The lives of more than 3,000 seriously ill children who cannot breathe without ventilation support are potentially at risk as stocks of vital supplies run dangerously low across the UK. Health professionals and families supported by WellChild from across the UK are reporting shortages in supplies of consumables such as the bacterial filters, tubes and circuits needed to keep life-supporting ventilators functioning and hygienic.
WellChild is calling on the Government to ring-fence future supplies to ensure families get the supplies they need.
To address these shortages, extremely anxious parents are being told to reuse equipment for sometimes twice as long than previously recommended. These desperately worried parents are already under heightened pressure to keep their vulnerable children safe during the COVID-19 pandemic.
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. Whilst many are seeking safe alternatives and ways of reducing the risk, they are being forced to make impossible decisions to prioritise the most vulnerable. Many are also concerned about how long supply shortages will last, or if indeed they will get worse ahead of the colder, winter months, when a second Coronavirus spike could put further pressure on ventilator supply lines.
WellChild is calling on the Government to start prioritising the needs of children and young people reliant on long term ventilation and to:
- Make available stock within the system immediately available to this vulnerable group of children, young people and their families.
- Ensure future supply lines are protected and ring-fenced so that these families can get the future supplies they need, particularly in advance of the colder, winter months.
One child affected by the shortage is 12-year-old Harry Morgan from Liverpool who has cerebral palsy, other brain injuries and requires long term ventilation. His mother Sarah reports that two weeks ago she was advised to use the replaceable breathing systems and tubes attached to her son’s ventilator for twice as long as previously because of the lack of supplies. She said:
“I’m really anxious, because germs from when Harry coughs are now sitting in the tubing for two weeks instead of one. It feels like we are not a priority and I don’t understand where all the equipment has gone. If we run out of anything Harry will have to go back into hospital which will undo all the work we’ve done to have him home with us.”
The emerging crisis comes as research released in June by the Disabled Children’s Partnership shows how disabled children and their families have been forgotten during the COVID-19 pandemic with vital care and support withdrawn. The survey of 4,074 parents showed that in 76 per cent of cases support has stopped altogether, leaving parents and young siblings taking on all care responsibilities around the clock.
Tara Parker, Clinical Director of Programmes for WellChild said:
“Across the UK, more than 3,000 children and young people are reliant on ventilators to help them breathe. These are challenging times for everyone, but to hear that families have been running short of vital equipment shows once again that this vulnerable group has been overlooked. Whilst we appreciate that there was a sudden high demand for ventilator supplies, the ventilation needs of these children have long been understood by those involved in their care. It is unacceptable that provisions have not been made for them. We must protect future supply lines for this vulnerable group, especially for the winter and if a second Coronavirus spike creates further demand for these important supplies. Through our WellChild COVID-19 Direct Response Service we are doing everything in our power to bring these families safely through this unprecedented crisis. This latest development is literally putting children’s lives at risk and must be urgently addressed.”
During the COVID-19 crisis, WellChild set up a crisis response service to source and distribute Personal Protective Equipment (PPE) to shielding families so that they can let external carers back into their home. The charity has now distributed more than 150,000 items of PPE equipment to vulnerable families across the country since the crisis began.