Caring Matters Now BIG Weekend 2023

Our BIG Weekend was both an activity weekend and a conference. The program was carefully planned to give members and their families a choice as to the activities and workshops they participated in. Our guests were split into groups for 0-3s, 4-7s, 8-10s, 11-13s, 14-17s, 18+ years old, allowing our members to spend time with their peers! Adult members and parents also had the opportunity to take part in some activities throughout the weekend, rather than attend workshops. Each group participated in, fencing, climbing wall, the giant swing, vertical challenge, team building, survivor challenge and archery. The Survivor challenge and Giant Swing proved to be the most memorable! ‘Survivor’ required members and their peers to plan their camp, consider the weather, and share the tasks to build a shelter before time ran out. The Giant Swing was teamwork of another kind… members were harnessed into a three-seater swing before the rest of their group hauled them up to 10m high! Upon reaching their desired height, members pulled the release cord sending them hurtling down towards the ground before swinging up towards the sky! This is nothing like the swings you find at your local park. Some of our members were too little for these breath-taking activities, instead they had the opportunity to take part in a Sports Day, Treasure Hunt, music session, games, stories and colouring! Some with parents and others supervised by volunteers.

For those who wanted to keep their feet firmly on the ground, we had a full programme of workshops available which were influenced by the day-to-day support needs of our members. We were joined by Dr Ella Guest and Abbi Matthews from the Centre for Appearance Research (CAR), University of West England (UWE) Bristol and Morgan Zolkwer from Great Ormond Street Hospital, University College of London (UCL) who we commonly partner with in research projects.

Saturday morning kicked off with a Focus Group for our adult members focusing on what research and support would be most helpful for adults with CMN. Members highlighted that there seems to be two groups of adult members who have different needs. Firstly, young adults who have grown up through the charity, and secondly those who are a little older (50+) who have discovered and engaged with the charity in recent years.

This Focus Group was attended mostly by the second group, they voiced a shared need around self-esteem and thinking traps. Several members expressed that if support had of been available for them as teenagers, life would have been very different for them, particularly in navigating relationships and intimacy. The group concluded that support in open, constructive, and safe conversations about CMN would be helpful and that the opportunity to participate in skills-based training would be really helpful. As a charity we regularly share research opportunities with our members, in recent years some of our adult members have taken part in a project ran by Maia Thornton (CAR) around visible differences and intimacy. We are excited to learn from the podcast episodes produced in conclusion to this research, and for our adult support pathway and literature to be guided by its findings.  

Our members had the opportunity to meet Morgan Zolkwer, who works for Professor Kinsler, at Great Ormond Street Hospital, where he conducts his PhD, research into the psychological impacts of CMN. Our members often highlight a gap in the provision of psychological support available to those affected by CMN- physical health provision seems to be easier to access than psychological support. With this in mind, Morgan explored how family members can play a part in the psychological adjustment of somebody with CMN, describing resilience as elasticity rather than invincibility.’ Morgan suggested that one of the ways parents can do this is by helping their child to handle curiosity and challenge. Morgan continued, “…my job doesn’t exist because you need help, more because of societies flaws and intolerance to accepting difference.” By opening the floor to listen to our members and welcome their experiences, we were able to share ideas on how medical professionals could provide a ‘better first appointment,’ informing Morgan’s research and practice in clinic. You can listen to a podcast featuring Morgan as he discusses the ‘Impact of a Photoshoot on Perceptions of Birthmarks’ here.

Dr Ella Guest (UWE) from Centre for Appearance Research (CAR) invited our parent and child members between the ages of 8 and 17 years old to participate in an online survey to understand what it’s like to have CMN and what their support needs are. The aim of this research was to better understand both the experiences and support needs of children and young people with CMN, and their parents, to focus on the services provided by CAR. In this session Ella shared current findings and other projects which are members could get involved in. Research opportunities are shared with members via email as well as posting them in our closed Facebook groups.

Feedback from previous support events has shown that children, teens, and siblings enjoy our events, feel less isolated and more confident afterwards. However, these members also tell us that they do not feel more able to speak about CMN after an event. This interactive workshop hosted by Dr Ella Guest (UWE) and Miss Abbi Matthews (PhD at CAR) allowed the children, young people and siblings attending the BIG Weekend to creatively express their understanding of CMN, how they saw themselves, ways that they care for their skin and good things about having CMN. Our hope was that by doing this, it would increase our members ability to talk about CMN amongst friends and family.

As we walked around the room, it was a privilege to listen as our members and siblings described their posters. A child member learnt the full name for CMN for the first time, a teen member said they “haven’t done this before!” And a sibling described CMN as being “like the 7 wonders of the world, CMN is unique and amazing!” At the end of this session our young members had discovered good things linked to having CMN, even if they couldn’t see this to begin with! A common theme that came up time and time again was that being there at PGL, together, with others who had CMN was a good thing about having the condition!

Parents often express an uncertainty in when to begin talking about CMN with their children, especially whenever their children are young. In this session, we reflected on the findings from the previous workshop with children and young people on ‘How to talk about CMN’ (see section 6) and discussed the following questions:

• Should we talk about CMN if our children haven’t noticed it yet?
• Is it ever too early to talk about CMN openly with our children?
• How can learning how to talk about CMN impact children and young people as they grow up?

During this session we also talked about having those more difficult conversations, for example understanding the importance of sun cream. We concluded that conversations should be child led, according to the child’s own development, life experience and understanding. Dr Ella Guest (UWE) and Miss Abbi Matthews (PhD at CAR) shared a recent resource which has been developed by Maia Thornton at CAR, the Parent’s toolkit, and asked members to participate in research by reviewing the resource.

Five of our Young Ambassadors attended the BIG Weekend, we had hoped that they would be able to facilitate a game of football on the Saturday evening, however the rain had other plans! Throughout the weekend, our Young Ambassadors mingled with families and friends they have made throughout the years as well as having the opportunity to meet new families! Seeing teens with CMN at our events is important for our younger members who look up to them as role models. Following the BIG Weekend, we also had a new Young Ambassador sign up! 

Click here to read Anna Goddard’s Personal Story.

Members were invited to this conversational session led by Hannah Cree, our Support Pathway Practitioner and Val Unsworth Chair of Trustees. We invited an adult member and a parent to share their perspectives as we considered how best to meet the needs of siblings whilst supporting our child with CMN. Hannah reflected that ‘Children have unique needs for many reasons and there may be needs within your household which are bigger than CMN! Or maybe CMN is the thing in your household that gets most of the attention.‘ She suggested that there is a balance to be sought in being able to talk openly with your child about CMN whilst not wanting the parent- child or sibling relationships to be solely about their condition. We shared the observations that whilst siblings are often a child with CMN’s biggest cheerleaders and that most of the time members report only positive relationships with siblings, this doesn’t stop parents from feeling guilty at times, or doubting themselves as parents. Val reflected that right now you may not see the benefits for siblings, however growing up with a sibling with CMN may shape them for the better, as siblings gain a wealth of experience and skills which equip them for life. Our adult member beautifully reflected her experience that “siblings go the whole way”, “are the closest people to me, so I don’t have to explain it,” and are “peer groups in the outside world.” We reminded our members that Caring Matters Now very purposefully plans events to include siblings and are interested in gathering sibling feedback!

Val and Joe Unsworth shared their ‘Learning along the way’ at each life stage, as their daughter Jodi Whitehouse progressed through childhood into adulthood with CMN. Joe opened the session by sharing their experience in hospital whenever Jodi was born, and the challenges that came once they brough Jodi home. Val and Joe spoke about their roles as Mum and Dad, and that ‘being different got them through’ especially in those early days as they learnt to manage life with CMN together. Val echoed Morgan Zolkwer’s advice (see section 4) in building resilience through child led open communication from an early age.

As Jodi listened from the back of the lecture theatre, Val shared that children are often blissfully unaware of the big milestones that we worry about as parents, and that more than not people saw past Jodi’s visible difference due to her strength of personality and character.

During this session, we had the privilege of hosting an annual research update from Professor Veronica Kinsler, world leading specialist in CMN. This session was open for members to join virtually and also included a Q&A session. Since then, Professor Kinsler has shared a research update with us, which includes access to her team’s most recent research paper.