Stop Oxevision

On Monday 26th of February, NHS England invited us to a ‘Digital Technologies’ conference in Sheffield. For purposes of transparency, we wanted to share our presentation from the event here. Several StopOxevision members attended, both openly and anonymously, and Hat, Nell and Sophina gave the following presentation.

The conference included presentations from the British Institute of Human Rights, Alexis Quinn from the Restraint Reduction Network, and the Mental Health Policy Research Unit, among others. All presentations demonstrated the unlawful, unevidenced and unacceptable uses of digital surveillance on wards. This presentation is based on months of survivor research.

StopOxevision Presentation, Sheffield Digital Tech Conference 26/02/2024

[Hat introduces themself as a member of StopOxevision]

Throughout this presentation we will discuss sexual abuse, coercion, and abuse from psychiatric services. It probably says a lot that we have to start with this warning.

We’re StopOxevision – and the ‘stop’ is in capitals, underlined and flashing red. We are not here to talk about how mental health services can justify or excuse the ways in which they abuse us. We oppose the use of Oxevision and similar video monitoring and surveillance technologies, CCTV and body worn cameras. We do not consider these technologies acceptable or in any way compatible with safe, trauma-informed and compassionate healthcare.

Oxevision is a device which is located in patients’ bedrooms which uses a camera and infrared sensor to take a video of patients and allows staff to remotely view patients in their rooms and take recordings of their pulse and respiration rate if the person is lying still. 

The technology was awarded funding from the NHS innovation accelerator and was rapidly adopted by mental health trusts across the country despite the lack of evidence for its safety and effectiveness or consideration of its legal implications.

Oxehealth, the company who make Oxevision, now market the product in the US and globally, boasting that it is used in the NHS. The company have also trialled the use of the technology for space tourism all thanks to having such extensive access to patient data without individuals’ consent, to build and maintain their algorithms. 

We often hear from people who say “but having a camera would protect patients from harm from staff” but whilst the recorded footage can be saved and can be used as part of criminal investigations and prosecution of patients, patients have no control over the footage, and we’ve heard that footage has gone missing, or cameras have conveniently not been working when patients requested the footage.

What have we heard from patients?

We’ve heard harrowing stories from people up and down the country who’ve described Oxevision as intrusive, dehumanising, retraumatising and having increased their distress. We have spoken to people who spent entire admissions sleeping on the bathroom floor, in communal areas, even in the garden, to avoid the camera, despite begging staff to turn this off.

Oxevision has had a long-term impact on some of these people. One person told us they still don’t sleep in a bed after 8 months and multiple have said they look for cameras when they go in certain rooms.

Almost everyone we spoke to had misunderstandings about what the technology did – understandably when the information provided by Oxehealth and NHS Trusts is deliberately unclear. For example using terms such as ‘optical sensor’ rather than camera. Many people have not been aware they were being monitored by a camera and only became aware of this after leaving hospital, sometimes even as a result of our campaign.

People were not aware of the level of data that was being collected on their activities and even less that sensitive data – that is video of them in their bedrooms – could be shared with a private company or even passed to other agencies like the police to initiate criminal proceedings. This is extremely concerning and shows that patients have been filmed covertly and deceived or misinformed about how their information is being used which is a breach of data protection laws.

We could do a whole presentation on what people have told us are the harmful impacts of Oxevision, both short and long term. Some members of our campaign have lived experience of the technology, or similar camera based surveillance in psychiatric wards. It is hard to navigate power within these types of events and consider how to make sure we will be taken serious as Mad people and not have our knowledge and experiences dismissed as biased. It’s also a challenge to navigate what we are and aren’t comfortable with sharing when we both need people to hear and take notice of our experiences but should not have to disclose our own experiences, sometimes the worst of our lives, in order to be humanised or make NHS officials recognise that we deserve our most basic human rights. 

So I will now share a video of Sophina, a member of StopOxevision, sharing her experiences.

[Sophina’s slide plays]

I’m now going to talk a bit about what we’ve learnt about surveillance in mental health wards. We began our campaign by conducting our own surveillance and monitoring of the practices of NHS trusts across England. This involved piecing together reports from patients across the country, responses from Freedom of Information requests, and the information trusts have available on their websites. This task was made incredibly difficult, especially where trusts have failed to respond to us or been evasive. It’s almost like you know what you’re doing is not acceptable.

According to our information, Oxevision is used in half of mental health trusts across England. However, there are 44 trusts using some sort of surveillance – so Oxevision and/or bedroom CCTV, CCTV in seclusion and 136 suites and body worn cameras. Black Country NHS said they’re installing Oxevision in bathrooms and many seclusion rooms and 136 suites also have cameras within the bathroom areas.

The information we received seemed to reflect Oxevision having been rolled out quickly and without the scrutiny needed. In many cases documents contradicted themselves and made significant claims without evidence or rely on the fact that other trusts use Oxevision as a justification, without conducting their own review of its safety or legality.

Despite that, millions of pounds have been spent on Oxevision alone with Essex partnership, who use Oxevision on almost all their wards including CAMHS, having spent nearly 2 and a half million pounds.

Only 7 of the 25 trusts had done an equality impact assessment and of these only 2 identified any risks. Midlands Partnership include a human rights impact consideration within their assessment but state Oxevision is highly unlikely to have any impact on patients or employees human rights.

This is extremely concerning to us given we know this has the potential for really significant and disproportionate impacts. For example, Oxevision would enable patients to be observed during prayer and the way footage and videos can be used and saved for criminal proceedings risks perpetuating the existing harms mental health services inflict towards minoritised ethnic groups. 

The technology also presents significant risks of gendered and sexual harms as there are no appropriate safeguards in place to prevent staff misusing the technology to view patients, including children, when undressed. For example, Tees, Esk, and Wear Valleys NHS trust outline Oxevision risks transgender patients being outed if they are observed when undressed as well as acknowledging the risk of staff misusing the system, yet still use this on a blanket basis and feel these risks are managed by giving staff some e-learning to do. 

We reviewed the Trusts posters, none of the posters explained that data is shared with Oxehealth, only 2 informed patients the technology tracks when and how often they go to the toilet and 7 didn’t even include the word camera, instead using vague and confusing terms. East London don’t even have a poster.

Oxehealth have a disclaimer on their website saying the technology should not be used replace therapeutic engagement yet at the same time advertise the benefits of the products as saving money through reduced staff spending. North Staffordshire refer to Coventry and Warwickshire as a case study to justify reducing the equivalent of 2.24 band 3 HCA per ward.

Whilst there’s countless examples which we could and have highlighted the general feeling is that this approach to local trusts adopting new technologies is hasty and lacks the evidence-base and consideration required, especially given the significant risks and huge invasion of privacy of Oxevision.

I will now pass to Nell.

[Nell introduces herself in a pre-recorded segment and explains she can’t be at the event today]

There are some things that are fundamentally unchangeable about Oxevision that we believe make it incompatible with basic patient rights, the therapeutic relationship and least restrictive principles. 

For a start, regardless of if Oxevision is turned on or off, there is a light that glows on the device. So the system looks exactly the same when switched on and active, or turned off. We have spoken to people who have been allowed for Oxevision to be turned off only for it to be turned on again without their knowledge. We ask you whether you’d be happy with a camera in your bedroom with a red light on, that someone else had complete control over? The potential psychological damage of being surveilled, or believing you could be being surveilled, is completely incompatible with good mental health even if you aren’t in a mental health crisis. Cameras are incredibly distressing for people experiencing paranoia and many survivors of trauma. Trauma-informed care and cameras in bedrooms are just not compatible.

We also have concerns that it is not possible to use this technology safely in the context of wards as they are – high acuity, overstretched staff and often high staff turnover, and agency staff use. There have been recent, tragic deaths of patients, where in each case staff had not followed procedures to view the CCTV or respond to the Oxevision alerts properly. And this has led one coroner to raise concerns about Oxevision within a prevention of future deaths report to Esssex Partnership Trust, stating specifically that she believed Oxevision was being used instead of in-person observations and had concerns that there was no way of knowing which staff had interacted with the system or reset alerts.

In the context of this, it’s even more worrying that Oxevision is being suggested as a solution to improve the safety of inpatient wards and multiple trusts explicitly mentioned that they are going to start using Oxevision in their response to prevention of future death reports – usually after original observation policies were not followed. Why should we believe the same staff will follow different, perhaps more complicated policies around digital technology? Technology can be a convenient way for trusts to deflect and to be being seen to take action, which risks the real work to improve patient safety culture never being done. Oxevision and other digital technologies end up becoming absorbed and used as part of the poor practice in a ward culture. 

Oxehealth has promotional material called ‘Stories From the Ward’ where they explain how their product is being used. You can see here one example where a nurse speaks about a woman in distress. She says:

“I used Oxevision to take an observation of Patricia in her room, and I saw that she had a plastic bag tied around her head. I immediately went to her bedroom and removed the plastic bag and she appeared to start having a seizure. When she came around, she said she couldn’t see or hear anything.

Previously, Patricia has exaggerated how ill she had been. We decided to continue observing her in her bedroom, using Oxevision. We took pulse and breathing rate measurements which were in the normal range, and her presentation wasn’t consistent with having had a seizure.”

And she goes onto say that this allowed them to save valuable time for the doctor and the A&E staff.

Oxevision being used to withhold urgent medical treatment from a patient is extremely concerning regardless of if staff have made a judgement that she’s exaggerating. But also, choosing to observe this patient remotely rather than talking to her and building a relationship, is a missed opportunity. There’s multiple examples like this in the ‘Stories from the Ward’ – in one they leave a patient with a ligature round their neck to give staff time to ‘create a plan’ to go into the room because it looks loose on the camera. There’s multiple that talk about patients with a personality disorder label in stereotypical ways, including using the technology to reduce patient need or ‘dependence’ of staff attention by taking them off 1:1 observations to stop ‘reinforcing the negative behaviour’ of self-harm. This is one of Oxehealth’s main selling points to trusts – the reduction in need of 1:1 observations. But that is also potential reduction in opportunity for human connection and relational care for patients.

This leads on to another worrying aspect of Oxevision, and camera based surveillance more widely: the way it is being used to punish and ultimately even criminalise patients in distress. From our FOI requests, we saw that multiple trusts mentioned reduced cost of litigation in their business cases. Hertfordshire Partnership Trust explicitly note in their Data Protection Impact Assessment that the ‘covert’ element of the monitoring could be distressing yet don’t consider it as interfering with the Human Rights Act because of its role in potentially investigating criminal activity. Is it a mental health service’s job to pre-empt investigating and potentially punishing people who are unwell or vulnerable? And because staff are the ones with control what to save from the footage, and the rest is autitomatically deleted after 24 hours, the incidents will be totally taken out of original context and told totally from staff perspective. Oxevision has no sound so won’t pick up staff verbally abusing patients for example, or escalating things during a restraint. People having autistic meltdowns, flashbacks, certain states of distress or psychosis – all of these can all lead to situations where someone lashes out in a restraint, are ultimately criminalised, and their life changed forever.

Much of Oxehealth’s literature on Oxevision claims it improves privacy and dignity for patients by allowing them not to be ‘disturbed’ by observations. This is absurd and relies on the dishonesty that just because patients can’t see observations happening, doesn’t mean they aren’t being monitored. Rotherham Doncaster and South Humber NHS Trust recognise the risks in this in their Oxevision policy where they note staff should not continue with an observation if a patient is undressing, masturbating or privately observing religious beliefs.

Even if staff do follow that instruction and click off the live feed, it’s far too late: privacy and dignity have not been maintained. It is also a huge violation of trust with the patient. And how would we know if a staff member hadn’t turned it off? Oxehealth say staff can only access the clear live video for 15 seconds at a time. But we’ve found nothing in the guidance to suggest there’s a limit built into the technology that prevents them doing this multiple times.

So in the context of all this, we are hugely concerned by the framing of potential ‘choice’ around Oxevision – if you do end up on a ward where you’re even allowed that choice. This is not an inconsequential thing for patients. This is not asking them whether they want breakfast or not. And to frame it that way is dangerous because it is by design an opt-out system. It is already in the room, light glowing: its presence is coercive.

So staff telling us anecdotal stories in response to our campaign about patients preferring Oxevision does not persuade us. Oxehealth using Experts by Experience who may or may not have had experience of Oxevision does not persuade us. This is not nearly enough to justify a highly restrictive practice and worryingly un-evidenced technology. If Oxevision is fundamentally harming and stripping the rights of some patients, then it should not be used at all, and it’s bad for all of us. 

[Hat resumes presenting]

So as Nell has outlined, the language of ‘consent’ and ‘choice’ around Oxevision does not acknowledge the structural harm this technology is inflicting on vulnerable people. We need to take a rights-based approach to the issue of Vision Based Monitoring and safeguard the many whose human rights are at risk.

One of our biggest concerns is that the outcome of these discussions and principles will be to say trusts just need to get informed consent from patients unless they’re under section or assessed to not have capacity or be detained under the mental health act. Given the lack of robust evidence for the effectiveness or safety of Oxevision it does not seem proportionate to suggest this is in anyone’s best interests whilst the intrusive nature of the technology means it cannot be seen as the least restrictive option. It is also not acceptable to justify that sharing an individuals’ highly sensitive personal information with a private tech company is in anyone’s best interests.

It is also concerning that trusts seem to claim they have a consent process in place but this really means that Oxevision is used as standard and whilst patients can request that it is turned off this involves waiting days for an MDT meeting and having to fight and beg staff to turn it off. Since our campaign began, Rotherham Doncaster and South Humber NHS trust have implemented a consent form but the language of this is biased, coercive and passive aggressive and makes patients tick a box saying they don’t want their physical and mental wellbeing supported. It’s very easy to see how this could be used coercively and make patients feel afraid of opting out.

It’s all very well to say people will provide informed consent but that misses the realities of what it’s like being in hospital where you’re so often coerced and threatened to comply and punished if you don’t. 

[Redacted personal experience section]

The hospital stripped me of any shreds of autonomy I had left and through the coercion, threats, control and punishments inflicted on me by staff I was forced to comply. But on top of that I didn’t know that I had any rights to object to the parts of my supposed care that I didn’t want to do.

[Redacted personal experience section: arguing that true, ongoing, informed consent is not possible in a coercive system especially in context of patients’ previous trauma and abuse and not feeling safe to object to things those with power demand of you]

Do I need to make it any more clear that exerting power to remove the privacy, dignity and autonomy of patients replicates abuse?!

Whilst preparing this presentation, we couldn’t help but get stuck on how utterly absurd it is that we even have to have this conversation to begin with when putting cameras in the bedrooms and bathrooms of unwell and traumatised people is a horrific thing to do. 

And it’s so exhausting to constantly have to fight for our basic human rights. Whilst we’re challenging Oxevision but our work builds on the activism of StopSIM which challenged another horrendous, harmful and unlawful innovations which was rolled out without evidence or consideration of the risks and legality of the model with support of the academic health science network who notably declined to attend today.

It’s been a decade since Oxevision was first trialled on a mental health ward. It’s won many awards and had research papers published about it. Although CQC eventually started to point out to trusts that Oxevision needed to be used with patient consent, there were at least 9 trust inspections where they didn’t seem to question this or was even celebrated. Yet it’s only now that we’re having this discussion to highlight that after all this time, the way Oxevision has been used isn’t legal.

Southern Health are currently trialling the use of Oxevision on their CAMHS wards and despite discussing the concerns that have been raised about Oxevision, the prevention of future deaths report and the letter from NHS England in a recent board meeting, they are proceeding with the trial anyway, appearing to be reassured by waiting for further guidance from NHS England. 

It’s a circle of everyone evading accountability and responsibility. NHS England say it is trusts responsibility but trusts are waiting for information from NHS England all meanwhile patients are left suffering. 

It is completely unsustainable and unacceptable for local Trusts and NHS England to be operating in this way where we’re only discussing this technology 10 years after it was first implemented due to patients raising concerns. It’s absolutely shameful.

Usually at the end of a presentation, we would open to the floor for questions. However, today we’re going to use this time to ask our own question. We direct this towards NHS England, CQC, the academic health science networks and each individual mental health trust to ask when you are going to offer an apology to each and every patient who has been subjected to the harms of Oxevision?

[There was a very long pause and I needed to stop the audience applauding, emphasising that we are demanding an apology and will not sit down until this has been offered. After a very long pause and some prompting, apologies (of sorts – with caveats-) were eventually offered from members of the CQC, an NHS Trust and finally from a couple of members of NHS England. A number of other individuals working in lived experience roles within NHS Trusts or NHS England also stood to offer apologies on behalf of the institutions they are associated with]. 

Final note: We look forward to receiving formal apologies from the CQC, NHS England and individual NHS Trusts, as well as commitments to removing surveillance technologies from bedrooms. During this conference, our presentation showed our survivor research and lived experience perspectives – months of exhausting work – without which the use of these technologies would have gone unchecked.  The unacceptable, unlawful and unevidenced nature of surveillance was also confirmed by presentations from the British Institute of Human Rights, Alexis Quinn and the Mental Health Policy Research Unit. Formal apologies and commitments to change would demonstrate a recognition of this evidence. Failure to do so would leave open the door to even more inhumane ‘innovations’ entering our lives unchecked. 

View our slides from the presentation here: