So here's the good news; the number of young people surviving life changing conditions (like cancer for example) is increasing. In fact in the UK the number has nearly doubled in the past decade, at least in part due to recent advances in the quality of medical science. So what's the bad news? The quality and quantity of palliative care being provided to support these youngsters isn't.
Stuck in a no man's land between paediatric care and adult services disabled adolescents have become a forgotten segment of society whose needs are simply not being addressed. The NHS reforms that came into effect in April this year did go some way to recognising the need for specialist care for this age group. The Teenage and Young Adult clinical reference group established in the reforms should help ensure that their needs are considered in future funding decisions, but the changes also raise the spectre of a possible loss in expertise in this area.
Ironically when it comes to the potential to really improve the life experience for these young people there has never been a better time. Digital technology has given us the opportunity to connect, create and share in a way that has never been possible before. For those who often have limited mobility it provides a link to communities and conversations that would previously have been impossible.
The ability to create and collaborate is something that should not be underestimated and it's something I am passionate about. When my mother was diagnosed with terminal cancer it was her love of the arts - and her ability to share that love with others - that helped her outlive her diagnosis. According to Cancer Research UK, "Art therapy can be a safe way for people with cancer and their families to explore emotions such as anger, fear and anxiety about the cancer and treatment."
It is out of this belief that Creative Skills For Life was born. A social venture and campaigning organisation exploring the interface between wellbeing, technology and creativity, Creative Skills For Life is designed to be a catalyst to promote healing and personal development. Our mission is to ensure that anyone that wants it has access to creative therapies and technologies that enable them to connect with other people and collaborate on arts based projects. The idea is to build a virtual meeting place that provides access to a variety of qualified tools to help them explore their creative potential, either individually or, by connecting to their peers, as a group. We are also engaged in building a body of research that helps validate the importance of art as a tool for therapy and healing.
And it isn't just about art. Digital technology and social media offer the opportunity to engage young people living with chronic illness; especially those facing potential isolating situations, in new, more meaningful and relevant ways, across a variety of areas including the delivery of palliative care itself. Adding a digital edge will also provide economies of scale, opening up opportunities for more interactive and personalised support. It will also empower young people to take greater direct control of situations that affect them, such as maintaining their social networks and school life during and after treatment.
Although Creative Skills For Life is currently focusing on the needs of young people, we recognise that digital tools and service innovations, which are originated through our programme, can also be repurposed to benefit wider, potentially international, communities living with long term conditions or other special needs.
The potential of digital tools in healthcare goes far beyond palliative care. We are reaching a tipping point with regards to the use of technology in our lives and increasingly healthcare is becoming a focal point in the digital revolution. More and more of us are using wearable devices to monitor how much we move and what we eat. We are already using digital tools to make our lives richer and we need to ensure that we are extending that function to the people that arguably need it most.
There is growing awareness that physical dysfunction often originates in mental and emotional issues. By providing a platform for youngsters to express artistic talent we hope to alleviate some of the stress and anxiety in their lives and extend the context in which they use social media to form not only a popular culture they can own, but an inspiring vision of the future.
And so what started as a palliative programme points towards a preventative future.