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Harnessing the power of connection is at the heart of Camp Simcha’s Communities of Support groups, which bring together parents navigating similar childhood health challenges or diagnoses.
The initiative started modestly, in early 2024, with Camp Simcha’s JDigest@CampSimcha group, for parents whose child was living with Crohn’s or colitis.
The community was created with a clear mission – to connect people through their shared experiences, provide a bank of knowledge and a safe space to chat and offer valuable information on specific health conditions.
Today, with seven active groups supporting over 250 people, including parents of children with allergies, type 1 diabetes, eczema, epilepsy, an eating disorders group and one for parents with babies born prematurely, the support communities are reaching more people than ever before.
Joanne Woolich, Camp Simcha’s family liaison community manager, who co-ordinates the groups, says: “From information evenings and peer-led sessions to guest speakers and relaxed get-togethers, each group offers not only practical guidance but a ‘community of support’, with more condition-specific groups on the horizon as we continue to grow.
“What I love most about my job is seeing, day in day out, the difference that support can make.
“For example, last week, a mum contacted Camp Simcha about the parent epilepsy support group. Her son had just been diagnosed, and after witnessing him have a seizure for the first time, she was understandably overwhelmed and searching for help.
“Because she reached out to us, within a day she went from feeling alone to feeling listened to, reassured and practically supported by others who have been there.
“She joined our Parent Epilepsy WhatsApp group, where she was met with messages of empathy and reassurance from other parents who truly understood.
“The very next day, she met in person with another mum from the group.
“That connection gave her practical advice and helped her feel more confident about what questions to ask healthcare professionals.
“Most importantly, she felt held and supported and can now benefit from the wealth of lived experience and access to expert advice that she will get from being part of the group.”
“That’s what Communities of Support is about – a safe, trusted space where families can share knowledge, learn from experts and build confidence for the conversations they need to have with healthcare teams.
“And as more families ask for this kind of condition-specific support, we’re committed to growing the programme further.”
The groups are open to anyone in the community who is coping with these childhood conditions or health issues; you do not have to be an existing Camp Simcha family to join a group.
Past speaker topics at group gatherings have included nutrition; advice about sibling support; the impact of puberty on Crohn’s and colitis, as well as Q&As with experts such as a paediatric epilepsy nurse and a gastroenterologist.
The next two events are:
Thursday June 4, 8pm-10pm
A Q&A evening with Dr Joseph Machta, paediatric gastroenterologist, specialist in inflammatory bowel disease (IBD), aerodigestive medicine, motility and therapeutic endoscopy.
Tuesday June 9, 8pm-10pm
MARS (Medical Advisory and Referral Service) panel evening, sharing practical advice on navigating the NHS and advocating for your child. This event will also include a Q&A session.
Both events are taking place in a north west London venue but a Zoom option will also be available for those who are unable to attend the events in person.
To register for a talk or to find out more about joining a group, go to communities.campsimcha.org.uk or contact Joanne Woolich, joanne@campsimcha.org.uk.
You can also find out about Camp Simcha’s direct support for families with seriously ill children on the website: campsimcha.org.uk or email office@campsimcha.org.uk to make a referral.