‘It just wasn’t viable’: the safety crisis facing patients with sensory impairments

When Henrietta Hughes, the first patient safety commissioner for England, set out to investigate issues faced by those with sensory impairment, there was no shortage of examples. She had received several letters from patients about the harm caused by being unable to tell drugs apart or read medicines information leaflets, nor could some patients use medical devices safely.

Published in March 2025, ‘The Safety Gap’ report — commissioned by Hughes and researched by Margaret Watson, a health services researcher and pharmacist at the University of Strathclyde — warned that failure to provide medicines in an accessible way could put at serious risk the 2 million people in the UK living with sight loss and more than 18 million adults who are deaf or with a hearing impairment^​1​.

One case highlighted in the report involved a male patient with severe sight loss and type 2 diabetes mellitus (T2DM) who was prescribed an injectable medicine. The medicine required self-assembly using a device he was unable to operate independently owing to his visual impairment.

“It just wasn’t viable to give them to somebody who can’t see what they’re doing, really,” he said.

Without any discussion, he was told there was no alternative and had to rely on his wife to administer the injection. On occasions when she was not at home, he was forced to ask a neighbour — which he found degrading. “You shouldn’t have to go asking a neighbour to come and inject your stomach because you can’t see what you’re doing yourself.”

Another case illustrated the difficulties experienced by people with sight impairment when changes are made to their prescribed medicines, with one patient explaining: “My first indication is something as simple as you know that doesn’t … feel like the last boxes I had or, you know, the packaging feels particularly different or the shape of this pen has … changed.

“You then have to find a way to verify … that something hasn’t been done in error before you take the medication,” they added.

In general, there is an assumption that patients will have somebody there to help, which is not the case for everyone, but also impacts people’s independence, says Watson. It places a large burden on the patient to “check and recheck” their medicines, she adds.

Charities have been campaigning on this issue for years, but it has not got the traction it should have because it has not been viewed as a patient safety issue. This must change, Hughes says.

“I see this very much as a safety issue, and that’s been really confirmed by the feedback we’ve had from patients.”

She says these issues do not get picked up by the Medicines and Healthcare products Regulatory Agency (MHRA) Yellow Card reporting scheme because patients either do not know they can report it, have no accessible way to report it, or they have no idea that this type of medicines error is eligible.

Focus on diabetes

Hughes particularly interrogated the problems faced by people with diabetes who have sensory impairment. Sight loss is part of the disease process for this group of patients, who are having to carefully manage their condition with potentially dangerous medicines.

New technologies allowing continuous glucose monitoring (CGM) and closed-loop ‘artificial pancreas’ systems have the potential to be a game-changer, notes Hughes. But even this modern technology has not been designed with sight loss in mind. Refilling insulin pods can be fiddly and require the user to visualise tiny numbers and scales. One patient in a focus group for the report showed researchers the device she had been given: it was black, with all-black parts, stored in a black case.

For those with T2DM who rely on blood glucose test strips, sight loss can be a barrier to managing their condition if they do not have sufficient visual function to use the lancet, manipulate the test strips or read the results. CGM technology is a potential answer to this, but Watson heard from patients who had been told they were not eligible.

Addressing these issues will require a “shift in mindset” across the whole system from the design, manufacture, packaging, prescription and dispensing of medicines and devices, says Hughes.

“We need to bring patients into those conversations to ask, have we gone as far as we possibly can? Is it sufficient to have the name of the medicine in Braille on the box, but not to have the dose? Is it sufficient to have the name of the medicine in Braille and then the pharmacist puts the label on top of that?” she says.

Fit for purpose

Watson agrees these are system-wide problems. “The packaging of medicines is not fit for purpose. We don’t train healthcare professionals sufficiently well about the additional needs of people with visual and hearing impairment. There’s a huge amount more that we can do.”

Packaging was a concern raised by patients in the focus groups, who highlighted that some boxes are almost impossible to open without damaging them, meaning they cannot be resealed, leaving the contents at risk of falling out and getting lost or mixing with other medicines. “The number of resealable …cardboard boxes has gone down in the last few years, and that means that [blind people’s ability] to drop, lose, kick medication around the bedroom has gone up,” said one patient.

“That would be a very simple innovation that could come back into medication design,” they added.

But Watson does not get the sense that the pharmaceutical industry is all that interested. She has presented her research to industry representatives, highlighting the challenges, only to be told it is up to community pharmacists to ensure medicines are suitably supplied. This leaves patients relying heavily on pharmacists or carers, often compromising their independence and privacy.

‘The Safety Gap’ report called on the MHRA to review whether its current guidance and regulations on licensing and packaging goes far enough.

Julian Beach, interim executive director of healthcare quality and access at the MHRA, says manufacturers already have to provide further accessible formats of product information for patients where required but recognises there are “opportunities to improve medicines information”. 

“We acknowledge and welcome ongoing work across the medicines and medical devices landscape, including by patient groups, to identify and address issues that may be affecting those with sensory impairment,” he says. 

Work by the UK electronic patient information (ePIL) taskforce — a collective of medicines manufacturers and trade associations looking into digital-first patient information — has stalled. Hughes recommends restarting it with input from patients with sensory impairment.

Amit Aggarwal, medical director at the ABPI, tells The Pharmaceutical Journal: “We and other industry associations are currently working with both the medicines regulator and the Department of Health on this and will continue the drive towards piloting, and then hopefully implementing, electronic patient information leaflets in the UK.”

“If the patient safety commissioner says there is a challenge here, and we need to start addressing it, I’m slightly more optimistic that that will elicit a good response,” says Watson.

Ultimately, for medicines packaging, medical devices and apps — including the NHS App, which has been heavily criticised by blind and partially-sighted people — to be “fit for purpose,” the end-users must be involved in their design, she adds.

Pharmacists’ role

People with sensory impairment often hesitate to disclose it when they visit a pharmacy, fearing embarrassment or having to repeatedly explain their situation.

Many patients just want five or ten minutes to sit down with their pharmacist, “to talk through exactly what’s what, what feels like what, and to help make adaptations that are necessary for safety,” explains Lisa Riste, a research fellow affiliated to the NIHR Greater Manchester Patient Safety Centre at the University of Manchester.

‘The Safety Gap’ report observes that patients’ medical records should include clear flags for accessibility needs — information that should be visible and accessible for all healthcare professionals, including community pharmacists, so they can make any reasonable adjustments. However, the report also stresses that those supplying medicines and devices must “have sufficient funding to support the additional time and resources required” to assess patient needs and implement those reasonable adjustments.

One potential solution is FLAG-Me software — about to be trialled in ten pharmacies across Greater Manchester — developed by the NIHR Greater Manchester Patient Safety Centre in collaboration with people with sight and hearing impairments and community pharmacists, explains Riste. The software (FLAG-Me Vision and FLAG-ME Sound) integrates with patient records to display visual ‘prompts’ for pharmacists, helping them identify and support patients with sensory needs.

One patient involved in development of the software said in a statement on the FLAG-Me website that it would help to improve their relationship with the pharmacist. “Being able to discuss my personal information in a private setting and explore methods to help me take my medication safely and in the full knowledge of what I am taking, gives me the confidence to be able to forge a loyal bond with the pharmacist, safe in the knowledge that my health and safety is paramount.” 

Solutions might include tactile markers on medicine boxes that feel similar, so patients are able to tell them apart or simply having large font labels. Patients also want clear advice on what to do if they make an error when taking a medicine.

“Pharmacists do really see the value, the benefit in preventing safety errors, but they didn’t really feel that they’ve got the necessary technical know-how, which is why we have also created a set of resources to support them,” says Riste.

The implementation pilot in partnership with Community Pharmacy Greater Manchester will carefully assess how many flags are raised, consultations held, time taken and changes made as a result.

“We’ve tested it on the Greater Manchester care record and found 35,000 cases of sight loss, which is about 50 people per pharmacy. If people only came in for one consult, it equates to around one a week.”

Training

Watson has created a four-week online course on supporting medicine use by older people with visual or hearing impairment, which is open access. In summer 2025, her team will be launching a searchable website with advice for different situations. For example, how to help someone who is visually impaired differentiate between their inhalers.

“I am looking at undertaking research exploring what a medication review [around sensory impairment] delivered in a community pharmacy could comprise, to make sure that the supply of medicines is fit for purpose, and what additional assistive technologies could be used for these individuals,” Watson says.

Gordon Hockey, director of legal at Community Pharmacy England, says a small fee for reasonable adjustments to meet the Equality Act is included in the dispensing fee but that community pharmacies are underfunded for the services they provide.

“Funding for training on patient needs is currently part of remuneration for community pharmacy services, but we are looking at whether pharmacies could close, within their normal opening hours, to enable training for the pharmacy team or in collaboration with other healthcare professionals, to improve primary care services.”

A spokesperson for Community Pharmacy Scotland says there is no direct funding in Scotland to support community pharmacy teams in meeting the needs of patients with sensory impairments. They also noted that NHS Education for Scotland provides educational resources online on sensory impairment, which are accessible for pharmacy teams, and any learning opportunities are highlighted through CPS’s weekly newsletter.

“CPS would welcome any additional funding for the community pharmacy network on this type of training and flexibility to make reasonable adjustments,” the spokesperson added.

While teaching on sensory impairment in pharmacy remains limited — only 7 out of 34 pharmacy schools responded to a recent survey by one of Riste’s PhD students — some institutions are taking steps to close the gap.

For example, at Kingston University, Dipa Kamdar, its inclusivity lead for pharmacy, says they are working to make training truly patient focused. Alongside meeting regulatory requirements for inclusive communication set out by the General Pharmaceutical Council, Kingston runs immersive workshops, health literacy sessions, and simulation exercises involving patients with sensory impairments. “We are keen to put patients at the heart of our care,” she says.

Information standard

The NHS Accessible Information Standard, which has been in place since 2016, is meant to ensure a consistent approach to identifying, recording, flagging, sharing and meeting patient’s information communication needs — including those with sensory loss^​2​.

However, Hughes acknowledges challenges around its implementation: “The accessible information standard, I think, is going to be a tougher nut to crack,” she admits, noting that the Royal National Institute of Blind People (RNIB) is one of the organisations unhappy with the standard’s level of robustness.

“The risk is that we create so much flexibility that people can put it low down on their priority list. But I do think that when it comes to all the teams that we’ve engaged with, whether it is NHS England, MHRA or as part of the ePIL Task Force, everyone has been really keen to do better,” she adds.

Khadija Raza, a policy officer at the RNIB who is severely sight impaired, says near-misses with medicines and problems using medical devices are frequently reported to the charity. She even experienced a near miss with her own medicines and only avoided an error because the packaging felt different.

“It’s been really difficult to feel that we’re making any traction. [However], since this [The Safety Gap] report has launched, we have had pharmaceutical companies proactively approach us. The more difficult part is getting the national [accessible information] standard in place, or accessibility to be considered within all procurement processes.”

Raza says improving accessibility of the NHS App for people with visual impairment would be an important step forward. She also highlights the importance of flags on all healthcare systems — if they come with appropriate awareness, training and support.

But the most impactful advance, she says, would be finally getting electronic patient information leaflets.

“I have never read a patient information leaflet because I’ve never been able to my whole life, so I think that would be a very empowering experience for a lot of blind and partially-sighted people.

“If this project goes through and the digital becomes the default leaflet, it would be a big win and I think it would be an amazing opportunity to start looking at all the alternative formats of patient information leaflets, like Braille, large print and easy read.”