NHS takes stock of campaign to give disabled patients greater access

10 May 2017

Adoption is the priority for NHS' Accessible Information Standard: delegates look for more stick and carrot at AbilityNet conference

Sign language users visiting Noble’s hospital on the Isle of Man are handed an iPad connected to a video signing service when they arrive, to enable them to communicate with hospital staff.

This striking example of how technology can overcome the barriers to communication encountered by disabled people using health and social services has up until now been a rare one.

A 2009 report by RNIB found that then the majority of blind and partially sighted people were not consulted about their information needs,. The study claimed that 95% of those given personal health information by their GPs were not asked which reading format they required it in.

It is a problem NHS England is now taking seriously. For the past six years it has been working on how to remove the blocks that make it difficult for disabled people to access care.

Some patients struggle to read or understand vital information relating to their treatment. Others have difficulty using the online and telephone services the NHS increasingly relies on to book appointments, carry out consultations, deliver prescriptions and communicate the results of tests.

In future the health service will depend much more on digital communications as patients' vital signs are monitored remotely and their care is managed electronically.

In a bid to make these channels inclusive, the NHS introduced a legally binding standard in August last year to push GPs and hospitals into making their services more accessible.

The Accessible Information Standard (AIS) is intended to ensure patients can communicate effectively with both health and social services.

As a result large print letters, audio recordings, Braille print and sign language interpreters are now much more likely to be in use in surgeries, clinics and hospitals in England.

Care providers are required to follow a five step plan that involves identifying the communication needs of a patient, recording them, flagging up what is needed to staff, sharing that information and finally ensuring a patient’s needs are met.

"We understand that we need to work with people who need information in different formats, people who use BSL or read Braille for example, and groups and organisations with expertise in producing or promoting accessible information and communication" said Sarah Marsay, Public Engagement Account Manager at NHS England (pictured above), who runs the AIS project.

Recently Marsay commissioned a review to find out how well the standard is working. Professionals, patients and suppliers were polled on their views, with the intention of revising the standard in the light of their feedback by July.

'Adoption has not been universal it would be naive to say anything different," she told a recent conference organised by IT charity AbilityNet to debate the standard.

"Our review is looking at the impact (of the standard) and any adjustments that are needed. Then we will reissue the specification and implementation guidelines"

While delegates were generally agreed AIS was a robust standard, many were concerned that it was not being adopted widely enough. There were calls for greater efforts at enforcing the law, despite the fact that AIS is included in all NHS contracts.

"Can the standard be delivered?" asked British Assistive Technology Chair Antony Ruck, who led a session on how AIS should reflect the role of digital technology in enabling patient communications. "It is a matter of will and capability."

Others felt more could be done to emphasise the economic benefits to health organisations.

A decision to exclude websites from the standard drew fire from some of the 60 people who attended the event at the headquarters of the British Computer Society. Although patients may be directed to a website as a way of making information more accessible, sites themselves are not covered.

"That is another piece of work," explained Marsay. "AIS does not set out accessibility standards for an NHS site but of course they are not unrelated. A website can be an opportunity to provide accessibility: it can be an alternative to the phone and certainly be more accessible to people using screen readers."

Accessibility is a complex business. One delegate from the London Borough of Camden, which runs a call centre fielding enquiries from people using a whole range of services, was concerned to know how to flag up disabled people when they called in.

Dr Howard Leicester MBE, a long-time campaigner for better patient services, underlined how important the standard was to specific groups of disabled people.

"The life expectancy of those with learning difficulties is lower than the rest of the population because of their communication problems, while sight impaired people often miss appointments because they cannot read the letters they are sent."

However, technology was itself a barrier to implementing the standard. GP systems, for example, need to be upgraded to include routines for recording and flagging up patients’ communication needs. Not all suppliers had done that.

Others saw non-technical barriers to adoption of the standard. Andrew McCracken of charity National Voices said there were "great pockets of good things going on. But it is not just a question of technology there are bigger barriers: cultural and political barriers."

Jean Irvine OBE, IT Accessibility Champion, was convinced the standard was fine. "It is all about implementation and that requires that all of the bodies come together and put the patient first."

William Danckwerts, of Panlogic, a company that builds government solutions, also said the standard looked to be a robust model. The question was how to drive adoption; perhaps through a kite mark system.

He pointed out that some services were not accessible at the moment because of new devices and services. "If we are not careful we will become less rather than more accessible," he warned.

"Before the introduction of the standard there were lots of road shows and good literature," said Mike Page of RNIB Business. "We were expecting (GP) surgeries to get in touch but we have only had 20-25 enquiries."

"People have adopted their own best practice. We need to measure where we are today and how we can progress."

Although there is clearly some way to go before the Isle of Man experience is the norm for disabled patients in England, there is no lack of determination to get there and in as short a time as possible.

Both BATA and AbilityNet will be lending their weight to this all-important project.