Wednesday 22 May 2013, 15:00 | By

Improving quality of life to young people living with life limiting conditions

CSL Invites

These young people are a ‘new’ population in healthcare – medical interventions are now making it possible for many children who would otherwise not have survived, to live on into early adulthood. These young adults are often reliant on very high levels of medical and practical support day to day: For example many of them will require 24/7 care and will use ventilators and other medical devices.

Victoria Lidstone

Living with a life limiting condition is hard to imagine isn’t it? Apart from having to live with the harsh reality that your life will be short, most young people will also have loads of symptoms that need managing and medicines to take, physio to work through and care regimens that take hours each day.

How do you balance getting on with it in the meantime? Getting on with life with significant healthcare issues is not easy. Society is designed for able bodied robust teenagers and young adults, and trying to get out there and live life can feel like an impossible dream. Many young people find they are isolated and spend a lot of time at home.

Technology is embedded into the lives of all young people more than ever before. The internet gives massive opportunities to join together and join in. Physically using computers and other devices is something that all of these young people can do- technology can provide solutions so that even those with the most physical and cognitive concerns can join in.

Creating realistic and desirable opportunities for young people whose main social contact is through technology is a great way of supporting creativity. Getting the young people themselves involved in development and design is fundamental to this programme, its no good making assumptions- teenagers and young adults will nearly always surprise you! So looking at carefully developing technology with their help and with the support of researchers is a great way forward- well done.

There has been much fundraising around children, and also around cancer, but the young people with life limiting conditions do not generally fall into these categories and funding is very difficult to come by. This group have a wide variety of diagnoses, such as neuromuscular, neurological, metabolic, respiratory and cardiac conditions: but they all have one thing in common, they all have life expectancies of only a few years.

These young people want to join in with life as fully as possible, and this is often very difficult but I think this project will help them do this. I look forward to seeing the results.

Dr Victoria Lidstone BM FRCP is Consultant in Palliative Care and All Wales Clinical Lead for Transition in Palliative Care.