Breathe On UK is a national charity dedicated to supporting the families and carers of young people who are life-dependent on mechanical breathing, or long term ventilation (LTV).

Such a situation is recognised as being extremely traumatic and emotionally, physically, and financially demanding: often leading to both nervous breakdown and partnership failure.

Recent research and medical estimates indicate that more than 1,000 children in the UK exist with this condition and that the number is increasing by some 15 per cent annually.

The charity was established in 2004 by Victoria Townsend, who is now the organization’s Chief Executive Officer (CEO). As the mother of a son, William, who has spent all but three weeks of his nine years of life on LTV, Victoria and her family have experienced at first-hand many of the problems and challenges associated with this situation.

She recognised that her own need for a focused source of information and encouragement, provided by specialist carers and parents who had personal familiarity and understanding of caring for a young LTV-dependent person, was not easily forthcoming and from research we know this view is shared by hundreds of others like her. The result was Breathe On UK.

Breathe On UK has published two booklets for parents and families with young people on LTV: the first provides information on the initial period of hospitalization; the second provides guidance in managing the unique challenges involved in caring for a young person on LTV after they leave hospital. 
Click here to access the Downloads page.

To date Breathe On UK has:

• Established a respite agreement in collaboration with the Association of Children's Hospices
• Been responsible for a bespoke oxygen delivery mask in conjunction with Respironics (Philips UK) which is now available off the shelf
• Worked together with Contact A Family - Legislation has now been passed to enable The Blue Badge to be given to families of LTV & Technology dependent young children under the age of two years.
• Provided Family liaison support in the South West
• Helped to re-create the statistics on families and children using tracheotomies

Breathe On UK is also:

• Ensuring our inter-active website is up-to-date.
• Instigating a “Find a Family” programme to help trace and support affected families, and to develop a database for communication and research.
• Developing a regional network of family support officers that incorporates a Helpline.
• Identifying and liaising with care organisations that provide weekend and holiday respite care for both parents and children.
• Drawing social and political attention to the social, emotional, and economic needs of this growing but much ignored minority group.
• Working with the NHS with a view to influencing nurse training