An NHS trust has told disabled people with life-limiting conditions that it will no longer supply replacement anti-bacterial filters for the ventilators that keep them alive because stocks are running low and they are being reserved for patients with coronavirus.
Horrified patients with muscular dystrophy say that Royal Brompton and Harefield NHS Foundation Trust (RBHFT) is putting their lives at risk by prioritising non-disabled people with COVID-19 over those with long-term health conditions.
Disability News Service (DNS) has spoken to two disabled people who rely on the filters to protect them from infection while they use their ventilators, and have both been told that as stocks are running low the trust will no longer give them replacements.
Both have been told that the trust’s remaining filters are being directed instead towards patients with COVID-19.
One of them was told in an email: “With the recent Coronavirus outbreak unfortunately, we have been instructed by management not to send any antibacterial filters until further notice.
“The limited stock we have is being directed towards patients infected with COVID-19.”
They have been told either to run their ventilators without filters or to continue using old ones.
It is the latest in a series of cases in which NHS managers or healthcare professionals have appeared to discriminate against disabled people with long-term conditions during the pandemic crisis.
Among incidents that have caused concern have been a care company that said GPs had written to three of its services for people with learning difficulties to say they had decided that all their service-users should be deemed “do not resuscitate” if they became ill with coronavirus.
Another was a Welsh GP surgery which wrote to patients with life-limiting conditions asking if they could complete “do not attempt resuscitation” (DNAR) forms on their behalf, partly so that “scarce ambulance resources can be targeted to the young and fit”.
DNS reported in March how the National Institute for Health and Care Excellence had been forced to update guidance on which coronavirus patients should receive intensive care treatment, after concerns raised by disabled activists.
The previous week, DNS had revealed how an NHS critical care consultant appeared to suggest publicly that he and his colleagues would not attempt to resuscitate many older and disabled people if they became seriously ill with coronavirus.
Now concerns have been raised over the use of ventilator filters at RBHFT, and potentially at other trusts across the country.
Hannah*, one of those refused replacement filters by Royal Brompton and Harefield, said: “Filters are a vital part of using the ventilator as they clear the air we take in, which in turn keeps our carbon dioxide levels down.
“This is putting the lives of many at risk.”
She said a friend of hers, who also receives treatment at the trust, had also been told that anti-bacterial filters were no longer being given to people with muscular dystrophy because they were being reserved for COVID-19 patients.
Hannah said she had been receiving care from the trust for many years and had never previously been told that there were no available replacement “disposables” such as filters, or the masks and hoses she also needs to wear while using her personal ventilator.
She has also been told by her respiratory consultant to use her ventilator 24 hours a day throughout the pandemic – compared to 20 hours a day previously – which means the filters will become dusty and contaminated more quickly.
Last year, when Hannah’s oxygen levels were low, she was told this was partly because the filter was filthy and needed changing, as it had not been replaced for four weeks.
David*, another of those who asked the trust for some replacement filters, said he was told – twice – that an email had been circulated among Royal Brompton and Harefield staff to say their stock of filters was running low and so they were being reserved for COVID-19 patients.
David, who has just one functioning lung and has been using the filters for more than 10 years, said he had managed to source some replacement filters privately, but was still angry at being seen as a lower priority for life-preserving treatment than COVID-19 patients.
He said he believed his rights had been breached.
He said: “I feel I am being pushed to the bottom of the list below other sick people who have never used this equipment before.
“I understand they need it because they are sick but there are also a lot of people who are sick who don’t have COVID-19 and have been relying on ventilators their whole life.
“I’m not saying people with COVID-19 shouldn’t have the equipment, I’m saying please don’t take it away from people who need it as well.
“I’m relying on medical equipment for the right to live. When I was diagnosed with my condition I was in quite a serious way, I was very low on oxygen, very high on carbon dioxide, and I was relying on my ventilator to keep me alive.
“Even though I only use it at night, I would get a build-up of carbon dioxide in my blood again and my oxygen levels would drop if I didn’t use it.”
He added: “They haven’t sent any letters out to me to say that this [lack of filters] is an issue… and they haven’t explained how it could affect my health.
“That’s not good enough. If I don’t need them, why was I given them?”
A spokesperson for the trust originally claimed in a statement that it was “sending patients filters for their ventilators as and when they are needed and especially when there is a clear and urgent need for a new filter”.
She said the “pandemic and issues around supply encouraged a review of all our processes but we would never compromise the safety of one group of patients over another”.
After this reply was challenged by DNS, she said the trust had “reduced the numbers of filters being sent out and patients have been asked to extend the life of those they have, due to the numbers available in the system”.
She also said that the trust regretted if it had given the impression that it had compromised the safety of one patient group over another.
But David said the trust’s statement was “completely not true”, and insisted that he had contacted the trust twice and on both occasions had been told the filters were not being supplied and to use his ventilator without a filter, and that this step was being taken because the remaining filters were being reserved for COVID-19 patients.
He said that one of the staff he spoke to had told him that this message – not to give the filters to patients with muscular dystrophy because they were being reserved for COVID-19 patients – had been included in an internal memo.
DNS has also seen a blog by another disabled person with muscular dystrophy, Mitch Coles, who receives care at another hospital trust, and has been told he will need to start using his ventilator without a filter once his existing supplies run out.
He said: “I was told there was ‘no evidence’ that filters need to be used in a home environment.
“What’s the difference between a hospital and a home environment in terms of filter use?
“If they aren’t necessary, I want to see evidence that says so.
“If they aren’t needed, then what are they made for and why have I been using them for my machines for the past five to 10 years and been told to regularly change the filters, especially when I’m unwell?”
Disabled campaigner Fi Anderson, who has muscular dystrophy and receives treatment at a hospital in Manchester, said she believed that people with progressive muscle-wasting conditions were facing discrimination over the filter issue, particularly as many of them have also been targeted by GPs to agree DNAR forms “to take the strain off the NHS”.
She said: “I can’t help but feel we are being discriminated against for our human right to have a fighting chance like everyone else.
“Like many others with progressive muscle-wasting conditions, I wasn’t expected to reach adulthood but thanks to these machines I have and I have a great quality of life despite the extra medical equipment, being wheelchair dependant and needing carers.
“I manage my own team of personal assistants, I have a job with a non-profit close to my heart that is rewarding and that I love, I flew the nest and live with my fiance and had children who didn’t inherit the condition.
“I did everything doctors told my parents I’d never do, yet it may not be enough to prove I’m worthy during these uncertain times.
“I have every reason to stay alive [but] I could easily be seen as just a case number, with an incurable condition with no quality of life because I use a ventilator. A drain on the NHS.”
*Not his or 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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