Video report by ITV News Correspondent Juliet Bremner
Thousands of seriously ill children are being put at risk due to shortages of ventilator equipment, a charity has warned.
WellChild, the national charity for sick children, said around 3,000 families with children who use ventilators are facing shortages of equipment such as bacterial filters and tubes which need regular replacement.
Due to the difficulties in accessing equipment, some parents are being told to use their supplies for longer than previously recommended, with some families told to use them for twice as long as usual.
Parents have expressed fears of infection, which may lead to potential hospital stays, long-term damage to the child’s health or death.
Dawn Lossau, 48, said she is facing a shortage of valves and circuits for the ventilator used by her 15-year-old daughter Maisie.
Maisie, who lives with her parents in Norfolk, has used a ventilator for the last four years after surgery to remove a brain tumour left her paralysed.
Parts of the ventilator are normally changed daily or once a week.
However, some parts are now being replaced either every three to four days or once a fortnight.
Ms Lossau said: "There’s only so much recycling you can do with medical equipment, it’s sterile for a reason, to protect the people who are using it.
"There’s nothing I can do to make this situation better.
"It’s not like I can nip down the supermarket and buy them, this is specialist equipment that should never run out."
Ms Lossau expressed her concern about a second wave of Covid-19 putting additional pressure on the equipment supplies.
She continued: "If Maisie picks up a chest infection, it’s not just a straightforward ‘let’s give her some antibiotics and not worry about it’, it can result in an emergency stay in hospital and Maisie has to go into intensive care because of her situation."
"Not having those supplies means we will be putting extra pressure on the NHS resources to have Maisie admitted to hospital for an infection that takes resources to treat and can be life-threatening.
"This is life and death for us and for lots of other families and it’s not just about children, there are adults out there that will be facing the exact same thing."
Tara Parker, clinical director of programmes for WellChild, called on the government to ring-fence and secure the supply of consumable ventilator parts for these families, particularly ahead of the winter.
She said: "Because children haven’t been massively at risk of Covid, I think we might have underestimated the collateral damage to children, particularly in very vulnerable groups.
"The fundamentals of it are there just aren’t the parts, there’s a global demand and I suppose the biggest question we would raise as a charity is why was that stock not protected?
"I’m quite fearful going into the winter about what’s going to happen."
The Department of Health and Social Care is monitoring shortages of equipment, as well as securing supplies.
A department spokesperson said: "We understand how challenging this period is and we are doing everything we can to support patients, led by clinical advice.
"Covid-19 has caused a significant increase in demand for clinical consumables and has disrupted international supply chains.
"We have put in place a range of measures to address these challenges, including making it easier for clinicians to report shortages and identifying opportunities to open up new supply options and using additional brands."