Steps are finally being taken to bring down barriers to understanding what accessible information is and how it can transform lives, as Dr Clare Mander explains

Effective communication and comprehension of information is at the core of all healthcare delivery, yet for many living with communication and/or information needs their healthcare is often compromised. The successful delivery of personalised accessible information is the solution.

The prevalence of accessible information needs in the UK remains unknown. The implementation of the Accessible Information Standard (NHS England, 2015) will hopefully lead to improved data collection and a better understanding of the scale of need.

Often, it is the quality of the communicative exchange during the delivery phase that ultimately leads to improved accessibility

Within Solent Trust, accessible information has been on the agenda for the past decade. This has in part been driven by a programme of PhD research that investigated the accessible information process within learning disability services.

Through this research, local knowledge and understanding of accessible information shifted from a resource-focused approach to a process-driven approach ie what happens during the delivery of accessible resources in clinical practice.

We know that many people with communication and/or information needs require one-to-one support during the delivery of accessible resources. Often, it is the quality of the communicative exchange during the delivery phase that ultimately leads to improved accessibility.

So how will the Accessible Information Standard change practice? Many staff within the NHS remain unfamiliar with the term “accessible information”, yet many will be able to recall situations when communication with patients has been problematic.

Powerful message

Beyond a basic awareness of accessible information, there is a great deal more NHS staff need to know and understand to significantly improve practice. To overcome this challenge, Solent Trust is developing and piloting a tiered model of accessible information training which has been funded by Health Education England – Wessex locality. The proposed tiers of training are:

  • Tier 1 – an accessible information awareness DVD to be rolled out across the trust
  • Tier 2 – Self-directed learning and resources to be used by teams who have a high proportion of patients with communication and/or information needs.
  • Tier 3 – A programme of specialist workshops for those members of staff who can champion accessible information within their team or service.

On 18 December 2015, Solent Trust hosted Hampshire’s first accessible information support event. Key representatives from health and social care organisations across Hampshire were invited to attend. The aim was to explore how the new national requirements could be met at a county-wide level using creative, person-centred, effective approaches.

The new accessible information awareness DVD (Tier 1 training) was also launched at the event. The DVD was co-created with local patients living with accessible information needs.

Keith (an interviewee) was willing to share his story on camera and he had a powerful message. He highlighted the differences between those who have lived with their communication and/or information needs all of their lives versus those who have acquired their needs through their lifetime.

Effective communication is at the heart of everything we do

For Keith, there was a long period of adjustment after his stroke, which meant he was reluctant to admit he needed information in a more accessible format – a crucial consideration for the implementation of the national standards.

The DVD was well received and has been endorsed by NHS England as best practice. This can be accessed at www.solent.nhs.uk/AI

Organisational barriers faded and the focus was on what we could achieve together. It was clear from the introductory messages that the room was filled with accessible information ambassadors who recognised that effective communication is at the heart of everything we do.

An interesting point emerged from discussion – when accessible information is everyone’s business, is there a danger no one will take the lead? This in turn led to debate about whose role it should be.

Early support

For accessible information to be a success, a dual approach is needed. Leadership is essential to influence the wider health and social system, in parallel with the empowerment of patients to make them masters of their own accessible information needs.

At the event, attendees were presented with a case scenario. In this scenario “Jack”, a patient who had suffered a traumatic brain injury, was faced with a series of difficult events that were compounded by his newly acquired accessible information needs.

These events included his discharge plan from hospital, his community rehabilitation programme and an accident when shopping. The attendees were tasked with considering the impact of communication and/or information breakdown at various stages of his journey.

Ninety-six per cent of participants rated the event “exceptional” or “very good”

The attendees recognised that Jack’s unmet accessible information needs put him at risk of devastating consequences. Furthermore, they highlighted the wider economic impact of his communication breakdown.

Designing and delivering personalised accessible resources at the beginning of an episode of care will take more skill, time and preparation; however getting the support right in the early stages could lead to time, and therefore money, being saved.

Overall, feedback from those attending the event was extremely positive. Ninety-six per cent of participants rated the event “exceptional” or “very good”.

There is clearly an ongoing need for events of this nature as 100 per cent stated they would be keen to attend another event.

Themes for future events included more opportunities to share information tools and resources, joint working in particular on producing information, more case studies and examples of how accessible information has been used with individuals, improved understanding about how we can assess individual needs, and learning about the impact of using accessible information. 

Together we have the opportunity to make a real difference. 

Dr Clare Mander is clinical lead in accessible information, Solent Trust.