August is Spinal Muscular Atrophy (SMA) Awareness Month, providing an important opportunity to raise understanding of SMA and highlight the specialist support available to children and families living with the condition.
This month, we’ve been delighted to hear from Tracy Proctor, WellChild Nurse for children with neuromuscular conditions at Staffordshire Children’s Hospital at Royal Stoke, about the work she and her colleagues have been doing to raise awareness across the hospital.
Taking awareness into the hospital
As part of the awareness month activities, Tracy created a notice board and questionnaire, giving staff and visitors the opportunity to learn more about SMA and test their own knowledge.
The team also showcased information in the hospital atrium, displaying leaflets and resources where they could engage with members of the public and healthcare professionals.
Having a presence in such a busy area provided a valuable opportunity to start conversations about SMA, answer questions and help people understand more about the condition and the importance of early diagnosis and treatment.
The awareness activities were also featured on the hospital’s communications page, helping to reach an even wider audience across University Hospitals of North Midlands (UHNM).
UHNM currently supports around 10 children with SMA, providing specialist respiratory monitoring, sleep studies and ongoing care to identify and manage potential complications as early as possible.
Tracy and the team also work closely with specialist centres across the country to support children who have received treatments such as gene therapy, coordinating follow-up care and monitoring closer to home.
Making every conversation count
One of the most valuable aspects of awareness events is the opportunity to speak directly with people.
For Tracy, the month has provided lots of opportunities to engage with healthcare professionals, patients, families and visitors, helping to build understanding of SMA and the needs of children living with neuromuscular conditions.
By raising awareness among healthcare professionals, Tracy and her colleagues are helping to ensure that potential concerns can be recognised and acted upon as early as possible.
A little kindness goes a long way
The awareness activities have also included a particularly thoughtful contribution from one of Tracy’s families.
The family baked cupcakes for Tracy to take around the wards for staff, creating another opportunity to connect with colleagues and share information about SMA.
It was a lovely gesture that helped spread some kindness around the hospital while also creating opportunities for Tracy to talk to staff about SMA and raise awareness.
Continuing the conversation
Although SMA Awareness Month is coming to an end, raising awareness doesn’t stop in August.
Every conversation, leaflet, question and shared experience can help improve understanding of SMA and the experiences of people living with the condition.
We’d like to say a huge thank you to Tracy and the team at Staffordshire Children’s Hospital for their efforts throughout SMA Awareness Month, and to the families who have supported the awareness activities along the way.
