As the final months of our 30th Anniversary celebrations arrive, we are reflecting on what the future holds for Jessie’s Fund. Our mission is to give every child with a life-limiting illness or complex Special Educational Needs and Disabilities (SEND) a voice through music. The question is: how can we best achieve this?
We know that for every child we help with your support, many more cannot access music therapy or creative music sessions. This could be due to financial pressures, waiting lists, or lack of awareness or training. It is a big ask to reach all these children and young people, but here at Jessie’s Fund we are ready to meet this challenge with your assistance.
We often list our achievements as separate statistics – 44 music therapy posts in hospices, or over 11,000 sessions of music therapy funded. However, what we are learning through speaking with families and professionals is that the network of provision Jessie’s Fund has created across the UK is what has had the most profound and long-lasting impact. Here are two examples of how various provisions funded or part-funded by Jessie’s Fund have come together to transform the lives of two different children: Louis and Amy.
Louis was born premature and spent the first three months of his life in a neo-natal intensive care unit. A specialist music therapist from the local children’s hospice visits the NICU weekly and showed the family how they could use singing to soothe and connect with Louis. They were amazed to see how it stabilised his heart rate and oxygen levels. It also showed his parents that there was something that they could do for their baby when feeling overwhelmed and surrounded by medical equipment and professionals.
Louis stayed in hospital until after his first birthday. His ward had received funding for a music therapist to come every Friday morning, offering him and his family an alternative to the music classes they would have attended had he not been in hospital. These sessions focused on developing his early communication skills, and his parents found they were one of the few things guaranteed to make him smile.
When he was finally discharged, his parents were offered the opportunity to visit the local children’s hospice. It was reassuring for them to be met by the music therapist they knew from the NICU, and they joined the hospice’s weekly music groups for babies and toddlers. Here, Louis began to show a preference for certain instruments through reaching and eye-pointing, while his parents made friends with others in similar situations.
Louis soon became a regular visitor to the hospice. Staff from the play and care teams there had attended Jessie’s Fund training on how to use music to communicate with children with complex needs, and they recognised Louis’ love of music. They quickly learned that the chime tree and big drum were his favourites, sparking the biggest arm movements and loudest laughs, and always had them ready in his room. He has continued to enjoy sessions with the music therapist and sometimes his siblings even join in too.
Amy’s music therapy journey followed a different path was a quiet baby but she always loved music and liked to hear the same songs again and again. Her parents were concerned that she wasn’t meeting the usual milestones and she was referred to the local paediatrician. They were assigned a worker from Portage, a home-visiting service for pre-school children with SEND. It was suggested they attend weekly music sessions run by Portage in collaboration with Jessie’s Fund. Amy was a bit anxious at the first session and struggled to join the circle. However, she soon started coming over to try the different instruments. Her parents sang the songs with her at home and were amazed when she started vocalising along.
When it was time for school, Amy attended her local mainstream school. She struggled to settle and became withdrawn. Her parents mentioned her strong response to music, so the SENCO applied for funding for music therapy at school. Her teaching assistants were able to join in the sessions and learnt different ways to communicate with Amy, who was now much happier to come to school.
Amy later transferred to her local specialist school. The school had previously worked with Jessie’s Fund on a five-day creative music project, after finding out about us through our online on sensory music videos. They were now about to start a one-year development project. The staff in Amy’s class were enthusiastic about using music with her throughout the school day. She became much less anxious about transitioning between different areas and activities. No longer a quiet young person, she also became more vocal about what she wanted – she started using an app on her tablet to request the songs she wanted staff to sing or the instruments she wanted to play. She particularly enjoyed making music with her friends in class. Her parents were thrilled to see her happily join in the whole-school music festival, celebrating the end of the one-year project.
Reflecting on Louis and Amy’s stories show that Jessie’s Fund’s work is not just about the legacy of our individual projects. It’s about how, over 30 years, our projects have connected and built a network that reaches children in many settings and follows them as they grow. Our plan is to keep growing this network to reach even more children and young people across the UK in meaningful and sustainable ways.
What challenges do we face in meeting this goal? The demand for services is rising, but funding is not keeping pace. Competition for grants is fierce, and there is limited statutory or long-term funding. Schools, hospitals, and other settings are often overwhelmed trying to meet their pupils’ and patients’ needs. They don’t always have the funding or capacity to develop their provision.
Still, with your help – through donations, advocacy, or building partnerships – more children and young people with complex needs can be given a means of expression at the points of their life where they need it most. Here’s to the next 30 years (and beyond)!
