Recently I was asked whether the beginning of the Jessie’s Fund story feels like a long time ago. It was a surprisingly difficult question to answer: yes, 30 years is almost a third of a century, and enormous change has taken place during that period – on many levels. Yet there are times when a small incident, a sighting, or (particularly) a piece of music will alter one’s perception of time and sweep the years away.
Jessie’s Fund became a registered charity on 25th March 1995, less than a year after we had spent the final few days of our nine-year-old daughter’s life in a children’s hospice. By the time Jessie passed away there was already a pot of money to which our friends and colleagues (in the world of music) had contributed, and which had been intended to fund complementary treatment for Jessie. At Martin House our eyes were opened to the many challenges which children who have life-shortening illnesses can face, not least the ability to communicate. It was immediately obvious to us that music could provide a crucial means of expression for them, and our path became clear. No children’s hospice had ever experienced Music Therapy, so this became the starting point of our new charity.
Music has been recognised as a therapeutic tool for millennia, and across almost all cultures, but what is Music Therapy? It is a clinical intervention which uses musical sound, mostly improvised, to support a person’s psychological, emotional, physical and communicative needs. No matter how restricted a child is, Music Therapy focuses on what they can do and often elicits unprecedented meaningful interactions.
During our first five years, Jessie’s Fund was instrumental in establishing posts for music therapists at 14 children’s hospices across the UK. This observation from a staff member at Keech Cottage Children’s Hospice was typical of feedback we were receiving: ‘Since we have had a music therapist we have seen big changes in the children; relief of frustration and pain in some, having fun, using parts of their body and limbs that would normally be very limited. We would be lost without our music therapist.’ There are now over 50 children’s hospices in the UK, all of which Jessie’s Fund has supported in a number of ways, including providing annual short, practical staff training courses aimed at demystifying music-making.
We were thrilled when Victoria Wood agreed to become our Patron in 1999. She truly understood our purpose: ‘I was delighted to become a Patron of Jessie’s Fund because its mission seems to me abundantly clear, that music is there for everybody, it helps everybody, no matter what your physical limitations, your difficulties with vision or hearing, or communication. And that’s what Jessie’s Fund does. They make those things achievable.’
In 2006 it was time for Jessie’s Fund to move away from a room in our own house to a ‘proper’ office. We relocated to a spacious office at the Priory Street Centre, the home of the York Centre for Voluntary Service – still our base today. In the same year we developed an additional programme of work, in schools for children and young people with specials educational needs and disabilities.
During the first phase of our schools’ programme, initially named ‘Soundtracks’, specialist musicians worked in 10 schools (as far afield as Exeter and Aberdeen), using an atmospheric silent film to inspire the young people to create a musical soundtrack.There was a strong staff training element to the programme: knowing that our time in any school was limited, we aimed for longevity by enabling staff to continue with accessible elements of our work. We have now worked in close to 300 school settings.
Although we had partnerships with hospitals as far back as the late 1990s, the first hospital Music Therapy post we established ourselves was in 2018. Emma Peakman, Consultant Clinical Psychologist at York Hospital, wrote: ‘We have been delighted with the music therapy project within paediatric psychology. It has provided families with an alternative and creative musical medium to express and manage emotions. … It has benefitted children who may not be able to, or do not wish to, communicate verbally, by promoting and maintaining their emotional wellbeing.’
Victoria Wood’s untimely death in 2016 seemed to rock the nation. For us it was personal – she had been a schoolfriend of mine and a wonderful supporter of our work. After a year or so we felt we could move on, and we were delighted when both Maxine Peake and Trevor Pinnock agreed to become our Patrons.
Though it is not possible to do more in this newsletter than look back briefly at our first 30 years, I cannot omit the part our supporters have played in our story. Without the engagement of our Friends group, Trusts and Foundations, musicians dedicating concerts to us, individuals taking on sponsored challenges, and much more, none of this could have happened. A heartfelt thank you –we look forward to you coming with us on the next part of our journey.
