Support Contact Training Day - November 2023

It was that time of year again, our annual Support Contact Training Day! As the day arrived, our team travelled from across the UK and Ireland to join us in person, whilst those who were joining online got set up at home for the day with a gifted box of biscuits and a hot chocolate! Our Support Contact Training Day is not only an opportunity to bring our team up to speed on charity updates and equip them with new skills- it is also an opportunity for us to remind them of how much they are valued. 11 Support Contacts joined ‘in-person’ and 9 joined online! We were also joined by 4 staff members and our Chair of Trustees.

After welcomes and introductions, including some interesting facts about each other, our team was presented with a Support Contact Resource Pack. The pack consists of a Caring Matters Now sports bag, making it easier to transport resources to Support Events, and inside each pack is a How Do You C Me Now book to share with families, medical booklets, age-specific guides, and a copy of our schools guide. Our Support Pathway Practitioner, Hannah, shared some reflections from our BIG Weekend and encouraged the team that the best way to promote the value of our annual event for members was to come along!

Last year, we heard from our South West Regional Contact, Colin Mackenzie who had taken part in research alongside the Centre for Appearance Research focusing on Mental Health and CMN. It was fantastic to be able to report back this year on the workshop facilitated by Morgan Zolkwer, who works at Great Ormond Street Hospital for Prof Kinsler conducting his PhD research into the ‘Psychological impacts of CMN.’ This year, we invited team members who had attended conferences within the past year to report back on their experiences representing Caring Matters Now and educating medical professionals. It was so encouraging to hear how enriching these experiences had been for each volunteer and to see the team come forward to sign up for conferences in 2024.

We split into groups, across the room and in breakout rooms online, to discuss next year’s Support Events and then we joined together for a session on charity updates. As our Fundraising and Communications Officer is currently on maternity, Lisa, our Finance Officer, gave a summary of fundraising events in 2023 and shared our fundraising totaliser which we have been sharing on our social media in recent months. We took some time to share ideas on ways to fundraise, with a particular focus on family friendly events, fundraising events which are accessible for all members, highlighting again the link between support and fundraising for our members. We also shared our exciting Christmas campaigns! Hannah updated the team on support developments, this included an update on our Online Communities, our Young Ambassadors and the introduction of Plain Language Versions of Prof Kinsler’s Research Update. Hannah shared a fun fact that as we met, our Online Stay and Play Infant Group was meeting too!

Hannah was most excited to share with the team her recent experience of having a Young Ambassador join the charity for work experience, during which they wrote a Patient Perspective Journal which has now been published with the British Journal of Dermatology- what an achievement! It was a huge milestone to be able to share that the first adult with CMN had been referred to our newly launched adult clinic in St Thomas and Guys’ Hospital.

Each year our Support Contact team have a skills-based session, this year we invested in Equality, Diversity and Inclusion (EDI) training with Diverse Matters. Training our team at all levels of charity life was an objective set out by our EDI Focus Group this year. We were delighted to welcome members of our Focus Group to an online training session, as Kuhan, one of our charity Trustees, who had led the Focus Group attended ‘in-person.’ This year we had a Young Ambassador join us at our Support Contact Training Day for the first time! This young person had sat in on our pre-training call with Diverse Matters during work experience and had made such an impression on the trainers that they invited her along!

The EDI training offered a safe place to have an open conversation about issues around Equality, Diversity and Inclusion which impact the work that we do. As we explored unconscious bias, accessibility and what it means to be ‘an active ally,’ Hannah concluded that this training had given us ‘food for thought,’ and was only the beginning of a conversation. Education is key in this area; Hannah drew the team’s attention to the fact that we are all involved with the charity for a reason in that we have been impacted by either living with CMN or loving someone who does. With this experience, we might know what it is like to be discriminated against and isolated… we must keep this is mind as we reach out to others to ensure a sense of true belonging!

The day concluded with discussions around support-based scenarios with the team who were able to share ideas with one another on how they would address certain situations, and how they would use our Support Pathway to ensure the appropriate support of our members.

The day was thought provoking, as our team logged off Zoom and headed for their trains we knew as a team that we had a lot to think about. Most importantly we were reminded again of the power of being a team. Throughout the day, we continually focused on how best we support our almost 800 members, as support is truly the heartbeat of all that we plan and all that we do. We look forward to the support we will provide our members together in 2024!

Support Contact Training Day - Nov 23
Support Contact Training Day - Nov 23