A second NHS trust in England has refused to provide people with neuromuscular conditions with the replacement ventilator filters that help keep them alive, because they were being reserved for patients with coronavirus.
Last week, there was outrage on social media after Disability News Service (DNS) revealed that Royal Brompton and Harefield NHS Foundation Trust (RBHFT) in London had told people with muscular dystrophy that they could not be sent new anti-bacterial filters for their ventilators because they were needed for patients with COVID-19.
Although RBHFT did not admit it was prioritising those with coronavirus, an email sent by a trust staff member stated that colleagues had been “instructed by management not to send any antibacterial filters until further notice” and that the “limited stock we have is being directed towards patients infected with COVID-19”.
Now an email has emerged which shows a second NHS trust – University Hospitals Bristol and Weston NHS Foundation Trust (UBWFT) – made a similar decision.
This email was sent to Mitch Coles, a campaigner with muscular dystrophy, who had questioned why the trust made the “totally unacceptable” decision to stop sending him replacement filters.
He was told last week in the email that there was a “national shortage” and that the filters were “essential for acutely unwell inpatients with coronavirus with the aim of reducing the spread of coronavirus between patients and healthcare workers during the peak of the pandemic”.
He was told: “We do not yet have [the] supplies available to routinely start sending out filters for ventilators again, however I have taken your request forwards for discussion and I will get back to you once it has been decided if we have the resources available to start to at least look [at] this on a case by case basis.”
He and Angela*, another person with muscular dystrophy who receives services from the trust – who Disability News Service has also been in touch with this week – were both told to use their ventilators without an anti-bacterial filter until the shortage was over.
Angela said she felt “cheated” by the trust.
She said: “When you are provided with the machine you are normally advised on how you should take care of the non-invasive machine, and to keep yourself free of bacterial and chest infections you need to change your filters every so often.
“I normally change mine once a week. However, when I am using the machine with the humidifier you need to change the filters every single day.”
She said the trust’s actions were “very wrong”, and she added: “I called them on Monday and I was told they will send me some filters. I am still waiting. Our lives are being put at risk.”
The trust admitted yesterday (Wednesday) that it had stopped sending out filters in order to reserve them for COVID-19 inpatients, but that it would soon begin sending filters to outpatients like Mitch Coles and Angela again.
Coles said: “I’m angry that my own local NHS trust is giving out such awful advice in the first place and that they are quick to backtrack when approached on the matter of bacterial filters.
“It’s still not completely clear what their stance is.
“I feel I’ve been provided with a good service up until now.
“Coronavirus has come along and NHS trusts across the country have shown their true colours by deeming people like myself expendable.
“It’s respiratory roulette and we are losing out.”
The trust yesterday (Wednesday) admitted and defended its actions, and it said it would now be able to restart supplying filters to outpatients who use non-invasive ventilation.
A spokesperson said: “The trust temporarily stopped providing replacement anti-bacterial filters for non-invasive ventilation patients to outpatients due to a global shortage of stock.
“The use of routine filtering with home devices is not a compulsory recommendation by the manufacturers but we do, and will continue to, offer this for our patients.
“During this time we have continued to advise patients on the safe use of their home devices according to manufacturer’s guidelines, and have provided additional support through virtual clinics and some home visits.”
She added: “It is essential that ventilators are filtered when in use with a patient who is COVID positive to reduce exposure and virus transmission and protect patients and staff.
“We have used our stock appropriately based on clinical risk whilst we sourced more filters.
“The trust has since received more stock and is in the process of contacting patients to distribute these.”
The charity Muscular Dystrophy UK declined to comment on the trust’s admission, or to criticise its actions.
But Rob Burley, director of campaigns, care and support at Muscular Dystrophy UK, said in a statement issued earlier in the week: “Ventilation equipment is a vital part of the support that is required by some people who live with muscle-wasting conditions.
“It is important that people who use ventilation equipment are able to access replacement parts like filters, and trusts need to ensure that this is possible as they manage supplies in the face of increased demand.
“We are seeking assurances from trusts that the safety of people living with muscle-wasting conditions is not being put at risk, and urge anyone who experiences difficulty in getting the supplies they need to contact us.”
*Not her real name
**Links to sources of information and support during the coronavirus pandemic include the following:
The Department of Health and Social Care
National Survivor User Network
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