the challenges they face, and working to establish how best I can support them in my role.

Our new Harrogate Lupus Support Group is up and running, and is now on the group page of the website.  A Coffee & Chat group had their first meeting in Surrey, and I have had initial contact with volunteers who are interested in hosting groups in Corby/Kettering, Hampshire, Kent, Bognor Regis and Aberdeen! We’ll be in touch with invitations to join the meetings. If anyone would be interested in starting a group in an area where we don’t currently have one, please contact me. The new groups are starting as simple Coffee & Chat groups, with no committee or financial responsibilities etc. We hope that by simplifying the structure, then we will be able to increase our reach to areas where we are not able to offer support currently.

I have started travelling to see groups as they begin having face-to-face events and joined meetings including the national AGM hosted by the North West Lupus Group in May and National Council in July. I joined the Dorset Group at a fundraising event in Hampreston and visited the North Wales Group when they held their first face-to-face meeting since the onset of the pandemic. I have visited the Salisbury Group and am about to head up north for the first Leeds and Darlington Coffee & Chat meetings.

I have also attended the London Marathon runners’ exhibition to greet some of the amazing people who take on this mammoth challenge for us, and cheered them on as they did it. I also helped Janine on the stand at the Royal Parks Half Marathon and gave a hand to the Enfield Group when they held an Information Day in early October (see the Enfield group report for more information on that).

I have had an online meeting with a group of our Contacts, and I am meeting individually with any Contacts who could not attend, either online or by telephone.

I wanted to give all our Contacts the opportunity to discuss how they have found things during the pandemic, and their thoughts about the Contacts service generally, as well as how we can develop the service in the future. We would like to forge stronger links between the Contacts, the Support Groups and the HealthUnlocked online forum, so that they become a more cohesive support offering, rather than being disjointed. The first step in developing the service is for me to learn from the experience of those who have been involved in the service for so long – in some cases for decades!

The meeting also gave those who attended a chance to chat with other Contacts, which worked very well, and I will be looking to hold these get-togethers, probably quarterly, so that our Contacts feel more connected to the charity and to each other.

The consensus between those at that meeting is that, as the world has changed during the pandemic, with a focus on communication through technology, then the sensible course is to develop our Contacts service using that same technology. This may take the form of offering virtual meetings, or email conversations. I’ll be looking at these options in the coming months and consulting further with the Contacts team.

One of my most important tasks going forward will be to develop training for our volunteers, no matter what they are doing on our behalf. We want to make sure that all our volunteers feel well equipped and supported to fulfil whatever function they are undertaking on behalf of LUPUS UK.

October will see me undertaking “train the trainer” training in Nottingham. This will give me the tools to be able to devise relevant training for our volunteers, and deliver it in-house, meaning that I can tailor training for each volunteer’s particular situation. This should make the training process more adaptable, efficient and cost-effective. We believe that this will enable us to be flexible in our approach to training, and make us more able to respond to the needs of our volunteers, and also to easily “on-board” new volunteers, without looking to outside organisations for that training.

All of the developments mentioned above, I believe, will be beneficial to our members, our volunteers and the wider lupus community, as well as to the charity. I am excited to see where we go from here.

If anyone has any ideas, thoughts or worries that they would like to chat to me about, then please don’t hesitate to contact me at alida@lupusuk.org.uk or at National Office on 01708 731 251.

Alida Horne