Ventilation supplies fears for mum
Her daughter has respiratory distress condition
A MUM from Loughborough has joined national children’s charity, WellChild, in warning the lives of more than 3,000 seriously ill children who cannot breathe without ventilation support are being put at risk as stocks of vital supplies run dangerously low across the UK.
Lidia Sherwood is mum to 11-yearold Maddison who has Spinal Muscular Atrophy with respiratory distress which means she needs help from a ventilator to breath.
During the pandemic supplies of consumables such as the bacterial filters, tube and circuits needed to keep her life-supporting ventilator functioning and hygienic ran low.
Her mother Lidia is one of many families supported by WellChild as they care for their children at home who along with health professionals from across the UK have reported shortages and concerns that they may be sidelined again in a second wave of COVID-19, particularly during the winter when their children are most at risk of serious infections.
Anxious parents like Lidia are being told to reuse equipment for sometimes twice as long than previously recommended.
Concerns have been raised by child health professionals, including many of WellChild’s network of 43 specialist children’s nurses, who have reported that they are experiencing significant issues accessing ventilation supplies.
This is potentially putting lives at risk with the danger of damage or infection to these children. Many are also concerned about how long supply shortages will last, or if indeed they will get worse ahead of the colder, winter months.
WellChild is calling on the Government to start prioritising the needs of children and young people reliant on long term ventilation and to make equipment and consumable stocks immediately available.
The charity is also calling for a robust long-term supply of stocks to be ring-fenced for these families, particularly in advance of the colder months.
Maddison has already defied medical expectations that she would never talk, eat or even support her own head. With her walking frame or wheelchair, Maddison is a lively little girl who under normal circumstances enjoys school and spending time with her friends.
To keep her ventilator working a range of circuits and bacterial filters are needed, all of which have been subject to delays and uncertainty during the pandemic, leaving her family feeling that her needs have not been prioritised.
Lidia said: “I feel that as a family we’ve been forgotten about and that children like Maddison don’t matter.
“I don’t feel confident being told to extend the use of these consumables when all this time we’ve been told to change them weekly and am really concerned about what will happen in the winter when Maddison’s health is already at greater risk.”