Breathe On UK

02/06/2020

This week is Volunteers Week and Breathe On UK could not exist without our fantastic volunteers. We really appreciate your time, energy and efforts to keep our charity going.

This week exists to celebrate all the volunteers and the time they give - time that equates into massive sums of money if people were to be paid. The time and effort they donate keeps our charities and services afloat in so many ways. This week is our way to say a huge THANK YOU to all who volunteer.

Team Breathe On UK

31/03/2020

https://www.stokesentinel.co.uk/news/stoke-on-trent-news/specialist-unit-critically-ill-children-3992114

Poorly youngsters will now be treated at Birmingham Children's Hospital

24/03/2020

I have to go to the hospital tomorrow ( H just been rung) to pick three months up of supplies for G. It’s the ventilators tubing etc which apparently are going to become short. It truly is a scary situation especially having a grandson that requires a ventilator to survive.

24/03/2020

SHARE TO EMPOWER AND SAVE LIVES

20/03/2020

Dr Martin Samuels Chief Medical Advisor Breathe On UK statement "Breathe On UK intends to get as many ventilated children out of hospital back into the community as their Beds will be needed for Adult COVID

14/03/2020

I had the great pleasure of meeting and speaking to Stephen Hawking a number of years ago at the Breathe On UK launch held by Victoria Townsend. There are some similarities between his disease and Tristan’s though also some differences as Tristan has a lot more movement since taking riboflavin. He was a great inspiration to those with disabilities/chronic illness. It was wonderful to meet him and great to have had the opportunity to speak to him about my son. Many of you know that he was a fantastic scientist, but only a few will know that he was a patron of the charity Breathe On UK which has done so much for long term ventilated children such as Tristan. When talking about the work the Breathe On charity does he said,
“Whilst many children are kept in hospital initially, it is the families who care for sufferers at home that find their lives, home and life plans all having to be reassessed. It is at this time you need to be able to make contact with families in similar circumstances to gain support and knowledge of how to handle situations”. RIP Stephen Hawking and thank you for being patron of such a special charity and for being such an inspiration to us all.

13/03/2020

CV19 - how to we cope?

As we watch news reports about people fighting over toilet rolls it is impossible to avoid a rising sense of fear and despair about the CV19 pandemic, especially as we ourselves or our loved ones fall into the most at risk category. So what are e facts?

Martin Samuels, Consultant Paediatrician (expert in paediatric respiratory medicine) and Chief Independent Medical Advisor of BreatheOn UK has provided the following advice.

I have given out the following advice to SMA1 / CCHS families with LTV.

In general, children seem to be only mildly affected by the coronavirus.

Individuals on long term ventilation are not necessarily at increased risk of acquiring viral infections, like the coronavirus.

Individuals with medical conditions that make them prone to respiratory failure and lead to a need for long term ventilation, are more at risk from severe consequences of any virus or bacteria if they are under-ventilated. *

But if the individual is well-ventilated, the risks are very low that a virus or bacteria will cause serious respiratory illness.

*Contact your Repiratory team for advice. Do not change the settings yourself.

So what can we do to avoid or mitigate the chance of contact?

Hygiene

The virus can be deterred by sensible hygiene practices using soap and every day cleaning products. Anything that cuts through fat cuts through the virus. So wash your hands. But don’t stop there. Wash all surfaces including remote controls, mobile phones, iPads, door handles, taps, letterboxes with hot soapy water.

Cough into a hanky, throw it away and WASH YOUR HANDS. If you don’t have a hanky, cough into the crook of your arm, then put clothing in wash as soon as practicable.

Social contact

Avoid physical contact with other people. Many of us will have a constant stream of other people in our homes, carers, nurses, therapists, pharmacy deliveries. Where practicable ask anyone who is at risk of infection to avoid your home. The pharmacy deliveries can be left outside your door. If you have access to disposable gloves, use them.

If your Trachy/LTV child is at school speak to the principal about keeping them home from school. Under the circumstances they should be sympathetic although you may need a doctor’s certificate. If your child has able bodied siblings make sure that they follow proper hygiene measures. We all know how many germs small children bring home from school.

Unless absolutely necessary try to avoid both GPS surgeries and hospitals.

Seek advice from professionals

If you have any worries contact your Respiratory team for medical advice over the phone or via email.

Stay safe.