Health and social care providers are finally obliged to provide information in accessible formats for blind and partially sighted people. But how ready are they to make this happen? Radhika Holmstrom investigates.
By the end of July, all organisations providing NHS or adult social care will be required by law (under the Health and Social Care Act) to adhere to the new Accessible Information Standard. This requires them to provide people with a disability or a sensory loss with information in a format they can understand. The standard applies to England only.
It’s a hugely welcome development, for people with a huge range of impairments. “The ethos of our society is that if you can’t read ordinary print you need to get someone else to do it for you. That goes against patient confidentiality and it also means that everything has to rely on patient memory,” says RNIB’s Hugh Huddy. “It’s not just the forms. The verbal communication can be very unhelpful for people with a learning disability,” adds Mencap parliamentary assistant Ismail Kaji. “I can’t think of an experience I’ve had from the NHS where the information has been excellent.”
RNIB is running Need it to Read it, a major campaign to get blind and partially sighted service users telling their GPs what they need. “Most people will at some point go into their GP, so that’s where your journey starts,” Huddy explains. “For people who are already using other services, it’s also important to notify them of your information needs. However, in future this information should cascade off your central record.”
Primed for action?
Unsurprisingly, people working in the field of sight loss are already familiar with the issue – and have often gone a long way to tackle it already. “In the council where I work, we’re now asking people for their requirements. As I work in a sensory team, we’re being encouraged to lead the way,” says rehabilitation worker Simon Labbett. “A lot could be learned from what a lot of ophthalmic units are doing as best practice,” says Mary Shaw, who chairs the RCN Ophthalmic Nursing Forum.
NHS England has made some guidance available, and has funded ‘outputs and products that can be shared to support others’, with the intention of making these available from April 2016. “We’ve had briefing sessions for our member organisations with NHS England, and we have been publicising the new standard through our member networks,” says Pete Fahy of Association of Directors of Adult Social Services (ADASS), pointing out that some of the requirements are also very similar to the existing ones in the Care Act 2014.
However, the timetable’s very tight and less specialised providers are faced with a steep learning curve; and there is considerable concern that many are neither equipped nor motivated to get to the top in time. “We’ve waited so long for this, and it’s hugely welcome but I do feel a bit deflated,” says Sharon Schaffer, vision strategy manager for Thomas Pocklington Trust and East London Vision.
“I’m concerned that it’s not being monitored, and that there is no real incentive for organisations to have this done, other than the threat of legal action – and who is going to bring that? A lot of providers are also agreeing that this is an issue. When I first asked Clinical Commissioning Groups (CCGs) and social care organisations who was leading on this, a lot of them came back and said ‘this isn’t anything to do with us: it’s down to the providers, as we just commission’. Now, I think it is changing – but the deadline’s coming very close. People need guidelines on what is reasonable, and standards to which to adhere.” “Commissioners should be doing things like helping GPs by pointing them toward transcribing agencies that meet the requirements for security,” Huddy suggests.
Awareness around the field
NB Online asked 33 CCGs what they were doing to prepare for new requirement. The ones that did respond varied quite widely. One is working with the local Healthwatch, organising a training day for organisations, and has briefed staff on how to use an existing translation provider to source information in alternative formats. Several are working with local organisations of and for disabled people and a couple are using, or exploring the use of, specialised software on their websites.
Others, however, direct member practices to NHS England for ‘specific requirements and direction’ or explain that ‘community relations managers’ are tasked with ‘[responding] to requests for our documents to be provided in accessible formats’; and one simply responded that ‘the CCG continues to liaise with its providers to seek assurance around implication of the Accessible Information Standard. All providers will be required to give progress updates through our regular assurance of their contracts.’
Beyond the letter
If providers do eventually all adhere to the Accessible Information Standard, it will be a huge step forward. Even so, there will be more to do. Shaw concludes by pointing out that ‘information’ is not just the individual information that a patient receives. “There’s the information about how to book appointments or the other services on offer; or the things that patients should or should not do. If you’re confronted with a noticeboard that’s all shiny laminated A4 sheets, each of them with messages in underlined capitals, that’s nightmarish for someone with vision problems. A lot of people will look at things like appointment cards, and letters, in terms of accessibility but won’t necessarily think about the other information they’re giving out.”