Breathe On UK understands – and exists to offer support.
OPPORTUNITIES FOR RESPITE
- Breathe On UK have been able to offer a limited number of short break holidays for families. Please contact us for further information, or an informal chat.
- We are sometimes able to fund awayday breaks for parents and siblings, to allow “time out”. Again, please call or email to discuss current availability.
- We produce a specific resource for siblings and/or peers – a colouring book which gently explores and explains the concept of long term ventilation. The story is narrated by Stephen Fry, on an accompanying CD. Available free of charge to our registered families, or to schools suporting an LTV child
- If there is a specific small equipment need, Breathe On UK may be able to assist. – each case is considered infividually, by the Trustees and their decision is final. Example: support has previously been agreed for items such as a laptop to allow an LTV child, at a mainstream school, to continue her studies when unable to attend class.
Please note we are not able to fund large equipment
At the start of the journey, families may just want to talk with people who have been through a similar experience, or perhaps need help with explaining very difficult concepts to siblings
We are at the end of a telephone or email, to offer practical information, or sometimes just a listening ear.
- We take calls in the office, if parents just need to express their fears and talk about their feelings – which are often overwhelming. A listening ear can make a world of difference.
- An Online Forum, where we hope parents of LTV children and young adults can connect with each other.
Once a treatment programme has been established, there will be a number of possible care options. An LTV child may stay in a Paediatric Intensive Care Unit (PICU) or adjacent ward, be transferred to another hospital/care facility or work towards hospital discharge and transition to home care.
At all stages Breathe On UK is there to support families and carers.
We are never able to offer medical advice, or opinion, but can offer a wealth of experience to assist with the practical matters that can seem so daunting.
- Local authority grants
- Equipment that makes looking after an LTV child easier
- How to get free nappies
- How to claim for travel costs
- Community support
- How to involve siblings in care programmes
- Key requirements for caring for a child at home
- Special equipment suppliers
Please contact us by clicking here and sending us an enquiry, or telephone 01258 820274 for an informal discussion
A note on our criteria and conditions
Families caring for a child or young adult up to the age of 21, on long term ventilation or oxygen therapy,and who are registered with Breathe On UK, may apply for one of our funded opportunities. We require that all applications for funded support, such as Time-outs, Short Breaks or Equipment, are supported by a letter from the relevant GP Health Visitor or Social Worker, and we do spend some time talking with our families before any application is considered.
Each application is considered by our Board of Trustees, and a decision is made against the fundraising monies available. The Trustees decision is final. While in some cases, families might be considered suitable for more than one funded option, it is more likely that the decision will rest on an outcome and benefit which bests suits the whole family.
Short break holidays for the whole family, including the supported child or young adult, require the medical approval of the Consultant responsible for the case, and medical assesment may be required. Breathe On Uk cannot be responsible if medical clearance cannot be given, nor if change to medical status means that a planned break cannot take place. Breathe On UK do not provide care workers – medically trained or otherwise. Families are, atl times, responsible for ensuring the necessary care support provision is in place.