The Accessible Information Standard Thank you for listening tome today – I'm here to introduce the standard and explain its implications and potential benefits Lucy Rogers Project Manager Implementation of the Accessible Information Standard

Background and Scope With partners, NHS England has developed a new ‘Accessible Information Standard’ (SCCI1605 Accessible Information). The Standard provides direction to the health and care system around accessible information and communication support for patients, service users, carers and parents with a disability, impairment or sensory loss. Partners are RNIB, SENSE, CHANGE Read between the lines - about equality in access to health information – enabling and facilitating an equal platform for everyone to make decisions and be informed on their own health, be empowered and in control There are an estimated 10 million people with hearing loss across the UK, 14% of them have missed an appointment due to not hearing their name being called   There are estimated to be nearly 1 million people in England with a learning disability,. a prevalence rate of 2% of the general population.   There are esti around 360,000 people registered as either severely vision impaired or vision impaired in the UK (i.e. 1 in 180 adults) There are esti approximately 259,000 deafblind people in the UK.

Why do we need a new Standard? The Equality Act 2010 places a legal duty on all service providers to make “reasonable adjustments” to support disabled people, including providing information in “an accessible format”. Service users with communication needs often receive inaccessible information and are not provided with the communication support they need. This has implications for patient choice, safety, and experience. RE INFORCES OUR LEGAL DUITES Accessible format – what does that mean - ranges from font size on letters to formatting to include pictorial support ( easy read) to emailing and texting patients to BSL Interpreting and text relay. Implications- dna’s, by not understanding or being able to interpret the communication to attend appointments, to discuss healthcare – invited to routine screening -, if an iduviudaul is mssing out on this what is the knock on effect on their health treatment outcome????

Implementing the standard The Standard applies to service providers across the NHS and adult social care system, and effective implementation will require such organisations to make changes to: Policy Procedure Human behaviour Electronic systems

Expected benefits resulting from implementation Make decisions about their health and wellbeing, and about their care and treatment. Self-manage conditions. Access services appropriately and independently. Make choices about treatments and procedures including the provision or withholding of consent.

The Standard sets out a consistent approach to: Identify Record Flag The Process The Standard sets out a consistent approach to: Identify Record Flag Share Meet communication needs of users. A process underpins the standard to enable the require support once identified to be in place for all future interactions. Why- firstly patients shouldn’t have to re explain their needs every time and the provider has chance, ‘a heads up’ to meet the needs to avoid putting the patient in an unacceptable situation which is when they can not communicate or be communicated with. Also improves the efficiency of the appointment – could reduce the amount of dna’s or repeat appointments due to failure to meet communication needs. Even though it is underpinned by a process it also is layered with the requirement of skills in identifying needs and a change in culture to acknowledge communications and support needs and the impact this can have on the patients experience and in turn outcome.

4 subsections Requires specific contact method – telephone, email, text, text-relay. Requires specific information format - braille, large font, easy-read- audio, communication chart. Requires communication professional – BSL interpreter, note taker, STTR. Requires communication support – advocate.

Case Study Gladys is 87 years old and lives in a nursing home. She has some hearing loss and has dementia. Recognising that both conditions are likely to increasingly impact upon Gladys ability to communicate in the future, staff at the nursing home design a communication chart to support Gladys in understanding important parts of her routine, eg daily activities and meal times. Members of staff at the nursing home have received training in developing and using communication charts

Case Study When the GP visits the care home to give Gladys a check up, one of the care home staff support Gladys to understand what is being said, using the chart. Gladys records indicate that’s she uses a communication device.

Impact of the standard As a result of the Standard, patients, service users, carers and parents should: Be able to make contact with, and be contacted by, services in accessible ways. Receive correspondence and information in accessible formats, including alternatives to ‘standard’ printed English. Correspondence- letters emails, text- can the user interpret them and understand what you want them to do. An therefore be empowered and have an equal opportunity and chance to live a healthy life.

Impact of the standard As a result of the Standard, patients, service users, carers and parents should: Be supported by a communication professional at their appointments if this is needed to enable effective, accurate two-way discussion. Receive support from health and care staff and organisations to support effective communication. BSL interpreter for example- pre booking for coordinated attendance at appointment etc

The Accessible Information Standard quick overview. There are five basic steps which make up the Accessible Information Standard: Ask: identify / find out if an individual has any communication / information needs relating to a disability or sensory loss and if so what they are. Record: record those needs in a clear, unambiguous and standardised way in electronic and / or paper based record / administrative systems / documents. Alert / flag / highlight: ensure that recorded needs are ‘highly visible’ whenever the individuals’ record is accessed, and prompt for action. Share: include information about individuals’ information / communication needs as part of existing data sharing processes (and following existing information governance frameworks). Act: take steps to ensure that individuals receive information which they can access and understand, and receive communication support if they need it. These steps mirror the process. Ask- seems simple really but for these groups of people it can be difficult to identify need- pilot site used communication cards and also tarined frontline staff to look for cues of a communication or information support need. Posters were used to inform users they could express a need and it would be met. Record- ‘SCR’- code used to record need not disability- Alert- should be highly visable so when data is pinged around people can easily see it and act upon it. Share- needs to pass on existing data sharing processes and allow that need to be pre emtively met at the next point of contact act- again needs skill understanding and awareness- feeds back into the cultural change required. Awareness of needs and that if we meet them the patient will have a much better experience and outcome

Aim of the Standard The aim of the Standard is to establish a framework and set a clear direction such that patients and service users who have information or communication needs relating to a disability, impairment or sensory loss receive: ‘Accessible information’ (‘information which is able to be read or received and understood by the individual or group for which it is intended’); and ‘Communication support’ (‘support which is needed to enable effective, accurate dialogue between a professional and a service user to take place’); So that they can access services appropriately and independently, and make decisions about their health, wellbeing, care and treatment. Pilot sites – found if was a very patient needs focused process to embed. They found that they did have to require intial time to clarify there local implmentaion plan and process and they had to clearly identify there approach- they identified simple effective changes like reviewing the accessibility of standard documents and adding communication needs questions to new patient registration- challenges were identified as time to train staff, cost to produce in alternative formats.

Timescales and requirements The Standard was approved in June 2015 and published on 3 July 2015. Compliance with the Standard is mandatory for all organisations that provide NHS or adult social care. There is a 12 month implementation period –full compliance is required by 31 July 2016. There are three other milestones in advance of 31 July 2016, including that organisations must have developed a plan for implementation by 1 September 2015. Also just a point- accessible formats of service user feedback would support identifying whether the standard has been implemented as desired. As the users what they want and if we are getting it right Benefits resulting from implementation: Improved health and wellbeing amongst patients Improved patient safety More appropriate use of services Improvement in the effectiveness of clinical care Improvement in patient experience. Total and full inclusion and equality in access to health information is the key message underpinning this standard. It will require some work but the benefits realised from its implementation are that we can influence the experience and outcome of health decisions if not for thousands then for millions.

How can I find out more and further help? Sign-up to receive updates about this work and / or find out more at www.england.nhs.uk/accessibleinfo Please email england.nhs.participation@nhs.net with queries or to request documents in alternative formats. Take the first step, visit our webpage and start your local campaign to become totally accessible to all.